I have had a series of okay days wherein I feel like I’m moving forward, but today was quite a little different… sigh…
Perhaps it’s the finding myself moving forward and realizing that these emotions I’m feeling right now is making me make backward steps… will I find myself making backward steps every now and then… sigh…
Perhaps it was because of the girl who is a 5th grader who helped me open my classroom door. When we smiled at each other and made eye contact, all I could think about was the daughter that will never grow up to be like her… sigh…
Perhaps because I overheard a co-worker talk about how she is having a hard time with her teenage daughter and all I could think about was wanting to trade places with her and be able to fight with my daughter too when she becomes this difficult and egocentric teenager…sigh…
Perhaps it was when I was opening the mail about my son’s college fund and realized that I do not need to get one for my daughter because, realistically, she’s not going to college… sigh…
Perhaps it was because instead of getting my daughter Isabella a college fund, I thought of getting her a child life insurance that she can cash out (all contributions only) if she does not die when she reaches 18… but if she dies we get some money, but that would almost seem like I was wishing/thinking she’d be dead before she reaches 18… sigh…
Perhaps its because I saw her christening gown hanging in the closet… the 4month sized christening gown that will still be too big for her even when she becomes a half a year old… sigh…
Perhaps its because a dark thought crossed my mind that she might get to wear this christening gown on her funeral… sigh…
Perhaps because I’m constantly scared that God will take her away from me anytime and that I find myself paranoid, or just waiting, or constantly being on the look out for the day that it will happen…. sigh…
Perhaps its because I feel restless thinking that more bad news about her condition will be coming our way… sigh…
Perhaps its because I constantly need to dodge queries about how the baby is doing or how I’m doing because avoiding this discussion seems to be the more emotionally healthier option for me… sigh…
Perhaps because I caught myself thinking that she’s almost three months old now and although she is gaining some skills, I also know that she already is behind in her developmental milestones, and although the skill discrepancy is not yet that wide, I know for sure that it will get wider…sigh…
Perhaps its because I already know, and research literature supports it, that speech and language will be a challenge for WHS children, but with my daughter having hearing loss, all the more that this very important developmental area becomes compromised… sigh…
Perhaps its also because I already know, and research and literature supports it, that mental retardation is expected with 100% of the WHS cases, but with my daughter having partial agenesis of the corpus callosum, then her cognitive development is all the more significantly impaired… sigh…
Perhaps it’s the constant worry of what the big unknown future will be like for her, for our family… sigh…
Perhaps it’s my impatient anticipation to have my tears of grief and worry be replaced by tears of joy… sigh…
Perhaps it’s the constant reassuring of myself that things will be okay, that she will be whoever she is going to be and she’s going to be fine… sigh…
Perhaps it’s the constant letting go of things that are considered the “norm”…. this constant “letting go” can get tiring, because once I find myself in a state of rhythm, a new worry comes along… and yes I need to let go of that too… sigh…
Perhaps its because I’m just trying to get by day by day putting on a smile, faking the happiness, feigning strength… because maybe by faking it I can eventually make it… sigh…
Perhaps its because I love Isabella so much, but this love isn’t enough to make the syndrome, and all the complications that come with it, go away… sigh…
Thursday, February 25, 2010
Tuesday, February 23, 2010
The Story of the Pearl
(Story By Marilynn Lomangino)
Do you ever wonder about how a pearl develops?
Some time in the course of the oyster’s development, a foreign substance such as a grain of sand gets into the little muscle and irritates the oyster. In response, the oyster covers that irritant with a secretion. The longer the irritation is there, the more the oyster coats it. Pearl oysters vary in size and can be quite rough and ugly. Yet what is happening inside is a combination of rainbows, moonlight, and bits of flame.
Once the oyster accepts the irritation as part of itself, the pearl begins to develop. The worst storms, gales, even hurricanes will not dislodge it.
As time goes by and this oyster is finally pulled up from the bed where it has been for many years, it is opened only to reveal a beautiful pearl.
--------------------
Something comes into our spiritual life; it comes because we have been chosen to do something special. To face this task, we need a lot of prayer, sacrifice, and acts of love—things that are not always easy for our human nature to accomplish. The longer the substance is there, the more it can irritate, just like how sometimes we are asked to do things that we really don’t want to do. But we offer that sacrifice up so that finally, when we get to the end of our life, we will be able to open up our little spiritual oyster and reveal our special pearl. The longer we stay committed and the more we do, the more beautiful will be the pearl that we get to make.
There is a reason for everything…. We may not know it yet, but in due time, the gift/blessing will be ours to reap.
I salute you for being a committed and hardworking mommy of a child with special needs.
Do you ever wonder about how a pearl develops?
Some time in the course of the oyster’s development, a foreign substance such as a grain of sand gets into the little muscle and irritates the oyster. In response, the oyster covers that irritant with a secretion. The longer the irritation is there, the more the oyster coats it. Pearl oysters vary in size and can be quite rough and ugly. Yet what is happening inside is a combination of rainbows, moonlight, and bits of flame.
Once the oyster accepts the irritation as part of itself, the pearl begins to develop. The worst storms, gales, even hurricanes will not dislodge it.
As time goes by and this oyster is finally pulled up from the bed where it has been for many years, it is opened only to reveal a beautiful pearl.
--------------------
Something comes into our spiritual life; it comes because we have been chosen to do something special. To face this task, we need a lot of prayer, sacrifice, and acts of love—things that are not always easy for our human nature to accomplish. The longer the substance is there, the more it can irritate, just like how sometimes we are asked to do things that we really don’t want to do. But we offer that sacrifice up so that finally, when we get to the end of our life, we will be able to open up our little spiritual oyster and reveal our special pearl. The longer we stay committed and the more we do, the more beautiful will be the pearl that we get to make.
There is a reason for everything…. We may not know it yet, but in due time, the gift/blessing will be ours to reap.
I salute you for being a committed and hardworking mommy of a child with special needs.
Sunday, February 21, 2010
New Changes
The infant specialist and the OT came to see my Isabella during the first week of February. At that time they tried to asses her. They have this checklist that lists all the skills that infants are supposed to have at a certain age. I wasn’t aware that there is such a checklist that existed until then. When they were assessing her and asking us all these questions I did see the OT and infant specialist look at each other with that knowing look. I’ve seen that look before and I have probably given that same look too. They whispered to each other and marked something on the list. At that time, all I was thinking was, “What?” What did you guys not find that my daughter was supposed to have during this period?”. I mean, just tell me already, right?
The OT and infant specialist didn’t finish their assessments and so we scheduled a follow up 2 weeks after. I asked them what their impressions were, so far, right before they were about to leave and their reply was we will meet with you when we have completed our assessments and have completed our reports and we will discuss it at an IFSP meeting. So I guess we wait what the specialists think. Which is hard because I already have a lot of things that I was worrying about.
Some of the questions that they asked were…
Does your daughter have eye contact? Our reply was No.
Does your daughter visually track objects? Our reply was No.
Does your daughter grasp on objects? Our answer, again, was No.
So, reviewing these questions in my head worried me all the more. It gave me the impression that my daughter does not have skills. That she will grow up so severely delayed that she will just be there… not looking, no response…. nothing. And, of course, as a mother, this pains me.
In the two weeks that followed, my husband and I worked double time on checking if my daughter has eye contact, tracking, and gripping skills. We tried to build her up on those skills. We tried really really hard.
When they came back two weeks after, the infant specialist and OT noted skills that my daughter has gained. She was already able to make eye contact, track objects, roll from side to back, bring her hands together, grasp objects for a short period of time, have better head control, can move her head from side to side, tries briefly to pull herself up, and my husband and I already suspect that she is starting to demonstrate a social smile.
This is indeed progress!
With my son, I did download a copy of developmental milestones from the internet of what to expect for each period/month. I was not worried that he was going to attain them on time, nor did it cross my mind that I need to assist him to achieve them. After all, he was “normal”.
I asked the specialists if I can possibly have a copy of that checklist that they were using. They obliged. The difference between this checklist and the checklist that I downloaded from the internet for my son is that it contains the developmental milestones for each period/month, and it also has the tiny skills that lead to the major ones. So, lets say the skill is rolling, the tiny baby skills that lead to this big skill include rolling from side to back, rolling from back to side, lifting the feet to try and roll from side to back, etc. I never paid attention to these tiny steps before, I guess I didn’t really have to.
You see lately, I would catch myself forgetting that my daughter has special needs. And whenever I do, I would ask myself if that was me
being in denial, or if it is me seeing things beyond the syndrome. I’m not quite sure. All I know is that I am scared going back to the “denial” phase because I already feel that I am moving forward. And that of course I can’t really keep looking at Isabella and keep on thinking “syndrome”, and “special” all the time. She needs to be given at least some credit that the time will come that she will show me what she is made of. So if this is what denial is like, then I guess, it’s a better place. Is this denial? Being realistic? Being more focused? I really don’t know for sure.
So, what have I learned from the last two weeks? I learned, 2 new things…
1) That I know there will be delays in Isabella’s development, I am viewing this possibility realistically, but this does not stop me from helping her work towards the big skills through helping her with the tiny baby steps.
2) That I should not worry about what’s going to happen to Isabella in the next 5, 10 years when I can focus on the NOW and help her through to attain the little skills on her own time and pace.
I was so happy that Isabella showed off what she has.
I’m a proud mama.
The OT and infant specialist didn’t finish their assessments and so we scheduled a follow up 2 weeks after. I asked them what their impressions were, so far, right before they were about to leave and their reply was we will meet with you when we have completed our assessments and have completed our reports and we will discuss it at an IFSP meeting. So I guess we wait what the specialists think. Which is hard because I already have a lot of things that I was worrying about.
Some of the questions that they asked were…
Does your daughter have eye contact? Our reply was No.
Does your daughter visually track objects? Our reply was No.
Does your daughter grasp on objects? Our answer, again, was No.
So, reviewing these questions in my head worried me all the more. It gave me the impression that my daughter does not have skills. That she will grow up so severely delayed that she will just be there… not looking, no response…. nothing. And, of course, as a mother, this pains me.
In the two weeks that followed, my husband and I worked double time on checking if my daughter has eye contact, tracking, and gripping skills. We tried to build her up on those skills. We tried really really hard.
When they came back two weeks after, the infant specialist and OT noted skills that my daughter has gained. She was already able to make eye contact, track objects, roll from side to back, bring her hands together, grasp objects for a short period of time, have better head control, can move her head from side to side, tries briefly to pull herself up, and my husband and I already suspect that she is starting to demonstrate a social smile.
This is indeed progress!
With my son, I did download a copy of developmental milestones from the internet of what to expect for each period/month. I was not worried that he was going to attain them on time, nor did it cross my mind that I need to assist him to achieve them. After all, he was “normal”.
I asked the specialists if I can possibly have a copy of that checklist that they were using. They obliged. The difference between this checklist and the checklist that I downloaded from the internet for my son is that it contains the developmental milestones for each period/month, and it also has the tiny skills that lead to the major ones. So, lets say the skill is rolling, the tiny baby skills that lead to this big skill include rolling from side to back, rolling from back to side, lifting the feet to try and roll from side to back, etc. I never paid attention to these tiny steps before, I guess I didn’t really have to.
You see lately, I would catch myself forgetting that my daughter has special needs. And whenever I do, I would ask myself if that was me
being in denial, or if it is me seeing things beyond the syndrome. I’m not quite sure. All I know is that I am scared going back to the “denial” phase because I already feel that I am moving forward. And that of course I can’t really keep looking at Isabella and keep on thinking “syndrome”, and “special” all the time. She needs to be given at least some credit that the time will come that she will show me what she is made of. So if this is what denial is like, then I guess, it’s a better place. Is this denial? Being realistic? Being more focused? I really don’t know for sure.
So, what have I learned from the last two weeks? I learned, 2 new things…
1) That I know there will be delays in Isabella’s development, I am viewing this possibility realistically, but this does not stop me from helping her work towards the big skills through helping her with the tiny baby steps.
2) That I should not worry about what’s going to happen to Isabella in the next 5, 10 years when I can focus on the NOW and help her through to attain the little skills on her own time and pace.
I was so happy that Isabella showed off what she has.
I’m a proud mama.
Thursday, February 18, 2010
God Is Good
I have always been a believer. I believe that God is the author of my life and he orchestrated the events that lead to where I am now.
I would have to admit, though, that in the past my faith was not that strong nor did I have an active involvement in my faith. I did not hear mass regularly nor were there any crosses or deity images found in my home. I was not doing your usual Christian duties but I made sure that I would treat others much like how I would like to be treated. I prayed, we taught our son some prayers, and we would talk about God in our home every now and then. I had a simple relationship with God.
About half a year ago my husband and I decided to work on our faith. We decided to join this church group for couples/families. We eventually started hearing mass every Sunday, had my son attend Sunday school, participate in charitable activities through the church, etc. My husband even joined the men’s church choir. We figured that we have been immensely blessed in our life and that the only thing seemingly lacking was stronger faith. So we started working on the spiritual aspect of our life. We were surrounded by godly people, we would gather in prayer and sing hymns of praise. We would discuss things that would help improve ourselves, our relationship to our spouses, and the rearing of our children. We supported and depended on each other. We are thankful for having met this people… and again we’ve been blessed.
As time went on, we found ourselves growing closer and closer to the lord. We have never felt this closeness to him before and it was bliss. At that point I can say that our spiritual relationship with the Lord has gone deeper… it was no longer (for lack of a better adjective) that of the convenient kind.
We prayed every day. We praised and thanked him for our jobs, for the food on our table, for the smile on our son’s face, for the gift of lessons we have learned yesterday, for the blessings of today, for the good promise of tomorrow, for the love in our home, for the joy in our hearts, for having good friends, for our health, for my unborn baby’s health, etc.
When complications in my pregnancy started to happen, we prayed harder. God is good and God will heal. I believed.
When Isabella was finally born and more bad news kept coming, we continued to pray. God is good and God will heal. I believed.
When the diagnosis came…. I stopped praying.
Was God really good?
Why did God not heal?
Where are you? I needed you, where are you?
Why me? Why my daughter?
Why did he choose me? I don’t want to be chosen for this task.
For comfort and encouragement people started telling me things such as, “Everything has a reason.”, “God has a plan.”
What’s his reason? To push me away?
What’s his plan? To crush my spirit?
Why now when I chose to be closer to him?
I then heard a voice in my head and it said…
“My child you didn’t choose to come to me, I called you because I knew you were going to really need me.”
He’s right... I do need him. I need him to take over, to take charge. He gave me this challenge and I need his help to get through this. He will give me the patience and the strength to keep moving forward. I need to let go and surrender to his will so that I can see it through to the promise that awaits me. He will carry me.
I trust you Lord.
God is good.
I believe.
---------------
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
I would have to admit, though, that in the past my faith was not that strong nor did I have an active involvement in my faith. I did not hear mass regularly nor were there any crosses or deity images found in my home. I was not doing your usual Christian duties but I made sure that I would treat others much like how I would like to be treated. I prayed, we taught our son some prayers, and we would talk about God in our home every now and then. I had a simple relationship with God.
About half a year ago my husband and I decided to work on our faith. We decided to join this church group for couples/families. We eventually started hearing mass every Sunday, had my son attend Sunday school, participate in charitable activities through the church, etc. My husband even joined the men’s church choir. We figured that we have been immensely blessed in our life and that the only thing seemingly lacking was stronger faith. So we started working on the spiritual aspect of our life. We were surrounded by godly people, we would gather in prayer and sing hymns of praise. We would discuss things that would help improve ourselves, our relationship to our spouses, and the rearing of our children. We supported and depended on each other. We are thankful for having met this people… and again we’ve been blessed.
As time went on, we found ourselves growing closer and closer to the lord. We have never felt this closeness to him before and it was bliss. At that point I can say that our spiritual relationship with the Lord has gone deeper… it was no longer (for lack of a better adjective) that of the convenient kind.
We prayed every day. We praised and thanked him for our jobs, for the food on our table, for the smile on our son’s face, for the gift of lessons we have learned yesterday, for the blessings of today, for the good promise of tomorrow, for the love in our home, for the joy in our hearts, for having good friends, for our health, for my unborn baby’s health, etc.
When complications in my pregnancy started to happen, we prayed harder. God is good and God will heal. I believed.
When Isabella was finally born and more bad news kept coming, we continued to pray. God is good and God will heal. I believed.
When the diagnosis came…. I stopped praying.
Was God really good?
Why did God not heal?
Where are you? I needed you, where are you?
Why me? Why my daughter?
Why did he choose me? I don’t want to be chosen for this task.
For comfort and encouragement people started telling me things such as, “Everything has a reason.”, “God has a plan.”
What’s his reason? To push me away?
What’s his plan? To crush my spirit?
Why now when I chose to be closer to him?
I then heard a voice in my head and it said…
“My child you didn’t choose to come to me, I called you because I knew you were going to really need me.”
He’s right... I do need him. I need him to take over, to take charge. He gave me this challenge and I need his help to get through this. He will give me the patience and the strength to keep moving forward. I need to let go and surrender to his will so that I can see it through to the promise that awaits me. He will carry me.
I trust you Lord.
God is good.
I believe.
---------------
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
Wednesday, February 17, 2010
Karma? OR Bad Luck?
“Karma” is a concept based on Indian religions which is an action or deed understood as that which causes the entire cycle of cause and effect. (from Wikepedia) In other words, it is payback for all the wrong that one person has done in this life or from a past life.
“Bad luck” is a belief in the bad fortune in life being caused by accident or chance, which happens beyond a person's control. (From Wikipedia)
Have these two words been in your vocabulary ever since you found out that your child has special needs? I have considered these terms on those many nights that I tried to answer the question “Why”.
Did it satisfactorily answer my question… NO.
You see, if I view having a special needs child as karma, then that would not really mingle well with the idea that I am being punished for my bad deeds with the life of a child… because that means that “life of a child” may equal a form of punishment. I mean, why would my child pay for my bad deeds that have passed, and even the ones that I’ve committed in my past life? It just does not seem fair that my child’s soul was chosen for me to payback the universe for the wrong I’ve done. What has my child done?
Now, let me look into the concept of bad luck. Since luck in itself happens by chance and my child’s syndrome happened by chance as well, then I guess it would be safe to say that “This is just my luck” Now, add an adjective before the word luck, then I can either view it as “good luck” or “bad luck”. Now if I keep on thinking about it as the latter type of luck, what good would it do me? Would that also mean that instead of viewing my child as a lucky charm, I will be viewing her as an “unlucky charm”? Come on, how many times have lucky charms really worked for you? Do you get what I’m saying? What about other occurrences that if you really think about it was a result of neglect to attend to circumstances that could have been prevented? Would you call that bad luck too?
Now, if these words keep on marinating inside my mind as the reason behind why I was given a child with special needs then I will just be forever trapped into the loop of punishing myself and feeling guilty that I had to pay the universe back for my bad deeds through the life of my child, and that carrying my child around will result in nothing but a series of unfortunate events… or that there will be nothing good ever that can come out from the point that she was diagnosed and onwards and there is nothing that I can do to undo it because it is beyond my control. My fate has been decided for me.
Now, to delve further, what about children with special needs that were diagnosed later (those ones that weren’t diagnosed until they entered school), does that mean that prior to finding out about the diagnosis you had “goodluck”? Now, what about those parents that are true Christians and believers, what is their karma? Why are they “paying” when they seem to be really really good people? What about the murderers? If the concept of karma was accurate then “all” murderers would have special children? I mean, a life for “a life” right?
It just does not really make sense to keep thinking about my circumstances that way.
And of course there are other words that we can attribute to this “chance occurrence that we can never really be sure of if it happened because we were paying for our bad deeds”… words such as “gift”, and “blessing”.
At the beginning, we hear these words often as a form of encouragement… and although it may not really make sense initially, would you rather really entertain the thought that you were given a special needs child because you've been cursed?
Why negate your “gift” or “blessing” with thoughts such as “karma” or “bad luck”? Instead, think of the words “challenge” or “test” then take on that challenge and move beyond being paralyzed by your views that what you are experiencing is a tragedy. Because though this happened by chance, by circumstances beyond your control, you have a choice to control your perception.And it is only through facing this challenge that you can one day reap the "blessings" of your "gift".
Our children are termed “special” for a reason. (redefine it and you’d swallow and digest it easier)
It’s all a matter of perspective, really.
And of faith… lots and lots of faith.
“Bad luck” is a belief in the bad fortune in life being caused by accident or chance, which happens beyond a person's control. (From Wikipedia)
Have these two words been in your vocabulary ever since you found out that your child has special needs? I have considered these terms on those many nights that I tried to answer the question “Why”.
Did it satisfactorily answer my question… NO.
You see, if I view having a special needs child as karma, then that would not really mingle well with the idea that I am being punished for my bad deeds with the life of a child… because that means that “life of a child” may equal a form of punishment. I mean, why would my child pay for my bad deeds that have passed, and even the ones that I’ve committed in my past life? It just does not seem fair that my child’s soul was chosen for me to payback the universe for the wrong I’ve done. What has my child done?
Now, let me look into the concept of bad luck. Since luck in itself happens by chance and my child’s syndrome happened by chance as well, then I guess it would be safe to say that “This is just my luck” Now, add an adjective before the word luck, then I can either view it as “good luck” or “bad luck”. Now if I keep on thinking about it as the latter type of luck, what good would it do me? Would that also mean that instead of viewing my child as a lucky charm, I will be viewing her as an “unlucky charm”? Come on, how many times have lucky charms really worked for you? Do you get what I’m saying? What about other occurrences that if you really think about it was a result of neglect to attend to circumstances that could have been prevented? Would you call that bad luck too?
Now, if these words keep on marinating inside my mind as the reason behind why I was given a child with special needs then I will just be forever trapped into the loop of punishing myself and feeling guilty that I had to pay the universe back for my bad deeds through the life of my child, and that carrying my child around will result in nothing but a series of unfortunate events… or that there will be nothing good ever that can come out from the point that she was diagnosed and onwards and there is nothing that I can do to undo it because it is beyond my control. My fate has been decided for me.
Now, to delve further, what about children with special needs that were diagnosed later (those ones that weren’t diagnosed until they entered school), does that mean that prior to finding out about the diagnosis you had “goodluck”? Now, what about those parents that are true Christians and believers, what is their karma? Why are they “paying” when they seem to be really really good people? What about the murderers? If the concept of karma was accurate then “all” murderers would have special children? I mean, a life for “a life” right?
It just does not really make sense to keep thinking about my circumstances that way.
And of course there are other words that we can attribute to this “chance occurrence that we can never really be sure of if it happened because we were paying for our bad deeds”… words such as “gift”, and “blessing”.
At the beginning, we hear these words often as a form of encouragement… and although it may not really make sense initially, would you rather really entertain the thought that you were given a special needs child because you've been cursed?
Why negate your “gift” or “blessing” with thoughts such as “karma” or “bad luck”? Instead, think of the words “challenge” or “test” then take on that challenge and move beyond being paralyzed by your views that what you are experiencing is a tragedy. Because though this happened by chance, by circumstances beyond your control, you have a choice to control your perception.And it is only through facing this challenge that you can one day reap the "blessings" of your "gift".
Our children are termed “special” for a reason. (redefine it and you’d swallow and digest it easier)
It’s all a matter of perspective, really.
And of faith… lots and lots of faith.
Monday, February 15, 2010
What Else Could Go Wrong?
Since my eighth month of pregnancy all I’ve had were a string of disaapointments.
First they tell me something was wrong with my baby’s heart…. And I freaked out.
Only to find out that there was something bigger that I needed to worry about…
When they checked on my baby’s heart, the doctor’s said that they found cysts in her head… only to find out that there was something much worse than that…
When we has the secondary ultrasound, not only did my baby have cysts in her brain, she also had an underdeveloped brain structure (corpus callosum), some fluid in her brain, and an enlarged cisterna magna… but it didn’t really end there…
When we had the fetal MRI, all the brain things were confirmed, and they added that they found a cyst by her gall bladder…
When they decided to take the baby out to check what’s really going on, they found she has a cleft palate…
When she was in the NICU she was jaundiced and they suspected that she had an infection because the numbers in her bloodwork were off… yes on top of everything else… but it was not really an infection…
When they keep testing her blood to figure out why the numbers were off, they found out that the reason it was off was because she has underdeveloped kidneys… so they set up a renal doctor appointment a week after she was home…. So we were excited that they set up an appointment with the renal doctor on the first week of January, which meant that we were going to bring her home last week of December, but…
When we went to the hospital to bring her home we found out that she failed her hearing test for both her ears… a follow up appointment with an audiologist suggested that although she may not be completely deaf, she has hearing loss…
When we brought her home, and she was gaining weight steadily, yes inspite of all the issues already… the rate of her weight gain started to slow down a bit because she kept on throwing up her feeds…
When we told the doctor about her feeding issues, we found out she has acid reflux… which of course made feeding all the more challenging… then...
When things started going steady, in spite of everything, and mommy is starting to feel positive about things and focused on feeds and giving her breastmilk that she makes sure she has a lot of stored in the freezer, before she goes back to work and before she started on her meds… she finds out that
When she was about to replenish the frozen breast milk stashed in the freezer inside the house, somebody switched off the freezer that was full of breast milk (as in really full of frozen breast milk) in the garage…. And all the breastmilk was spoiled.
But mommy is dry already because she has stopped pumping for two weeks ‘cause she needed to start on her meds…. So there is no more breastmilk that is supposed to help her daughter’s immune system and contribute to her overall health…
When breastmilk was the only thing that mommy feels good about being able to give her daughter… yes, even if she cannot nurse, mommy is able to give her some breastmilk… but now ALL of the breastmilk is gone…. Not just a bottle, mind you, but a freezer full of breastmilk is gone!
So what else could go wrong from here?
I’m just so done thinking that things are going to start looking up from here… i've been disappointed many times in the last 3 months... been disappointed way to much...
I’m just going to start thinking about worst case scenarios so I won’t be disappointed anymore... its tiring when HOPING seems such a futile attempt.
Seizures? Bring it on.
Orthopedic problems? Yeah sure.
Frequent ear infections? yes that too.
Immune issues? why not?
Failure to thrive as a fulfilled propechy? Of course.
Mortality? Been expecting that too.
What else could possibly go wrong?
First they tell me something was wrong with my baby’s heart…. And I freaked out.
Only to find out that there was something bigger that I needed to worry about…
When they checked on my baby’s heart, the doctor’s said that they found cysts in her head… only to find out that there was something much worse than that…
When we has the secondary ultrasound, not only did my baby have cysts in her brain, she also had an underdeveloped brain structure (corpus callosum), some fluid in her brain, and an enlarged cisterna magna… but it didn’t really end there…
When we had the fetal MRI, all the brain things were confirmed, and they added that they found a cyst by her gall bladder…
When they decided to take the baby out to check what’s really going on, they found she has a cleft palate…
When she was in the NICU she was jaundiced and they suspected that she had an infection because the numbers in her bloodwork were off… yes on top of everything else… but it was not really an infection…
When they keep testing her blood to figure out why the numbers were off, they found out that the reason it was off was because she has underdeveloped kidneys… so they set up a renal doctor appointment a week after she was home…. So we were excited that they set up an appointment with the renal doctor on the first week of January, which meant that we were going to bring her home last week of December, but…
When we went to the hospital to bring her home we found out that she failed her hearing test for both her ears… a follow up appointment with an audiologist suggested that although she may not be completely deaf, she has hearing loss…
When we brought her home, and she was gaining weight steadily, yes inspite of all the issues already… the rate of her weight gain started to slow down a bit because she kept on throwing up her feeds…
When we told the doctor about her feeding issues, we found out she has acid reflux… which of course made feeding all the more challenging… then...
When things started going steady, in spite of everything, and mommy is starting to feel positive about things and focused on feeds and giving her breastmilk that she makes sure she has a lot of stored in the freezer, before she goes back to work and before she started on her meds… she finds out that
When she was about to replenish the frozen breast milk stashed in the freezer inside the house, somebody switched off the freezer that was full of breast milk (as in really full of frozen breast milk) in the garage…. And all the breastmilk was spoiled.
But mommy is dry already because she has stopped pumping for two weeks ‘cause she needed to start on her meds…. So there is no more breastmilk that is supposed to help her daughter’s immune system and contribute to her overall health…
When breastmilk was the only thing that mommy feels good about being able to give her daughter… yes, even if she cannot nurse, mommy is able to give her some breastmilk… but now ALL of the breastmilk is gone…. Not just a bottle, mind you, but a freezer full of breastmilk is gone!
So what else could go wrong from here?
I’m just so done thinking that things are going to start looking up from here… i've been disappointed many times in the last 3 months... been disappointed way to much...
I’m just going to start thinking about worst case scenarios so I won’t be disappointed anymore... its tiring when HOPING seems such a futile attempt.
Seizures? Bring it on.
Orthopedic problems? Yeah sure.
Frequent ear infections? yes that too.
Immune issues? why not?
Failure to thrive as a fulfilled propechy? Of course.
Mortality? Been expecting that too.
What else could possibly go wrong?
Seeing Things Through My Son's Eyes
Ever since my husband and I were trying to get pregnant we were already mentally preparing my son for another child. Every night when we say his bedtime prayers I tell him to ask god for a baby brother and sister… and eventually this he would do even without me prompting him.
When we found out that we were pregnant we let him in on it right away and made sure he was involved. We would bring him to OB appointments and Ultrasound appointments. When my belly grew he would kiss it and talk to her baby sister inside. He was as excited as we were for the forthcoming addition to our family.
When we found out that something might be wrong with our baby girl, we weren’t sure how we were going to tell him about it. We didn’t.
When Isabella finally came to the world and we had to stay in the hospital or within the hospital vicinity and had to leave him at home with friends we made sure that we would call him every night and tell him sweet little messages that “came” from her baby sister. And when we do need to drive home to pick up some things or when we would stay for a night, we made sure that we have little things for him that “came” from his sister, we also showed him pictures of her that we took. Friends from work (since my son goes to the school where I work) would tell me that he would tell everyone that she already has a sister. He even asked that I print some pictures for her so he can show it to his friends.
One time, while her sister was still in the NICU and we had to briefly come home to pick up some stuff and we gave him one of those little presents that supposedly came from Isabella he goes, “Nanay, can I talk to your belly cause I’m going to tell the baby thank you for my surprise.” My husband and I both told him that the baby was no longer in my belly and that she was still in the hospital because the doctors are still checking her. He then goes, “Then I’ll just tell God to go tell Isay thank you because God is holding her.” (It was creepy and touching at the same time.)
When it was time for us to finally bring Isabella home, he was happy. He even said, “Nanay, I can’t stop smiling.”, and I asked, “Why?”, and he said “Because my baby sister is coming home.”
The moment he saw her he adored her. He would kiss her head and play with her tiny feet. When she’s sleeping he would bother her, because he wanted to play with her. We would explain that she still is too small to play with and she needs to sleep a lot so she can grow. We also needed to tell him that her baby sister is not a toy. On her first night home we were surprised to see him up with us at 3 in the morning also checking on the baby… him and our dog Missy. Looks like the whole family was so eager to meet the new addition to our family.
Sometimes he cannot stop himself that he would pry the baby’s eyes open and tell her “Wake up baby girl!”. He just really really loves her.
He even came up with a nickname for her all by himself.. he calls her “Buboy", sometimes "Booobie”… or “Boobs” for short, now we all call her "Buboy", “Boobie” or “Boobs” for short. (No, he does not know what the word Boob means).
To prepare him that his baby sister has special needs, one time I told him “Eloi, our baby Isay is special.” He then goes, “Special like your students, or like Tatay’s students?” I go, ‘I think, like Tatay’s students.” He took a moment to think about it and then he replied, “Oh, that’s ok Nanay. That’s okay.”
He seems to not see that she is not like any other baby. It didn’t bother him that she has an NG tube and that she is tinier than most babies. He does not see the features of the syndrome.
I’m not quite sure if he really understands what I meant by “special”, but I guess we did good exposing him to the students that we work with. Who knows, maybe he does find her sister special, perhaps even extra special.
At that moment, he taught me something wonderful…. to try and see the world just as he does… to see things from the eyes of a child.
------------------
I teach students with mild to moderate disabilities, while my husband teaches students with moderate to severe disabilities.
When we found out that we were pregnant we let him in on it right away and made sure he was involved. We would bring him to OB appointments and Ultrasound appointments. When my belly grew he would kiss it and talk to her baby sister inside. He was as excited as we were for the forthcoming addition to our family.
When we found out that something might be wrong with our baby girl, we weren’t sure how we were going to tell him about it. We didn’t.
When Isabella finally came to the world and we had to stay in the hospital or within the hospital vicinity and had to leave him at home with friends we made sure that we would call him every night and tell him sweet little messages that “came” from her baby sister. And when we do need to drive home to pick up some things or when we would stay for a night, we made sure that we have little things for him that “came” from his sister, we also showed him pictures of her that we took. Friends from work (since my son goes to the school where I work) would tell me that he would tell everyone that she already has a sister. He even asked that I print some pictures for her so he can show it to his friends.
One time, while her sister was still in the NICU and we had to briefly come home to pick up some stuff and we gave him one of those little presents that supposedly came from Isabella he goes, “Nanay, can I talk to your belly cause I’m going to tell the baby thank you for my surprise.” My husband and I both told him that the baby was no longer in my belly and that she was still in the hospital because the doctors are still checking her. He then goes, “Then I’ll just tell God to go tell Isay thank you because God is holding her.” (It was creepy and touching at the same time.)
When it was time for us to finally bring Isabella home, he was happy. He even said, “Nanay, I can’t stop smiling.”, and I asked, “Why?”, and he said “Because my baby sister is coming home.”
The moment he saw her he adored her. He would kiss her head and play with her tiny feet. When she’s sleeping he would bother her, because he wanted to play with her. We would explain that she still is too small to play with and she needs to sleep a lot so she can grow. We also needed to tell him that her baby sister is not a toy. On her first night home we were surprised to see him up with us at 3 in the morning also checking on the baby… him and our dog Missy. Looks like the whole family was so eager to meet the new addition to our family.
Sometimes he cannot stop himself that he would pry the baby’s eyes open and tell her “Wake up baby girl!”. He just really really loves her.
He even came up with a nickname for her all by himself.. he calls her “Buboy", sometimes "Booobie”… or “Boobs” for short, now we all call her "Buboy", “Boobie” or “Boobs” for short. (No, he does not know what the word Boob means).
To prepare him that his baby sister has special needs, one time I told him “Eloi, our baby Isay is special.” He then goes, “Special like your students, or like Tatay’s students?” I go, ‘I think, like Tatay’s students.” He took a moment to think about it and then he replied, “Oh, that’s ok Nanay. That’s okay.”
He seems to not see that she is not like any other baby. It didn’t bother him that she has an NG tube and that she is tinier than most babies. He does not see the features of the syndrome.
I’m not quite sure if he really understands what I meant by “special”, but I guess we did good exposing him to the students that we work with. Who knows, maybe he does find her sister special, perhaps even extra special.
At that moment, he taught me something wonderful…. to try and see the world just as he does… to see things from the eyes of a child.
------------------
I teach students with mild to moderate disabilities, while my husband teaches students with moderate to severe disabilities.
So How Are You?
A week from today I’ll be coming back to work. I’m sure that I will be asked the question…
“So, how are you?” (with head slightly tilted to the side)
I’ve been asked this question for the nth time, and although answering this question for the nth time makes me want to scream, I’m sure people have good intentions and are just genuinely concerned about how I am.
So how am I doing?
My response is (and it has not changed from the last time I was asked the same question)… I am fine.
The word fine does not connote a feeling of ecstasy nor negativity… the word “fine” just is.
So, there… I’m doing fine.
“So, how are you?” (with head slightly tilted to the side)
I’ve been asked this question for the nth time, and although answering this question for the nth time makes me want to scream, I’m sure people have good intentions and are just genuinely concerned about how I am.
So how am I doing?
My response is (and it has not changed from the last time I was asked the same question)… I am fine.
The word fine does not connote a feeling of ecstasy nor negativity… the word “fine” just is.
So, there… I’m doing fine.
Friday, February 12, 2010
Person 1: What makes you think that your problems are bigger than everybody else’s?
Person 2: The fact that they’re mine makes them bigger than everybody else’s.
People have a tendency to be self absorbed when they have problems. This is true even for myself. You get consumed by it, that it becomes your world and perhaps somewhere there you drag others into it. For sympathy perhaps? or for just plain “ I want to keep talking about MY problems in the off chance that it might all go away in the process of my letting it out.”
Initially you get the sympathetic looks and sympathetic queries and somewhere there you do/did enjoy the “pity party”. Eventually though, and I understand why, it can get old and tiring hearing someone whine and complain about how sad they are or how unfair life is. Same with me.. and I got tired too of listening to myself
I understand that sometimes when one is faced with a problem, all they feel like doing is dig a hole and bury themselves in it. I felt the same way and I initially didn’t have plans of coming out from that hole until I got tired. It can get pretty exhausting feeling frustrated, angry, confused, and miserable. And when you get to the point that you are just so worn out, you realize that you have got to do something else about it… it is time to MOVE ON.
Think about it.. what good would it do staying buried underground? What good would it do walking around feeling dead inside? What good would it do when it does not change anything? YOU HAVE GOT TO BE THE ONE TO CHANGE.
Easier said than done, right? I agree. Believe me it was not easy for me either… and up to now I still find myself wanting to crawl back into my hole and find comfort in melancholy. But why find comfort in such strangeness?
The world is waiting and is happening without me in it… I can choose to stay miserable or I can choose to relearn how to find joy in my life. Life can get normal again (I read on other WHS parent’s blogs and pictured myself wearing their shoes). Right, it may be riddled with endless doctor’s appointments, and perhaps a limited repertoire of activities… but it is possible to achieve that sense of normalcy back.
It’s not an easy task (seems like I’m preaching to the choir here) But I have got to stop looking at my problems through a microscope… zoom out! The world has bigger and more serious problems...wars, famine, pestilence. Think about it? I have a child… I have new life! I’ve got to start nurturing that life!
When all this started it was all about ME, ME, ME… when really, it should be mostly about HER.
“When we can’t piece together the puzzle of our own lives, remember that the best view of a puzzle is from above. Let HIM help you put it together.”- Amethyst Snow Rivers
Person 2: The fact that they’re mine makes them bigger than everybody else’s.
People have a tendency to be self absorbed when they have problems. This is true even for myself. You get consumed by it, that it becomes your world and perhaps somewhere there you drag others into it. For sympathy perhaps? or for just plain “ I want to keep talking about MY problems in the off chance that it might all go away in the process of my letting it out.”
Initially you get the sympathetic looks and sympathetic queries and somewhere there you do/did enjoy the “pity party”. Eventually though, and I understand why, it can get old and tiring hearing someone whine and complain about how sad they are or how unfair life is. Same with me.. and I got tired too of listening to myself
I understand that sometimes when one is faced with a problem, all they feel like doing is dig a hole and bury themselves in it. I felt the same way and I initially didn’t have plans of coming out from that hole until I got tired. It can get pretty exhausting feeling frustrated, angry, confused, and miserable. And when you get to the point that you are just so worn out, you realize that you have got to do something else about it… it is time to MOVE ON.
Think about it.. what good would it do staying buried underground? What good would it do walking around feeling dead inside? What good would it do when it does not change anything? YOU HAVE GOT TO BE THE ONE TO CHANGE.
Easier said than done, right? I agree. Believe me it was not easy for me either… and up to now I still find myself wanting to crawl back into my hole and find comfort in melancholy. But why find comfort in such strangeness?
The world is waiting and is happening without me in it… I can choose to stay miserable or I can choose to relearn how to find joy in my life. Life can get normal again (I read on other WHS parent’s blogs and pictured myself wearing their shoes). Right, it may be riddled with endless doctor’s appointments, and perhaps a limited repertoire of activities… but it is possible to achieve that sense of normalcy back.
It’s not an easy task (seems like I’m preaching to the choir here) But I have got to stop looking at my problems through a microscope… zoom out! The world has bigger and more serious problems...wars, famine, pestilence. Think about it? I have a child… I have new life! I’ve got to start nurturing that life!
When all this started it was all about ME, ME, ME… when really, it should be mostly about HER.
“When we can’t piece together the puzzle of our own lives, remember that the best view of a puzzle is from above. Let HIM help you put it together.”- Amethyst Snow Rivers
Word Found Its Way Through The Grapevine
Do you know that feeling of excited anticipation for the arrival of your little bundle of joy months, weeks, days before you’re due? Well I didn’t have that. What I felt weeks and days before my delivery date was worry and confusion.
Do you know how when you finally have your baby, you can’t wait to show him/her to the whole world and brag about him/her? Well, I initially didn’t have that either.
I was unsure on who to tell and how to tell people that I was anticipating the arrival of a child with special needs. Weeks after my daughter’s birth I was adamant on telling people that my daughter has a syndrome, a rare genetic syndrome called Wolf Hirschorn Syndrome.
But word found it’s way around and eventually people that I am not even close to were made aware that I gave birth to a “special” child. Did this make me upset? Well, not really. For one it saved me the time to explain, and the effort to let them on in the historical accounts of events.
It saved me from telling and retelling the same story over and over again… it saved me from telling the story from the very beginning and I was saved from remembering the shock of finding out and the talking about the pain of dealing with it.
I am thankful that word found it’s way around because I can start telling my story from “here”. Because to start telling my story from “there”, I might find myself crying again and honestly I am tired of crying. I would see that sympathetic-head-tilted-on-the-side-look and I would feel pity for myself, and frankly I am tired of that too.
So thank you really for those who told and retold and keep retelling on my behalf because that gives me the “here” to start from because being “there” was not really doing me any good.
Do you know how when you finally have your baby, you can’t wait to show him/her to the whole world and brag about him/her? Well, I initially didn’t have that either.
I was unsure on who to tell and how to tell people that I was anticipating the arrival of a child with special needs. Weeks after my daughter’s birth I was adamant on telling people that my daughter has a syndrome, a rare genetic syndrome called Wolf Hirschorn Syndrome.
But word found it’s way around and eventually people that I am not even close to were made aware that I gave birth to a “special” child. Did this make me upset? Well, not really. For one it saved me the time to explain, and the effort to let them on in the historical accounts of events.
It saved me from telling and retelling the same story over and over again… it saved me from telling the story from the very beginning and I was saved from remembering the shock of finding out and the talking about the pain of dealing with it.
I am thankful that word found it’s way around because I can start telling my story from “here”. Because to start telling my story from “there”, I might find myself crying again and honestly I am tired of crying. I would see that sympathetic-head-tilted-on-the-side-look and I would feel pity for myself, and frankly I am tired of that too.
So thank you really for those who told and retold and keep retelling on my behalf because that gives me the “here” to start from because being “there” was not really doing me any good.
Thursday, February 11, 2010
Not Because of the Common Cold
The genetics doctors were right. Not everyone will understand what the word syndrome or genetic disorder means. Some people, even family, will think that it all genetic disorders are hereditary (But of course no one would really think that it came from their side of the family.. and sometimes they are hereditary) or that it was because of something that was done during the course of pregnancy.
One time this lady told me that she remembers that I had frequent colds while I was pregnant. She then adds this could have happened because of that. I then added that I have allergies (rhinitis), but she still insists that it could be because of my frequent morning colds. It almost seemed like she was so certain of her “hunch”…perhaps she really felt it in her gut.
Truth is WHS was not caused by anything that I did, or didn’t do, or overdid or didn’t do enough. WHS was a result of a chromosomal abnormality. It happened during the moment of conception when the mother and father’s chromosomes unite to form a new, unique human being. Chromosomes are long strands of DNA complexed with proteins and RNA that condense and allow for equal distribution of the genes when cells divide. Each chromosome contains hundreds or thousands of genes, and every cell needs to have two copies of each chromosome in order to maintain genetic balance. At the time of conception, an extra copy or missing copy of a chromosome or even a part of a chromosome disrupted normal development and thus resulted in syndromes that are caused by chromosomal abnormalities. This is true for Wolf Hirschorn Syndrome where the disruption occurred in the 4th chromosome (a portion of the arm of the 4th chromosome is short or missing). It all happened during conception... before I even knew I was pregnant.
So there, WHS happened not because I stood in front of the microwave while I was warming up my soup. It was not because I used the photocopying machine frequently while I was pregnant. It was not because of pesticides that I might have been exposed to since the school that I work with is surrounded by fields. It was not because I may have accidentally sniffed some chemicals while I was having my nails done at the salon. It was not because I ate overcooked broccoli or a banana with dark spots. It was not because I had one too many fish. It was not because I had the flu shot. Not because of the swine flu shot either. It was not because I let the dog lick my face or because I frequently went up and down the stairs. It was not caused by that one time that I had to take my prenatal vitamins in the evening because I forgot to take it in the morning, nor was it because I had missed taking my prenatal vitamins for one, maybe two days. It was not because I ate the cracker that fell off the floor that I picked up after 5 seconds. It was not because I happened to be with special needs children for the most part of my day, nor is it because I happened to watch a documentary on HBO about children with special needs while I was pregnant. It was not because roses are red or that violets are blue. AND It is most certainly and definitely is not, and I’m sorry to burst your bubble, because I had a cold.
One time this lady told me that she remembers that I had frequent colds while I was pregnant. She then adds this could have happened because of that. I then added that I have allergies (rhinitis), but she still insists that it could be because of my frequent morning colds. It almost seemed like she was so certain of her “hunch”…perhaps she really felt it in her gut.
Truth is WHS was not caused by anything that I did, or didn’t do, or overdid or didn’t do enough. WHS was a result of a chromosomal abnormality. It happened during the moment of conception when the mother and father’s chromosomes unite to form a new, unique human being. Chromosomes are long strands of DNA complexed with proteins and RNA that condense and allow for equal distribution of the genes when cells divide. Each chromosome contains hundreds or thousands of genes, and every cell needs to have two copies of each chromosome in order to maintain genetic balance. At the time of conception, an extra copy or missing copy of a chromosome or even a part of a chromosome disrupted normal development and thus resulted in syndromes that are caused by chromosomal abnormalities. This is true for Wolf Hirschorn Syndrome where the disruption occurred in the 4th chromosome (a portion of the arm of the 4th chromosome is short or missing). It all happened during conception... before I even knew I was pregnant.
So there, WHS happened not because I stood in front of the microwave while I was warming up my soup. It was not because I used the photocopying machine frequently while I was pregnant. It was not because of pesticides that I might have been exposed to since the school that I work with is surrounded by fields. It was not because I may have accidentally sniffed some chemicals while I was having my nails done at the salon. It was not because I ate overcooked broccoli or a banana with dark spots. It was not because I had one too many fish. It was not because I had the flu shot. Not because of the swine flu shot either. It was not because I let the dog lick my face or because I frequently went up and down the stairs. It was not caused by that one time that I had to take my prenatal vitamins in the evening because I forgot to take it in the morning, nor was it because I had missed taking my prenatal vitamins for one, maybe two days. It was not because I ate the cracker that fell off the floor that I picked up after 5 seconds. It was not because I happened to be with special needs children for the most part of my day, nor is it because I happened to watch a documentary on HBO about children with special needs while I was pregnant. It was not because roses are red or that violets are blue. AND It is most certainly and definitely is not, and I’m sorry to burst your bubble, because I had a cold.
Making Connections
It is hard to describe the feelings that rush through a parent upon finding out that their child is "special". There are no words that can quantify the feelings of loss and uncertainty when you are faced with the reality that you are going to parent a child with special needs.
The pain and worry would be something that only another mother could understand, but the grief and anguish is something that only another parent with a special needs child can relate to. Will we ever get to the point that we finally understand?
In my search for answers on the world wide web i stumbled upon You Tube videos of children with WHS. Seeing pictures and videos of these children gave me a sense of hope. I was able to picture what it might be like for my daughter in the years ahead (although no 2 WHS children will be the same... so we should not compare our children with them either). I also happened upon a blog site of another 4p-mother. I got connected with her and left a comment. She got me connected with these other WHS parents (Thanks Lauren!) and I browsed through their blogsites and felt validated that I was not alone in what I was going through. I realized that I should not be burdened by my own problems because we each have our own crosses to bear... everyone does.
For what seems like a long time, I felt like myself again. I found myself laughing that day and I felt this empty relief in my chest.
In my search for answers on the internet I found a network of people I can connect with, I found the my world and their world connect. Have I really stumbled upon the answers I was searching for? Perhaps not... we are all learning how to deal with our children day by day and as we go along.
I found a kinship with these people... and I find that that in itself feels like I stumbled upon a miracle.
Thank you to all you WHS parents who have been gracious and open about your experiences with your children!
Thank you also to Liz and J.... you were my first connection to the experience of parenting a child with special needs. Just the idea that you were steps ahead of me when it comes to accepting our realities encourages me that sunshines are just days ahead.
The pain and worry would be something that only another mother could understand, but the grief and anguish is something that only another parent with a special needs child can relate to. Will we ever get to the point that we finally understand?
In my search for answers on the world wide web i stumbled upon You Tube videos of children with WHS. Seeing pictures and videos of these children gave me a sense of hope. I was able to picture what it might be like for my daughter in the years ahead (although no 2 WHS children will be the same... so we should not compare our children with them either). I also happened upon a blog site of another 4p-mother. I got connected with her and left a comment. She got me connected with these other WHS parents (Thanks Lauren!) and I browsed through their blogsites and felt validated that I was not alone in what I was going through. I realized that I should not be burdened by my own problems because we each have our own crosses to bear... everyone does.
For what seems like a long time, I felt like myself again. I found myself laughing that day and I felt this empty relief in my chest.
In my search for answers on the internet I found a network of people I can connect with, I found the my world and their world connect. Have I really stumbled upon the answers I was searching for? Perhaps not... we are all learning how to deal with our children day by day and as we go along.
I found a kinship with these people... and I find that that in itself feels like I stumbled upon a miracle.
Thank you to all you WHS parents who have been gracious and open about your experiences with your children!
Thank you also to Liz and J.... you were my first connection to the experience of parenting a child with special needs. Just the idea that you were steps ahead of me when it comes to accepting our realities encourages me that sunshines are just days ahead.
Wednesday, February 10, 2010
Isabella's 2nd Month
Isabella is now 2 months old.
She still does not make eye contact, but I feel that she can hold her gaze on an object or on me much longer than a brief second.
She still does not socially smile or coo, but she has better head control.
She loves getting a bath and getting her daily evening massage. She already has a pain cry, an "I'm uncomfortable cry", an 'I'm hungry cry", and a fake cry.
She cries for her Nanay and stops when Nanay holds her.
As of today she weighs 6 lbs 11 oz. We are almost done wearing preemie sized clothes.
To read about Isabella's birth history, click here
She still does not make eye contact, but I feel that she can hold her gaze on an object or on me much longer than a brief second.
She still does not socially smile or coo, but she has better head control.
She loves getting a bath and getting her daily evening massage. She already has a pain cry, an "I'm uncomfortable cry", an 'I'm hungry cry", and a fake cry.
She cries for her Nanay and stops when Nanay holds her.
As of today she weighs 6 lbs 11 oz. We are almost done wearing preemie sized clothes.
To read about Isabella's birth history, click here
Tuesday, February 09, 2010
My Daughter is Unique
My daughter is her own person. She will grow up to be her unique self. This is true with any child, special or not.
A big mistake that parents sometimes make is to compare their children to others. Today I found myself comparing my daughter to someone else's.
I felt sad because the other babies her age were already cooing and smiling meanwhile my daughter would only cry, make grunting sounds and squeaky noises. She would not even really look at me and we have not seen her flash us a smile to let us know that she knows we're there. She would not visually track objects, and her eye contact was brief and inconsistent (which means not quite making eye contact after all). I felt pity for her and for myself.
I told my husband about this and to try and cheer me up he goes...
"Our daughter may not coo or smile or make eye contact just yet... but it seems like the squeaky noises she makes is a form of communication... much like echolocation. Talk about talent!"
I should not compare my daughter. Not to other children her age, not to how her brother was when he was her age, and not even to other special needs children her age. She will be her own person with her own set of skills and talents and strengths and weaknesses... with her own temperament and demeanor and attitude. She will grow up into a unique person that will just find her way deeper into our hearts.
She will wow us away.... and we will cheer on and find joy with every milestone she makes in her own unique perfect pace and timing.
I can't wait.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
by Emily Perl Kingsley
National Down Syndrome Congress
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
by Emily Perl Kingsley
National Down Syndrome Congress
And God Said "No."
I asked God to take away my pride. And God said "No."
He said it was not for him to take away, but for me to give it up.
I asked God to make my handicapped child whole. And God said "No."
He said her spirit was whole, her body was only temporary.
I asked God to grant me patience. And God said "No."
He said patience is a by-product of tribulations.
It isn't granted, it is earned.
I asked God to give me happiness. And God said "No."
He said he gives me blessings, happiness is up to me.
I asked God to spare me pain. And God said "No."
He said suffering draws you apart from worldly cares and
brings you closer to me.
I asked God to make my spirit grow. And God said "No."
He said I must grow on my own.
But he will prune me to make me fruitful.
I asked God for all things that I might enjoy life. And God said "No."
He said, "I will give you life, that you may enjoy all things."
I ask God to help me LOVE others, as much as he loves me.
And God said, "Ah, finally you have the idea."
- Author Unknown
He said it was not for him to take away, but for me to give it up.
I asked God to make my handicapped child whole. And God said "No."
He said her spirit was whole, her body was only temporary.
I asked God to grant me patience. And God said "No."
He said patience is a by-product of tribulations.
It isn't granted, it is earned.
I asked God to give me happiness. And God said "No."
He said he gives me blessings, happiness is up to me.
I asked God to spare me pain. And God said "No."
He said suffering draws you apart from worldly cares and
brings you closer to me.
I asked God to make my spirit grow. And God said "No."
He said I must grow on my own.
But he will prune me to make me fruitful.
I asked God for all things that I might enjoy life. And God said "No."
He said, "I will give you life, that you may enjoy all things."
I ask God to help me LOVE others, as much as he loves me.
And God said, "Ah, finally you have the idea."
- Author Unknown
Mothers Of Special Children
Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for
propagation with great care and deliberation. As he observes, he instructs
his angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter,
patron saint, Cecilia.
"Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to
profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped
child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a handicapped child to a mother who does
not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wear off, she'll
handle it.
"I watched her today. She has that feeling of self and independence that is
so rare and so necessary in a mother. You see, the child I'm going to give
her has his own world. She has to make it live in her world, and that's not
going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just
enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word.' She will never consider a
'step' ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle and know it! When she describes a tree or a sunset
to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see . . . ignorance,
cruelty, prejudice . . . and allow her to rise above them. She will never
be alone. I will be at her side every minute of every day of her life,
because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."
- Erma Bombeck, May, 1980
pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for
propagation with great care and deliberation. As he observes, he instructs
his angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter,
patron saint, Cecilia.
"Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to
profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped
child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a handicapped child to a mother who does
not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wear off, she'll
handle it.
"I watched her today. She has that feeling of self and independence that is
so rare and so necessary in a mother. You see, the child I'm going to give
her has his own world. She has to make it live in her world, and that's not
going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just
enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word.' She will never consider a
'step' ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle and know it! When she describes a tree or a sunset
to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see . . . ignorance,
cruelty, prejudice . . . and allow her to rise above them. She will never
be alone. I will be at her side every minute of every day of her life,
because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."
- Erma Bombeck, May, 1980
Heavens Very Special Child
A meeting was held quite far from earth
It's time again for another birth
Said the angel to the Lord above
This special child will need much love
His progress may be very slow
Accomplishments he may not show
And he'll require extra care
from the folks he meets down there
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped
So let's be careful where he's sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They'll not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privileges given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is "HEAVEN'S VERY SPECIAL CHILD"
- Author Unknown
-----------
Thank you Sonia for sending this to me
It's time again for another birth
Said the angel to the Lord above
This special child will need much love
His progress may be very slow
Accomplishments he may not show
And he'll require extra care
from the folks he meets down there
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped
So let's be careful where he's sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They'll not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privileges given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is "HEAVEN'S VERY SPECIAL CHILD"
- Author Unknown
-----------
Thank you Sonia for sending this to me
The Special Child
I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of - I see that as well.
I am aware of much - whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world's standards -
great strides in development that you can credit yourself.
I do not give you understanding as you know it.
What I give you is so much more valuable - I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own,
working harder, seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependant on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.
If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
- Author Unknown
-------
The first time I read this was when I was in college.
You often pity me, I see it in your eyes.
You wonder how much I am aware of - I see that as well.
I am aware of much - whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world's standards -
great strides in development that you can credit yourself.
I do not give you understanding as you know it.
What I give you is so much more valuable - I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own,
working harder, seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependant on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.
If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
- Author Unknown
-------
The first time I read this was when I was in college.
Blog Writing
Writing has always been a good form of release for me. Since crying was not really doing me any good in the catharsis that i needed, a friend suggested that I blog about it. Why not? I have not blogged in a long time. but, instead of writing in my other blog, I decided to create a blog dedicated to Isabella.
As you can see from the posted entries (so far), these were all posted in the same month. I was keeping track of my pregnancy and story, and feelings in a notebook but it never crossed my mind to blog about it. I wasn't sure if it was something I would like to share about. I wasn't sure if people would be understanding of the feelings that i am going through. I wasn't sure and I wouldn't want to be judged.
It initially didn't cross my mind to write and share this openly in the chance that other WHS parents may find it.
Well, I hope they do find this... I hope that when they do it can give them the sense that they are not alone, that it is okay to cry and feel angry, that it is okay to grieve for their loss. i hope that through this they find that there is the promise of brighter days.
As i am using writing as an instrument for me to get through this, I hope that this can help them go through it as well.
As you can see from the posted entries (so far), these were all posted in the same month. I was keeping track of my pregnancy and story, and feelings in a notebook but it never crossed my mind to blog about it. I wasn't sure if it was something I would like to share about. I wasn't sure if people would be understanding of the feelings that i am going through. I wasn't sure and I wouldn't want to be judged.
It initially didn't cross my mind to write and share this openly in the chance that other WHS parents may find it.
Well, I hope they do find this... I hope that when they do it can give them the sense that they are not alone, that it is okay to cry and feel angry, that it is okay to grieve for their loss. i hope that through this they find that there is the promise of brighter days.
As i am using writing as an instrument for me to get through this, I hope that this can help them go through it as well.
Looking for Other WHS children
Being the rare genetic disorder that it is, there are no websites targeted for strategies on working with children with WHS specifically. Research on outlook is scarce and most of what can be read are comprised of definitions and characteristics of the syndrome. I was craving for more in depth information. The information that does not merely answer the WHAT, but the HOW.
In my years of teaching in special education and with the varied kinds of disabilities that I have encountered, I have not, nor has my husband, met anyone with Wolf Hirschorn Syndrome. I feel that if I have at least met someone I can better picture what lies ahead for my daughter and for us. I feel that it would help my dealing with a child with this syndrome become more "tangible". My pediatrician has not met anyone with WHS. We didn't get lucky either when we asked around in our circle of special education colleagues. The infant specialist and occupational therapist working with her has not met anyone either. If someone can just let me observe an individual with WHS for an hour my mind might be able to concoct strategies that I may be able to employ as a raise my daughter.
My husband and I went online to do a search. I tried getting in touch with other WHS parents through parent support forums, but no one has replied on any of my queries. Signing up for WHS parent websites that require a membership would be my last resort. I did find some you tube videos of children with WHS, which gave me a flickering sense of hope, but I still wanted personal contact... I wanted first hand experience (i mean apart form my daughter).
Perhaps... through blogging about my daily interactions and experience raising my daughter, a newly ordained WHS parent can find the information that s/he needs. information that I was not able to find.
--------------
When we met with our renal doctor, he says that he has patients with WHS. Although I cannot have him arrange a meeting for me to interact and talk with these children personally, he did say that WHS children are very similar to children with Down Syndrome. They seem to not manifest major behavior issues and are sociable and affectionate. Most of them do not talk and are physically smaller. He also said that they have mental retardation, and it seems that they are on the lower IQ range compared to children with Down Syndrome. He also added that some of his patients have seizures but most of them have seizures that resolved itself through time.
Having heard this from a person who has personally met someone with WHS was uplifting for me. He was sort of my bridge to other children with WHS. It was my closest encounter via a third-person-kind. (hehehe)
In my years of teaching in special education and with the varied kinds of disabilities that I have encountered, I have not, nor has my husband, met anyone with Wolf Hirschorn Syndrome. I feel that if I have at least met someone I can better picture what lies ahead for my daughter and for us. I feel that it would help my dealing with a child with this syndrome become more "tangible". My pediatrician has not met anyone with WHS. We didn't get lucky either when we asked around in our circle of special education colleagues. The infant specialist and occupational therapist working with her has not met anyone either. If someone can just let me observe an individual with WHS for an hour my mind might be able to concoct strategies that I may be able to employ as a raise my daughter.
My husband and I went online to do a search. I tried getting in touch with other WHS parents through parent support forums, but no one has replied on any of my queries. Signing up for WHS parent websites that require a membership would be my last resort. I did find some you tube videos of children with WHS, which gave me a flickering sense of hope, but I still wanted personal contact... I wanted first hand experience (i mean apart form my daughter).
Perhaps... through blogging about my daily interactions and experience raising my daughter, a newly ordained WHS parent can find the information that s/he needs. information that I was not able to find.
--------------
When we met with our renal doctor, he says that he has patients with WHS. Although I cannot have him arrange a meeting for me to interact and talk with these children personally, he did say that WHS children are very similar to children with Down Syndrome. They seem to not manifest major behavior issues and are sociable and affectionate. Most of them do not talk and are physically smaller. He also said that they have mental retardation, and it seems that they are on the lower IQ range compared to children with Down Syndrome. He also added that some of his patients have seizures but most of them have seizures that resolved itself through time.
Having heard this from a person who has personally met someone with WHS was uplifting for me. He was sort of my bridge to other children with WHS. It was my closest encounter via a third-person-kind. (hehehe)
Feeding Frenzy and Frustrations
Ever since we brought Isabella home we were very focused on her feeding. We made sure that she is fed every three hours. We made sure that her gaining weight was our number one priority.
We made sure that her milk is fortified and she is given enough volume per feeding. Little by little we would up her volume intake and because of this she was gaining an ounce a day.
However, just recently feeding her seems like a challenge. She seems to be experiencing acid reflux and would throw up full feedings. It was beginning to feel frustrating because feeding became a messy experience and this affected the rate of her weight gain.
We tried giving her half her volume feeds at a time and feeding her the other half an hour later to make sure that the milk has already settled down... but she would still throw up.
We tried giving her less milk bringing her volume feed down by 10mls. Still throwing up.
We would feed her in an inclined position and we would keep her up after feeds but she would still throw up. We were scared that this could lead to her "failure to thrive".
Eventually we read that we can help baby keep her food down by putting her on her tummy and inclined at about a 30 degree angle. We tried it.... and so far it seems to be working.
We made sure that her milk is fortified and she is given enough volume per feeding. Little by little we would up her volume intake and because of this she was gaining an ounce a day.
However, just recently feeding her seems like a challenge. She seems to be experiencing acid reflux and would throw up full feedings. It was beginning to feel frustrating because feeding became a messy experience and this affected the rate of her weight gain.
We tried giving her half her volume feeds at a time and feeding her the other half an hour later to make sure that the milk has already settled down... but she would still throw up.
We tried giving her less milk bringing her volume feed down by 10mls. Still throwing up.
We would feed her in an inclined position and we would keep her up after feeds but she would still throw up. We were scared that this could lead to her "failure to thrive".
Eventually we read that we can help baby keep her food down by putting her on her tummy and inclined at about a 30 degree angle. We tried it.... and so far it seems to be working.
Finding Positives
It is a positive that my daughter has partial agenesis of the corpus callosum as opposed to complete agenesis.
It is a positive that sodium bicarbonate meds are able to regulate her creatinine levels to help her kidney function properly. Dialysis seems like a far away option.
It is a positive that the audiologist suspects only some hearing loss as opposed to her being completely deaf.
It is a positive that she is fed via NG tube because we can make sure that she still gets her full feedings to make sure she keeps steadily gains weight. Another positive is that NG tubes make early morning feedings easier.
It is a positive that she only has a cleft in her soft palate. Repair would be easier and recovery would be quicker.
it is a positive that the skin on my hands became more smooth, more supple and younger looking, from all the baby oil that I get on my hands and fingers whenever I give my daughter her daily evening infant massage.
It is a positive that, being of Filipino descent, Isabella does not have a prominent nose bridge. The "greek warrior helmet" look seems to not show that much in her facial features.
It is a positive that Lucile Packard Children''s hospital is only about 2 hours away from where we live. It is one of the best hospitals in the US. Other families come from different states just to seek treatment here.
It is a positive that her NICU stay gave me time to recover from C section and when she came home I was physically better able to care for her.
It is a positive that she will be smaller in size compared to other children her age. This will save me from buying her clothes and I get to have and enjoy having a baby/child longer.
It is a positive that my daughter knows that I'm there. She may not be making eye contact with me just yet but it seems that when she is fussy the only person that can calm her down is me. She can tell if I am the one carrying her.
It is a positive that WHS is characterized by a weak cry in infants. Our nights are less stressful because we do not have a loud wailing infant depriving us of sleep.
It is a positive that we have double insurance coverage. We do not shoulder any major medical costs. Just imagine the major strain it will make in our finances if we have to.
It is a positive that I get to save on buying formula. Since she is fed a special formula due to her renal issues, her milk is delivered to our home and is covered by insurance.
It is a positive that we are in the US. The services that my daughter needs are available and attainable. Resources for parents are also accessible.
It is a positive that my husband and I are both special education teachers. We can work closely with the people working with her to ensure that she maximizes her potential. I am thankful for my education and work experiences.
It is a positive that my husband works for the County Office of Education. He can consult and coordinate services for my daughter much easier.
It is a positive that I have a supportive circle of friends. They are my family in the US and I know i can depend on them for anything anytime.
it is a positive that through this experience I have met and bonded with other parents with special needs children. This made me feel that i was not alone and the feelings I am going through were all normal.
It is a positive that I feel that through this experience I can better relate to the parents of the children I am working with.
It is a positive that my son takes his big brother duty seriously. He adores her baby sister and helps take care of her the best way he can.
It is a positive that through this experience (and there will be more to come) the bond between me and my husband is stronger than ever.
it is a positive that this is beyond my control because I can completely let go and surrender it to God's will. I anticipate my realization of his purpose and the fulfillment of his good promise. I am thankful that my faith is in the process being strengthened and that I am being humbled.
It is a positive that I am finding all these positives... it looks like the change in my perspective is finally happening.
It is a positive that sodium bicarbonate meds are able to regulate her creatinine levels to help her kidney function properly. Dialysis seems like a far away option.
It is a positive that the audiologist suspects only some hearing loss as opposed to her being completely deaf.
It is a positive that she is fed via NG tube because we can make sure that she still gets her full feedings to make sure she keeps steadily gains weight. Another positive is that NG tubes make early morning feedings easier.
It is a positive that she only has a cleft in her soft palate. Repair would be easier and recovery would be quicker.
it is a positive that the skin on my hands became more smooth, more supple and younger looking, from all the baby oil that I get on my hands and fingers whenever I give my daughter her daily evening infant massage.
It is a positive that, being of Filipino descent, Isabella does not have a prominent nose bridge. The "greek warrior helmet" look seems to not show that much in her facial features.
It is a positive that Lucile Packard Children''s hospital is only about 2 hours away from where we live. It is one of the best hospitals in the US. Other families come from different states just to seek treatment here.
It is a positive that her NICU stay gave me time to recover from C section and when she came home I was physically better able to care for her.
It is a positive that she will be smaller in size compared to other children her age. This will save me from buying her clothes and I get to have and enjoy having a baby/child longer.
It is a positive that my daughter knows that I'm there. She may not be making eye contact with me just yet but it seems that when she is fussy the only person that can calm her down is me. She can tell if I am the one carrying her.
It is a positive that WHS is characterized by a weak cry in infants. Our nights are less stressful because we do not have a loud wailing infant depriving us of sleep.
It is a positive that we have double insurance coverage. We do not shoulder any major medical costs. Just imagine the major strain it will make in our finances if we have to.
It is a positive that I get to save on buying formula. Since she is fed a special formula due to her renal issues, her milk is delivered to our home and is covered by insurance.
It is a positive that we are in the US. The services that my daughter needs are available and attainable. Resources for parents are also accessible.
It is a positive that my husband and I are both special education teachers. We can work closely with the people working with her to ensure that she maximizes her potential. I am thankful for my education and work experiences.
It is a positive that my husband works for the County Office of Education. He can consult and coordinate services for my daughter much easier.
It is a positive that I have a supportive circle of friends. They are my family in the US and I know i can depend on them for anything anytime.
it is a positive that through this experience I have met and bonded with other parents with special needs children. This made me feel that i was not alone and the feelings I am going through were all normal.
It is a positive that I feel that through this experience I can better relate to the parents of the children I am working with.
It is a positive that my son takes his big brother duty seriously. He adores her baby sister and helps take care of her the best way he can.
It is a positive that through this experience (and there will be more to come) the bond between me and my husband is stronger than ever.
it is a positive that this is beyond my control because I can completely let go and surrender it to God's will. I anticipate my realization of his purpose and the fulfillment of his good promise. I am thankful that my faith is in the process being strengthened and that I am being humbled.
It is a positive that I am finding all these positives... it looks like the change in my perspective is finally happening.
Mark Your Calendar
With the multiple anomalies present comes multiple doctors appointments to keep. We are booked for appointments from now until May. Although it is a bit tiring trying to juggle work, the demands of infant care, caring for a 5 year old, and running a household, the genetics doctors did assure me that as time passes there will be lesser and lesser medical appointments that we need to keep.
FEBRUARY
- Labwork to check for Creatinine levels.
- This February we met with the EENT doctor after being referred by the audiologist when she was not successful to do a full diagnostic hearing test in January. She has fluid in her ears.
- Appointment with the Pediatrician and her first set of immunizations.
MARCH
- Another appointment with the pediatrician.
-Renal doctor is keeping close watch of our daughter given that she has renal issues. frequent bloodwork to check for her creatinine levels needs to be done. A follow up appointment set this month.
- A consult with Opthalmology and immunology was sent out by the genetics doctors. in light of other health conditions associated with WHS, these consults were made so they can check for visual issues and immune system issues.
- We will be meeting with the Craniofacial team. The nurse said that it is long appointment with a team of people (Craniofacial doctor, pediatric surgeon, social worker, EENT, audiologist, etc). At this meeting we will be discussing the plan to repair her cleft palate.
APRIL
- 4th month baby check-up, next set of immunizations.
- The EENT doctor has schedules surgery to put tubes in her ears sometime the end of April. The audiologist will also be performing a sedated ABR at the same time.
MAY
- A follow up neurology appointment was set up in May.
We are still waiting for the cardiology consult, the GI doctor consult, and the schedule for an EEG to check for seizure activity.
The Stages of Grief
Here is the grief model called "The 7 Stages of Grief"
(I thought there were only 5)
1. SHOCK & DENIAL-
I felt numbed disbelief when they first told me and my husband that they found something in my baby's head. The tiny optimist in me kept convincing me that this was nothing because doctors can make a mistake and ultrasound is not really reliable. I prayed for a miracle. I felt that something like this cannot possibly happen to me. What are the odds right? Somewhere there my denial was accompanied with a sense of hope.
2. PAIN & GUILT-
As the shock wore off, I felt this unbelievably gripping pain in my chest. Crying was my only form of release but there seemed to be no real relief available. My head was noisy with incessant questions that have no answers. I didn't know who or what to blame.
3. ANGER & BARGAINING-
I was angry. I would walk around feeling angry. I was angry at God. However, though, in my bouts of anger I would still find myself talking to him and telling him that since he gave this to me he has got to help me through it. i was angry but i didn't really stop praying. Who else am I going to turn to?
4. "DEPRESSION", REFLECTION, LONELINESS-
People keep telling me things such as "I can do this.", "There is a reason", "God has a plan". but no amount of encouragement from others was really helpful. The magnitude of what I am faced with and the loss of my 'dream" child depresses me. I isolated myself on purpose, and didn't feel like meeting up with people. I would look at my daughter and feel pity. I would look at her and see the physical manifestations of the syndrome. I would see the broad forehead , the small chin, the protruding and wide-spaced eyes, the low set ears. I would look at her and not see her... I would see the syndrome. There is this sense of emptiness, a sense of despair. I felt like there was no more hope... no more joy.... I felt that denial seemed like a much better stage to be in. At least when I was in denial, I had some hope.
5. THE UPWARD TURN-
Eventually as I get the hang of my new routine and I have adjusted better to the demands of taking care of an infant, I would at times catch myself forgetting that i was caring for a special needs child. Eventually I caught myself while in my wallowing, that wallowing was exhausting. I would tell myself that I have got to move on. Eventually I found myself looking at my daughter and actually see her and how beautiful she was. Eventually I would catch myself forgetting that I have a child with special needs.
Don;t get me wrong, I am not quite THERE yet... I still have my moments, but I have slowly come to realize that the next day is always better than the last one.
6. RECONSTRUCTION & WORKING THROUGH-
I am not at this stage quite just yet... but from what i've read this is the point wherein one's mind starts working again and realistic solutions are sought as the process of reconstruction begins.
7. ACCEPTANCE & HOPE-
Not here quite yet either.. but they say that during this stage one has already accepted and has learned how to deal with the reality of the situation. A misconception is that acceptance means instant happiness... it is not. One might not be able to go back to the old and carefree state but one has already found a way forward. I guess in my case, this would be the time that I have found a way of redefining what is 'normal'.
--------------
People do not go through these stages in the progression at it is listed above. Some people jump between stages, as in my case, wherein I would find myself being angry, depressed, and bargaining in varied times during the day (and night). But these stages are real stages that grieving people do experience. And as much as I would love to just be able to jump through to the next stage and fast forward through time, I need to be able to feel and go through these stages to get to acceptance. To once again feel the promise of Hope.
(I thought there were only 5)
1. SHOCK & DENIAL-
I felt numbed disbelief when they first told me and my husband that they found something in my baby's head. The tiny optimist in me kept convincing me that this was nothing because doctors can make a mistake and ultrasound is not really reliable. I prayed for a miracle. I felt that something like this cannot possibly happen to me. What are the odds right? Somewhere there my denial was accompanied with a sense of hope.
2. PAIN & GUILT-
As the shock wore off, I felt this unbelievably gripping pain in my chest. Crying was my only form of release but there seemed to be no real relief available. My head was noisy with incessant questions that have no answers. I didn't know who or what to blame.
3. ANGER & BARGAINING-
I was angry. I would walk around feeling angry. I was angry at God. However, though, in my bouts of anger I would still find myself talking to him and telling him that since he gave this to me he has got to help me through it. i was angry but i didn't really stop praying. Who else am I going to turn to?
4. "DEPRESSION", REFLECTION, LONELINESS-
People keep telling me things such as "I can do this.", "There is a reason", "God has a plan". but no amount of encouragement from others was really helpful. The magnitude of what I am faced with and the loss of my 'dream" child depresses me. I isolated myself on purpose, and didn't feel like meeting up with people. I would look at my daughter and feel pity. I would look at her and see the physical manifestations of the syndrome. I would see the broad forehead , the small chin, the protruding and wide-spaced eyes, the low set ears. I would look at her and not see her... I would see the syndrome. There is this sense of emptiness, a sense of despair. I felt like there was no more hope... no more joy.... I felt that denial seemed like a much better stage to be in. At least when I was in denial, I had some hope.
5. THE UPWARD TURN-
Eventually as I get the hang of my new routine and I have adjusted better to the demands of taking care of an infant, I would at times catch myself forgetting that i was caring for a special needs child. Eventually I caught myself while in my wallowing, that wallowing was exhausting. I would tell myself that I have got to move on. Eventually I found myself looking at my daughter and actually see her and how beautiful she was. Eventually I would catch myself forgetting that I have a child with special needs.
Don;t get me wrong, I am not quite THERE yet... I still have my moments, but I have slowly come to realize that the next day is always better than the last one.
6. RECONSTRUCTION & WORKING THROUGH-
I am not at this stage quite just yet... but from what i've read this is the point wherein one's mind starts working again and realistic solutions are sought as the process of reconstruction begins.
7. ACCEPTANCE & HOPE-
Not here quite yet either.. but they say that during this stage one has already accepted and has learned how to deal with the reality of the situation. A misconception is that acceptance means instant happiness... it is not. One might not be able to go back to the old and carefree state but one has already found a way forward. I guess in my case, this would be the time that I have found a way of redefining what is 'normal'.
--------------
People do not go through these stages in the progression at it is listed above. Some people jump between stages, as in my case, wherein I would find myself being angry, depressed, and bargaining in varied times during the day (and night). But these stages are real stages that grieving people do experience. And as much as I would love to just be able to jump through to the next stage and fast forward through time, I need to be able to feel and go through these stages to get to acceptance. To once again feel the promise of Hope.
Im Tired
I'm tired of the seemingly endless appointments that we have with doctors.
I'm tired of worrying... I cannot worry about how it is going to be days, month or years from today. My daughter is still pretty small for us to determine how it is going to be.
I'm tired of feeling frustrated because I still do not have the answers.
I'm tired of crying my eyes out. My face hurts already.
I'm tired of always carrying this gripping anxiety in my chest.
I'm tired of having all these noises in my head. The questions just keep on going round and round... what's the point when there are no answers?
I'm tired of being tired.
I tired of trying to change the situation... I have no control.
I guess the only recourse I have left is to change ME.
I'm tired of worrying... I cannot worry about how it is going to be days, month or years from today. My daughter is still pretty small for us to determine how it is going to be.
I'm tired of feeling frustrated because I still do not have the answers.
I'm tired of crying my eyes out. My face hurts already.
I'm tired of always carrying this gripping anxiety in my chest.
I'm tired of having all these noises in my head. The questions just keep on going round and round... what's the point when there are no answers?
I'm tired of being tired.
I tired of trying to change the situation... I have no control.
I guess the only recourse I have left is to change ME.
Ignoring It Won't Make It Go Away
When in a threatening or dangerous situation people either resort to "fight" or "flight". I know myself well enough that I flee an uncomfortable situation.
But how do I flee this situation?
I've thought about it... running away.
I've thought about it... giving her up for adoption.
I've thought about it... leaving her in front of a hospital or a firestation.
I've thought about it.. mailing her to the Jolie- Pitts
I've thought about it.. bringing her back to the hospital, tell them this was not what i ordered, tell them i was an unsatisfied customer, give them the receipt and ask for my money back.
I've thought about it... killing myself.
But this does not really solve the problem does it? Ignoring the existence of the syndrome does not really cure it. And besides a syndrome is not a form of disease or sickness. it is not something that can be resolved by a pill. There is no cure. A syndrome is a condition.
I guess as a form of isolating myself and escaping I kept myself busy. I would find myself constantly cleaning or cooking. I would find myself getting my hands busy with scrapbooking. I would find myself making frequent trips to the salon. But, what happens when there is nothing left to cook or clean? What happens when I finished all my scrapbooks? What happens when there is no more cuticle left to push and take out because I have had one too many manicures and pedicures?
My problems will still be here won't they? Ignoring the problem, especially this one, will not make it go away.
But how do I flee this situation?
I've thought about it... running away.
I've thought about it... giving her up for adoption.
I've thought about it... leaving her in front of a hospital or a firestation.
I've thought about it.. mailing her to the Jolie- Pitts
I've thought about it.. bringing her back to the hospital, tell them this was not what i ordered, tell them i was an unsatisfied customer, give them the receipt and ask for my money back.
I've thought about it... killing myself.
But this does not really solve the problem does it? Ignoring the existence of the syndrome does not really cure it. And besides a syndrome is not a form of disease or sickness. it is not something that can be resolved by a pill. There is no cure. A syndrome is a condition.
I guess as a form of isolating myself and escaping I kept myself busy. I would find myself constantly cleaning or cooking. I would find myself getting my hands busy with scrapbooking. I would find myself making frequent trips to the salon. But, what happens when there is nothing left to cook or clean? What happens when I finished all my scrapbooks? What happens when there is no more cuticle left to push and take out because I have had one too many manicures and pedicures?
My problems will still be here won't they? Ignoring the problem, especially this one, will not make it go away.
Im angry at God.
I prayed incessantly for a miracle and he didn't give it to me.
Im angry at God because he didn't listen to my pleas.
I'm angry at God because i do not understand.
Im angry at God because this was his chance to show me what he was capable of, but he didn't.
The name Isabella means "god's promise"... what promise?
I stopped praying today.
I'm angry at God.
I prayed incessantly for a miracle and he didn't give it to me.
Im angry at God because he didn't listen to my pleas.
I'm angry at God because i do not understand.
Im angry at God because this was his chance to show me what he was capable of, but he didn't.
The name Isabella means "god's promise"... what promise?
I stopped praying today.
I'm angry at God.
Faced with my Biggest Fear
My biggest fear is to have a child with special needs.
I made sure that if I was to have any children, I was going to be pregnant before I reach the age of 35 because the risk gets higher after that age. I made sure that I would have a healthy pregnancy, drink my prenatal vitamins religiously, and keep my OB appointments. I took the screenings and tests to make sure. BUT of all syndromes that my child can possibly have, it had to be the one that cannot be detected by the AFP and the Nuchal Translucency.
I prayed everyday for God to not give me a special child and at the same time I trusted and believed that he wouldn't... after all what are the odds right? Right.
1:50,000 births. That was the odds. I was the lucky 1 in 50,000 births.
The picture in my head is a child that will not forever speak, will never walk, will never get to call me mom. A child who will never be capable of anything. As a mom this pains me.... i cannot just kiss this disability away.
My biggest fear is to have a child with special needs.... my biggest fear is here and she's sleeping in my crib.
I made sure that if I was to have any children, I was going to be pregnant before I reach the age of 35 because the risk gets higher after that age. I made sure that I would have a healthy pregnancy, drink my prenatal vitamins religiously, and keep my OB appointments. I took the screenings and tests to make sure. BUT of all syndromes that my child can possibly have, it had to be the one that cannot be detected by the AFP and the Nuchal Translucency.
I prayed everyday for God to not give me a special child and at the same time I trusted and believed that he wouldn't... after all what are the odds right? Right.
1:50,000 births. That was the odds. I was the lucky 1 in 50,000 births.
The picture in my head is a child that will not forever speak, will never walk, will never get to call me mom. A child who will never be capable of anything. As a mom this pains me.... i cannot just kiss this disability away.
My biggest fear is to have a child with special needs.... my biggest fear is here and she's sleeping in my crib.
Why and How
WHY?
This is a question that seems to not be leaving my mind.
I do not understand Why it had to be me, Why it had to be my daughter, Why I need to be tested like this?
People are telling me that she was given to me because I am the perfect parent for her. Although in the spiritual angle it makes sense, my heart is not content with this answer.
HOW?
This is another question that is lingering in my head. How did come to be this way? How am I going to do this? How did this happen? My own mother even asked me if i did something to have caused this.... I find it a very insensitive question. Doesn't she think that I've asked myself the same question a million times and retracing the steps of my pregnancy I cannot recall anything that I did, that I didn't do, that I over did, or that I didn't do enough of. I have no one and nothing to blame and this just makes it harder because I am carrying around this guilt and anger all by myself and I cannot throw it at anyone.
Guilt and Anger are not easy emotions to carry around.
People tell me that I can do this.
"You can do this Donna. You can do this."
I feel that I cant.
Why will I have to do this?
Why should I be the one to have to do this?
What if I don't want to be the one to have to do this?
I was not given a choice.
There are no satisfactory answers... there are no words that seem to encourage me.
My fate is unfathomable.
This is a question that seems to not be leaving my mind.
I do not understand Why it had to be me, Why it had to be my daughter, Why I need to be tested like this?
People are telling me that she was given to me because I am the perfect parent for her. Although in the spiritual angle it makes sense, my heart is not content with this answer.
HOW?
This is another question that is lingering in my head. How did come to be this way? How am I going to do this? How did this happen? My own mother even asked me if i did something to have caused this.... I find it a very insensitive question. Doesn't she think that I've asked myself the same question a million times and retracing the steps of my pregnancy I cannot recall anything that I did, that I didn't do, that I over did, or that I didn't do enough of. I have no one and nothing to blame and this just makes it harder because I am carrying around this guilt and anger all by myself and I cannot throw it at anyone.
Guilt and Anger are not easy emotions to carry around.
People tell me that I can do this.
"You can do this Donna. You can do this."
I feel that I cant.
Why will I have to do this?
Why should I be the one to have to do this?
What if I don't want to be the one to have to do this?
I was not given a choice.
There are no satisfactory answers... there are no words that seem to encourage me.
My fate is unfathomable.
A Loss...
When I'm faced with a problem I usually tell myself that I will be stronger after this... but in this case I guess it does not necessarily apply because this time, there is no "after this". This situation will be a constant.
When I conceived Isabella I weaved dreams for her. I pictured us dancing and singing together. I pictured us wearing matching outfits. I will make sure that i will be there to support her and encourage her to achieve her dreams. We will go to hula dance classes together and we will be singing our lungs out. We were going to be like best friends. Now all of my dreams are gone. How do I go about parenting my dream child when the one that was given to me has all these congenital anomalies and will have severe mental retardation and global developmental delays?
I feel a loss... almost like somebody died. I guess in a way someone did... my "perfect" child died and I am grieving for my loss.
When I conceived Isabella I weaved dreams for her. I pictured us dancing and singing together. I pictured us wearing matching outfits. I will make sure that i will be there to support her and encourage her to achieve her dreams. We will go to hula dance classes together and we will be singing our lungs out. We were going to be like best friends. Now all of my dreams are gone. How do I go about parenting my dream child when the one that was given to me has all these congenital anomalies and will have severe mental retardation and global developmental delays?
I feel a loss... almost like somebody died. I guess in a way someone did... my "perfect" child died and I am grieving for my loss.
Reading.... Researching
I went on a reading frenzy days after I found out that my daughter has Wolf Hirschorn Syndrome.
The syndrome does tie in altogether the multiple congenital anomalies that my daughter has. The agenesis of the corpus callosum, the cleft palate, the impaired renal function, the suspected heart murmur, and the possible hearing loss. Reading about it also gave me an idea on what the long term outlook is going to be like (but it didn't really make me feel better).
From the many websites that I visited I found out that she will always be physically smaller compared to other children her age. She can already be ten years old but be the size of a 5 year old. Speech and language delays are to be expected (which of course is made all the more challenging for my daughter who has a cleft palate and suspected hearing loss). Some children do not speak at all and communicate mainly via gestures and sounds, although there were reported cases of WHS children being able to utter one to two words. Mental retardation is also to be expected (which of course is compounded by the presence of cysts in her brain and the underdevelopment of the corpus callosum) and in most cases children with WHS fall under the moderate to severe range although there are reports that some children with WHS exhibit mild retardation. It is also to be expected that motor milestones will be delayed as motor issues are also comorbid with the syndrome. Feeding problems are common (again the issue with her cleft) and health problems can co-occur with the syndrome such as renal problems, heart problems (check on those two), immune problems (we already have an immunology doctor's consult), vision problems ( already have an opthalmologist doctor's consult), orthopedic problems. Seizures are also a possibility (we are still trying to schedule an EEG appointment).
In less words.... global developmental delays are expected.
Although I have understanding of what all the above jargon means.... the magnitude of the depth of what it means was just too overwhelming. After all, I am not taking this in from the perspective of a special educator... this time I was on the other side of the table... I am THE parent and reading about this is disheartening.
I kept on reading and reading... and I found out that the more I read, the more depressed I became. I had to stop reading.... there will be nothing new for me to read about that I have not already read. I will not happen upon a website that will have all the answers that will solve all the forthcoming issues and problems. There will be no wesbite that will link me to the miracle that I was praying for.
This is it... I was at the end of my rope.
The syndrome does tie in altogether the multiple congenital anomalies that my daughter has. The agenesis of the corpus callosum, the cleft palate, the impaired renal function, the suspected heart murmur, and the possible hearing loss. Reading about it also gave me an idea on what the long term outlook is going to be like (but it didn't really make me feel better).
From the many websites that I visited I found out that she will always be physically smaller compared to other children her age. She can already be ten years old but be the size of a 5 year old. Speech and language delays are to be expected (which of course is made all the more challenging for my daughter who has a cleft palate and suspected hearing loss). Some children do not speak at all and communicate mainly via gestures and sounds, although there were reported cases of WHS children being able to utter one to two words. Mental retardation is also to be expected (which of course is compounded by the presence of cysts in her brain and the underdevelopment of the corpus callosum) and in most cases children with WHS fall under the moderate to severe range although there are reports that some children with WHS exhibit mild retardation. It is also to be expected that motor milestones will be delayed as motor issues are also comorbid with the syndrome. Feeding problems are common (again the issue with her cleft) and health problems can co-occur with the syndrome such as renal problems, heart problems (check on those two), immune problems (we already have an immunology doctor's consult), vision problems ( already have an opthalmologist doctor's consult), orthopedic problems. Seizures are also a possibility (we are still trying to schedule an EEG appointment).
In less words.... global developmental delays are expected.
Although I have understanding of what all the above jargon means.... the magnitude of the depth of what it means was just too overwhelming. After all, I am not taking this in from the perspective of a special educator... this time I was on the other side of the table... I am THE parent and reading about this is disheartening.
I kept on reading and reading... and I found out that the more I read, the more depressed I became. I had to stop reading.... there will be nothing new for me to read about that I have not already read. I will not happen upon a website that will have all the answers that will solve all the forthcoming issues and problems. There will be no wesbite that will link me to the miracle that I was praying for.
This is it... I was at the end of my rope.
Birthday Surprise
In the morning of my birthday about 36 hours since we brought you home, we had our first pediatrician appointment.
At that appointment my daughter was measured and weighed 4 lbs 4 oz and measured 16.5 inches. We discussed about the baby's health history and we gave the doctor the litany of things that my daughter has.
2 cysts in the brain, fluid in the brain, underdeveloped corpus callosum, gall bladder cyst, underdeveloped kidneys, cleft palate, and suspected hearing loss. He jotted it all down in his computer.
We discussed feeding frequency and volume and a few minutes later we were done and was told to schedule a follow up appointment in 2 days. He also added that since my daughter has a lot of issues we should be expecting that we need to be meeting with him, the pediatrician, more frequently than the average baby.
After the appointment my husband went to the pharmacy to get some meds. I took the baby out of the carseat and held her. I spoke to her and told her that we were going to prove the world wrong. That she has enough brain structure in her head to compensate and that she has enough kidney to function. I was crying but I felt very hopeful.
Around 330pm of that day the phone rang and it was the genetics department at LPCH. Again, I had the priviledge of being personally called by the doctor (which means bad news). He said that the chromosome tests were in. I asked if they found something, and he said yes. I asked about what they found and he said that they found that my daughter has Wolf Hirschorn Syndrome (WHS). I have never heard of that syndrome.... and now that there was a diagnosis that ties all of what my daughter has altogether, I was not sure if i should feel relieved that we have a label for her.
I didn't finish that phone conversation with the doctor... I passed the phone onto my husband because I just broke in tears and started to sob uncontrollably.
When I was able to manage to recollect myself I decided to go on the internet to read on the syndrome. If I was going to battle through this I need to arm myself with information. But gaining knowledge about her syndrome didn't really make me powerful... reading about WHS made my heart feel like it was being shredded in pieces.
Wolf-Hirschhorn syndrome, also known as deletion 4p and 4p- syndrome, is caused by a partial deletion of the short arm of chromosome 4. About 87% of cases represent a de novo deletion, while about 13% are inherited from a parent with a chromosome translocation.
The most common abnormalities seen include severe to profound mental retardation, microcephaly (small head), seizures, poor muscle tone, and cleft lip and/or cleft palate. Characteristic facial features, include strabismus, hypertelorism, down-turned "fishlike" mouth, short upper lip and philtrum, small chin, ear tags or pits, and cranial asymmetry. Occasional abnormalities include heart defects, hypospadias, scoliosis, ptosis, fused teeth, hearing loss, delayed bone age, low hairline with webbed neck, and renal anomalies.
-------------
Whatever happened to the tests and screenings I took during pregnancy to make sure that I was not going to have a special baby? Why of all syndromes did I have to get one that is so rare that I have not nor anyone in the special ed community that I know, have heard of? Why was I the lucky 1:50,000 given that neither me nor my husband are carriers? Why the stupid genetic mutation? Why does it have to be a syndrome with characteristic facial features? Why, on top of everything that my daughter already has, does she have to look "special"? Why?
I then looked at images of children with WHS... and at that very moment, all the hope that I had in me just that very morning died.
I was devastated.
Some birthday surprise huh?
At that appointment my daughter was measured and weighed 4 lbs 4 oz and measured 16.5 inches. We discussed about the baby's health history and we gave the doctor the litany of things that my daughter has.
2 cysts in the brain, fluid in the brain, underdeveloped corpus callosum, gall bladder cyst, underdeveloped kidneys, cleft palate, and suspected hearing loss. He jotted it all down in his computer.
We discussed feeding frequency and volume and a few minutes later we were done and was told to schedule a follow up appointment in 2 days. He also added that since my daughter has a lot of issues we should be expecting that we need to be meeting with him, the pediatrician, more frequently than the average baby.
After the appointment my husband went to the pharmacy to get some meds. I took the baby out of the carseat and held her. I spoke to her and told her that we were going to prove the world wrong. That she has enough brain structure in her head to compensate and that she has enough kidney to function. I was crying but I felt very hopeful.
Around 330pm of that day the phone rang and it was the genetics department at LPCH. Again, I had the priviledge of being personally called by the doctor (which means bad news). He said that the chromosome tests were in. I asked if they found something, and he said yes. I asked about what they found and he said that they found that my daughter has Wolf Hirschorn Syndrome (WHS). I have never heard of that syndrome.... and now that there was a diagnosis that ties all of what my daughter has altogether, I was not sure if i should feel relieved that we have a label for her.
I didn't finish that phone conversation with the doctor... I passed the phone onto my husband because I just broke in tears and started to sob uncontrollably.
When I was able to manage to recollect myself I decided to go on the internet to read on the syndrome. If I was going to battle through this I need to arm myself with information. But gaining knowledge about her syndrome didn't really make me powerful... reading about WHS made my heart feel like it was being shredded in pieces.
Wolf-Hirschhorn syndrome, also known as deletion 4p and 4p- syndrome, is caused by a partial deletion of the short arm of chromosome 4. About 87% of cases represent a de novo deletion, while about 13% are inherited from a parent with a chromosome translocation.
The most common abnormalities seen include severe to profound mental retardation, microcephaly (small head), seizures, poor muscle tone, and cleft lip and/or cleft palate. Characteristic facial features, include strabismus, hypertelorism, down-turned "fishlike" mouth, short upper lip and philtrum, small chin, ear tags or pits, and cranial asymmetry. Occasional abnormalities include heart defects, hypospadias, scoliosis, ptosis, fused teeth, hearing loss, delayed bone age, low hairline with webbed neck, and renal anomalies.
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Whatever happened to the tests and screenings I took during pregnancy to make sure that I was not going to have a special baby? Why of all syndromes did I have to get one that is so rare that I have not nor anyone in the special ed community that I know, have heard of? Why was I the lucky 1:50,000 given that neither me nor my husband are carriers? Why the stupid genetic mutation? Why does it have to be a syndrome with characteristic facial features? Why, on top of everything that my daughter already has, does she have to look "special"? Why?
I then looked at images of children with WHS... and at that very moment, all the hope that I had in me just that very morning died.
I was devastated.
Some birthday surprise huh?
The Day After Christmas
We met with the doctor and the social worker and the NICU nurse at bedside they said that they had news. They said that we get to bring the baby home the day after Christmas.
We were excited but at the same time we weren't sure if we were ready. We want her to come home but we don't know if we were equipped to handle this.
My daughter was 4lbs when we brought her home. There was still no diagnosis other than her having "multiple congenital anomalies", and she still has not gained her birth weight back but with the help of vitamins and the iron and the sodium bicarbonate medicine (for her renal issues), Im sure it will only be a matter time. Days before the NICU discharge the NICU nurse and the OT already trained us on feeding her. We were taught how to put in a Nasograstic tube (NG Tube), how to feed her with the NG tube, how to hold the baby and feed her with the special feeding bottle for babies with a cleft palate. We were sent home with cans of her special formula, bottles of her medicine, extra NG tubes, syringes, and adhesive strips. The NICU team did try to prepare us for this big day but inspite of the preparations, I was still feeling very uncertain. Afterall, I was not going to bring home a regular normal baby... I was going to bring home a baby that needs special care. The moment we left the hospital we will be by ourselves and we will not have the support and help of the NICU staff. They did not give us a "manual" for this... I would have read it.
There was also a feeling of fear because the moment I bring her home, it will all become more real.
Bringing her home was not the only surprise we had that day... when the audiologist did the newborn hearing test, my daughter did not pass for both ears. (What diffrence would another rock being thrown at me make? Bad news does not really surprise me anymore.)
We were excited but at the same time we weren't sure if we were ready. We want her to come home but we don't know if we were equipped to handle this.
My daughter was 4lbs when we brought her home. There was still no diagnosis other than her having "multiple congenital anomalies", and she still has not gained her birth weight back but with the help of vitamins and the iron and the sodium bicarbonate medicine (for her renal issues), Im sure it will only be a matter time. Days before the NICU discharge the NICU nurse and the OT already trained us on feeding her. We were taught how to put in a Nasograstic tube (NG Tube), how to feed her with the NG tube, how to hold the baby and feed her with the special feeding bottle for babies with a cleft palate. We were sent home with cans of her special formula, bottles of her medicine, extra NG tubes, syringes, and adhesive strips. The NICU team did try to prepare us for this big day but inspite of the preparations, I was still feeling very uncertain. Afterall, I was not going to bring home a regular normal baby... I was going to bring home a baby that needs special care. The moment we left the hospital we will be by ourselves and we will not have the support and help of the NICU staff. They did not give us a "manual" for this... I would have read it.
There was also a feeling of fear because the moment I bring her home, it will all become more real.
Bringing her home was not the only surprise we had that day... when the audiologist did the newborn hearing test, my daughter did not pass for both ears. (What diffrence would another rock being thrown at me make? Bad news does not really surprise me anymore.)
The Hazy Holidays
All that driving back and forth and being governed by the clock to keep up with bedside meetings with doctors and specialists and feedings and tests made the days go by without us knowing. I hardly knew what day it was. It was almost Christmas but the usual celebratory spirit in me was not present. We lost track of time.
My husband and I then talked about it and decided that we should be home Christmas Eve and Christmas day, after all we do have another child at home and he deserves to have a Christmas even if we don't feel very "Christmas-y". I felt guilty leaving the hospital to "celebrate", when my daughter was still strapped onto gadgets and gizmos. My husband assured me that my daughter has a team of nurses to take care of her and that she will be fine. I remember asking the NICU nurse if it was okay for us to leave her for a couple of days and she assured me that it was fine and I choked on my tears as we were saying goodbye.
We do need to give our other child our time. He needs us too.
So we went home, I cooked, we had a meal, we baked cookies for Santa, we had a small party and we exchanged presents.
Although this Christmas didn't really feel much like the holidays, next Christmas was just a year away and we are going to celebrate it as a family of four.
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Here is a picture of my son...
My husband and I then talked about it and decided that we should be home Christmas Eve and Christmas day, after all we do have another child at home and he deserves to have a Christmas even if we don't feel very "Christmas-y". I felt guilty leaving the hospital to "celebrate", when my daughter was still strapped onto gadgets and gizmos. My husband assured me that my daughter has a team of nurses to take care of her and that she will be fine. I remember asking the NICU nurse if it was okay for us to leave her for a couple of days and she assured me that it was fine and I choked on my tears as we were saying goodbye.
We do need to give our other child our time. He needs us too.
So we went home, I cooked, we had a meal, we baked cookies for Santa, we had a small party and we exchanged presents.
Although this Christmas didn't really feel much like the holidays, next Christmas was just a year away and we are going to celebrate it as a family of four.
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Here is a picture of my son...
The NICU
Isabella was taken to the NICU immediately after birth. We were already discharged from the hospital but she still had to stay there. The NICU journey was not easy. Its a roller coaster ride of emotions.
I felt sad seeing that she does not have baby clothes to wear that actually fit her.
I worried because the doctors said the words "failure to thrive" to describe her. I was worried that when she lost weight on her first week of life (from 4 lbs 3 oz she went down to 3 lbs 5 oz) she won't be able to gain it all back. When you already have a small baby to begin with, any weight loss is huge.. I was scared that there would be nothing left.
I felt pain for the bruises on her heel for the many blood tests that they had to do on her.
I felt so bad that she has to be fed through an NG tube. I also remember that that was the first time I felt angry because feeding through an NG tube was no way to feed a baby.... not my baby.
I felt weak in the knees when I saw that her eyes were pried open, with what looks like a speculum for the eyes, by the opthalmologists.
I felt my heart stop when I saw that she was "yellow" and she had an IV placed on her head.
I felt helpless when I couldn't carry her and make her stop crying because she had to stay under the phototherapy lights. So right by her bedside, I cried too.
I had a difficult nights being far away from her and far away from my son because I needed the comfort of being close to my children.
I felt a pang of guilt when I found out I couldn't nurse her from my breast because of her cleft palate.
It felt weird having to go home from a hospital after giving birth but to not have a baby.
I felt disappointed (yet again) when we found out several blood tests and a doctor's consult later that she had renal issues (renal hypolasia).
I felt displaced just trying to find a niche in the hospital and establishing a routine because we had to stay there the whole day.
I felt alone and that nobody understood me, not even my husband.
I felt frustrated because the doctors couldn't give me a discharge date and that they still cannot give me a prognosis and a clear picture of the future because she has no diagnosis.
I felt lost because I don't have a clear picture of what is going on and I'm clueless about what to do and the doctor's who are the supposed experts don't have answers because they do not know either.
I felt exhausted because we had to drive back and forth to the hospital.
I felt discouraged because I see no light at the end of this tunnel.
I felt extreme sorrow... and I was drowning in it.
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While we were at the LPCH-NICU, i got in touch with the Pictures of Hope Foundation. Thanks Cheryl!
The Pictures of Hope Foundation provides complimentary documentary style photographs for families of children staying in the NICU. Through the foundation I met Leandra from Goose and Bugs photography. She posted some pictures of our NICU stay on her blog site.
http://gooseandbugsphotography.com/blog/2009/12/palo-alto-pictures-of-hope-photographer-•-tiny-baby-girl/
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