This is for WHS Mommies too

Found this video, "Dear Future Mum",
made for World Down Syndrome Awareness Day  (March 21st) .

It's message  hold's true for us too, the parents of individuals with Wolf Hirschhorn Syndrome,
most especially to the new mommies and the mommies to be of children with 4p minus. 

I really hope this video finds you.  

It will give you HOPE!

I somehow cannot find a way to embed the video onto my blog, 

but the picture is linked to the video. 
All you need to do is click it. 

My Daily Prayer

I remember reading this prayer daily during the first two years since Isabella was diagnosed. This is what helped me take things a day at a time, because when things get too overwhelming, prayer was my comfort to help get me through the day.

In my daily praying, I have learned to let go and pass on some of the responsibility I felt to HIM. The burden is lightened in accepting that God is in charge and trusting that he is with you, and to take on all of it was intensely overwhelming and defeating. I have no control of what there is/was and there was comfort in knowing that I can “Cast your burden on the Lord . . . . (Isaiah 9:6).

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Lord God,

I am here today to praise and thank you for the challenges that you give me. I know that your plans for providing these trials goes beyond teaching me something… your plans include changing me into something, molding my character so that I may become a better version of myself yesterday.

Lord I praise and thank you for challenges that you have prepared for me daily. I trust that your plans are good, and that your will is always good. Lord I apologize for having finite understanding that sometimes I struggle in accepting things as they are. I apologize for missing out on the little blessings and miracles every day because I focus too much on what is not there. I am sorry that sometimes I overlook the good things and that I take things for granted. Remind me everyday Lord that there is always something to find that I can praise and thank you for. That there are things, no matter how small, that I can be grateful for. Teach me Lord to appreciate the things can sometimes be guised as challenges because good things are hiding behind these trials and that all that I need to do is to persevere and be patient.

Lord, I am also here today to lift up to you my fears, my apprehensions and my doubts… Lord I lift up to you all the concerns in my heart.

Lord I lift up to you my child. I wish for her to grow up happy and loving. Let her know and feel that she is loved because she is. Grant her health, and be with her in every seizure, surgery, doctor’s appointment, medical procedure, etc. Be with her in her daily tasks, most especially the ones that most people find simple to do, but takes a lot for  her to accomplish. Guide her and hold her in your hands. Give her an indomitable spirit so she will keep trying her best and push herself beyond her limits or the dictates of her disability. As for me Lord, help me to just love her more whenever I find that days are challenging. Shower me with more love for her because there are definite moments that I need to feel more of that.

Lord I lift up to you my son. Give him compassion so that he may be able to process his own understanding of what it is like to be a part of a family with a child with special needs. Guide him through his own journey into understanding and acceptance. Grant him patience and the words to help him communicate and educate his peers. I wish that he grows up knowing that he is loved too and that he is never neglected nor forgotten whenever the focus is on his sister. Grant him more love for his sister and from us and may he grow up as his sister’s advocate and protector.  

Lord I lift up to you my spouse. Make him understand my many complicated emotions. Help us connect and communicate that we may always find a middle ground or compromise for the tough decisions we have to make and for the resolution of conflicts that we will face. Grant us lord the gift of finding quality time for each other and be able to always reassure and comfort each other. Remind us Lord everyday of the love that we have for each other prior to having our children. That the love is still there though it may be hidden under a pile of chores, errands, and worries. Lord let us feel that love every now and then to give us a boost or a nudge when we most need it. Lord we pray that you help us keep our relationship strong because we will need each other for the many other trials ahead. Keep us together as we weather the storms.

Lord I lift up to you the people around me, that I can trust them to be understanding of my child, and that the people that work with her have genuine care for her. Grant the doctors, nurses, teachers, and the specialists that work with my child the knowledge and education that is necessary to help her reach her goals. I pray that they are as invested as we are in our child’s development. Grant them compassion for us too that sometimes daily life gets in the way and we may not be able to do all. Grant them patience, and resourcefulness and creativity and compassion as they work daily with my daughter. I pray for their health and bless them lord for helping us through this journey of raising my daughter.

Lord I also lift up to you myself. Grant me your grace so that I can keep on going. Help me to always find strength within. Take out the anger, the bitterness, the envy, the self pity, and the negativity in my heart. Take out the doubt and teach me to fully trust your will. Remind me everyday Lord that you will never give me something I cannot bear. Replace all these overwhelming emotions with feelings of joy and acceptance and contentment…. of feelings that evoke faith and hope. Nourish my spirit with wisdom and courage to help me to keep on going in the face of challenges. Grant me perseverance. Grant me peace of mind. Grant me a joyful heart.

Lord, for all the other things that I have forgotten to praise and thank you for, I say thank you. For all the things that I have no words to lift up to you, I offer to you. My heart is in your hands dear God. I offer it to you wholly. Hold it in the palm of your hand. Teach me God to be still in the midst of chaos and trust that that is exactly when your best work happens. Lord let me know that you are there all the time and that you will always, always carry me through because you are God.

All this I ask in your name.

Amen.

About A Brother and a Sister

Ever since Isabella was born, we have been raising our typical son (older sibling) conscientiously in terms of how he should treat her sister. We want him to treat her with compassion and yet not so much that Isabella can  get away with a lot of things. We want to be fair to each of them and yet not overcompensate for whatever for either one. It's a tough tightrope balancing act sometimes and you have no idea whether you are doing it right or whether you are doing it enough. It's a mystery.

Sometimes I wonder about whether my two children will ever find a way to really play together, like siblings do... sometimes I fear that he will outgrow his sister and be estranged as they get older, but like all fears and what if's, there are no guarantees, and most of the time really, they are all just noisy mind junk .

These were quick and passing thoughts I had this week, and then while I was in the process of cleaning up photos and videos from our I-Pad, I found this.

As it has been proven over and over again, it looks like I really have nothing to worry about. 

Is This A Sign?

Like I have mentioned in previous posts, we know Isabella understands more than what she can express. However, it becomes a guessing game because with very limited expressive language output, it is an extra challenge to gauge her receptive language skills.

Her language repertoire includes the following:

• She can nod for "yes", and can shake her head for "no" but she is inconsistent in using it, so we can't really tell for sure. She does like to say "no" a lot. 

• She does not point, but she will take your hand and lead you to where she wants to go or for you to do or get something she wants, e.g. takes your hand because the ipad picture slideshow of herself has stopped - she loves looking at pictures of herself.  

• She used to touch her forehead,  her generic sign for "parent", but she also uses the same gesture/sign for "Hi"depending on the context.  

• She makes happy, whiny, angry sounds. Most with a closed mouth, but occasionally we get an open "ahhh". She's happy when she sees herself in the mirror, when we do a lot of movement with our hands, when we swing her, when we sing, when we dance, when we press play on the ipad so she can watch pictures of herself, etc. She makes angry sounds when her dad gets dressed because she doesn't want him to leave, or when I'm washing the dishes and cannot give her my full attention, etc. 

• When I talk to her she responds with a sound which indicates that she knows how to do the "back and forth" in terms of communication   

                  Me: So what did you do in school today?

                  Isay: closed mouth "uh-uh"

                  Me: So you played with your friends?

                  Isay: closed mouth "uh-uh"

                  Me: Did you have fun?

                  Isay: closed mouth "uh-uh"

• She has shown us that she has some vocabulary. Like when we ask her to get her book, even if we were pointing at the ball just to test her, she will look at the ball, but turn for the book and get it. 

Since her expressive language is limited, we try to use  sign language.  Even to just model it for her, in the hope that eventually she will use her hands to talk to us. (I have to note that we are not signing because she is deaf or hard of hearing, we are modeling for her a way to use her hands for language so she can learn how to use it). When we do talk to her, we make sure that we say the word and do the sign, even if she does not do it with her hands. I have to admit though that we are not consistent in using it because it's always just easier to talk to her, and there was always the question about whether she makes a connection between the sign and the word, BUT that was a question unanswered until today.


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In this video, Isay had one foot with a shoe on and another one with a sock. First, I signed only "where" and "shoe". Then I signed "where" and "sock". There was a slight, what seems like a processing mistake, and then she corrected herself.

In this other video, I had Isabella's shoes beside her on the couch. I don't know if she even knew they were there, because she was busy trying to watch herself being video-ed. I asked by signing "where shoe" but I meant "give shoe". I was not correctly signing what I was asking for her to do. When I asked, you can see she did look down her foot and then she shook her head "no". I realized the miscommunication that happened there. She was trying to tell me "no shoe" when I asked "where shoe", and it is actually a correct response.

She is 3 years and 11 months on this post... that's how long we had to wait for a sign that she does know about things we have been trying to tell her, show her, teach her ... but it looks like the wait is not going to be that long anymore.

Building On The Dream

I always dreamed of becoming a mom. It was my ultimate dream. I wanted to have 2 children. First a boy and then a girl. Come to think of it, I did get what I wished for. First my son, then Isabella. I have to admit though that I was scared of having a girl. I felt that girls would take more to raise. I felt that girls being a bit more emotionally sensitive than boys, I can easily make mistakes that can scar them emotionally for life.


Now why would I even think this? You see, I did have a complicated childhood. My dad passed when I was young and we were raised by our mom. My mom, from my perspective was very critical, at times physically abusive, and many times verbally abusive. She was also rarely at home. I felt that, for the most part, I was really raised by the nanny and eventually by ourselves. I had many mommy baggages… trunkloads of mommy issues. This is why for a time after my son was born, I didn’t want any more children, and should I have another one, I wanted another boy. But, as luck would have it, around August of 2009, the ultrasound tech surprised me with the news that I was pregnant with a girl. And I was terrified with the impending future that a girl would be an emotional roller coaster ride. I was already scared of the what ifs and the prospective emotional damage that I would be accused of inflicting that my daughter would angrily hurl at me when she comes of age. I was already thinking of whatevers and scenarios to always be conscientious of what I went through so as not to inflict the same scars that I used to bear. But I know that I can’t be the perfect parent, but I can certainly try. And so, I made a promise to myself to be the best mommy in the world, and when I was pregnant with Isay, I prayed to God every night to help me through raising a daughter of my own.

Then came the diagnosis and the shattering of dreams… and of course that mommy guilt magnified ten times over.






It was later on that I realized that since I prayed to become the best mommy in the world it was exactly what was presented to me… The opportunity to become the best mommy in the world… or to at least keep trying to be. Not in the way that I conjured it to be, rather to be that mommy that will support her daughter every step of the way… that mommy that will not leave no matter the circumstance. That mommy that will always have the best interest of her daughter at heart and would fight to get what she deserves. That mommy that will not take anything for granted, and will invest everything she has, her time and her energy and all that she has to give. That mommy that will always put her child’s needs first before her own. That mommy who will always be encouraging and will always believe. That mommy that will always be proud of her children.




Now, for many nights I find myself praying, by god's grace, to be able to handle this... that I was cut out for this huge of a task and immensity of ambition.




The dream is still there, and the chance to make it a reality is still here. Not in the way I pictured it to be, but it most certainly is still a good life to build on that dream.

And all things, whatsoever ye shall ask in prayer, believing, ye shall receive.

Matthew 21:22

The Crosses We Bear

A couple of years ago, I have this “convenient” relationship with god. I go to church when I feel like it and I pray when I find the time.

I do thank him for the luck and the blessings and the good tidings, but I really did not see him as the one who orchestrates the events in life. He is not the author of my life. I was the author of my own fate.… I used to believe that everything that I have reaped is because of what I have sown myself. God was merely a go to entity for times of crisis… major crises, when all hope is lost. He was an icon of hope… a symbol no different from Santa Claus, the Statue of Liberty, or a four leaf clover.


For many years, things came easy and we’ve been blessed by many things, but my spouse and I both felt that something was seemingly lacking… we both know that we need to nurture the spiritual aspect of our life, but we still kept choosing to be busy with other things. We kept putting off the nurturing of our spirit under a pile of things to do… and despite the knowledge of this need, we didn’t really think it was pressing enough to pay attention to right away. Our “spirit” was no different than another thing on our to do list that we needed to get done. “God”, was on our to do list, more specifically at the end of our to do list. We are guilty of putting god as our last priority that we will get to when we find the time…. Until a year ago, we eventually did.


A year ago my husband and I decided to participate in the Christian Life Program (CLP). We figured, ok its time. We told ourselves that since we do not have a major crisis in our life, “God”, however we may interpret him to be, will not be “judging” us because we only remembered him because we are in dire need. We figured that since we’ve been blessed we owed him at least that.


So we went to attend the CLP… “Friday” church as we called it. I was skeptic. I had all this mind noise and all these questions that challenge what was being said… I was preoccupied with what the speakers said that I found to be debatable. I would listen to the talks and take it in objectively, much like doing research or working on a course of study. Then, during one of the CLP sessions, while I was busy trying to block away all the mind noise, and asking myself “what am I doing here?” I found myself transfixed, on the picture of Jesus knocking on the door…. It was then that I realized that I was taking all the teaching the wrong way. I was looking at faith from the wrong perspective. Faith is not a matter of the “head”, it was a matter of the “heart”.


It was then that I felt a turning point whilst undergoing the CLP program. I have opened myself to the teachings. My son further motivated us to commit to finishing the program as he gets really excited about going to “Friday church”. We were able to attend the 3 modules, the 12 talks on Friday evenings after a hectic work week and me ALSO being PREGNANT at that time. But I didn’t mind… even though I was feeling extra tired from being pregnant, it became important to me…. For the first time, God was at the forefront of our daily life. Honestly, we found ourselves wondering why we didn’t let him in sooner. It was wonderful and we felt the immensity his love. There was nothing else that we needed. Everything was just going to be perfect from then onwards…. And so I thought….


Not long after we have completed the CLP… on November 13, a Friday, at my 36th week of pregnancy I received a phone call from my doctor. He said that the ultrasound we had a couple of days back revealed some concerns about our baby. He said that she has a hole in her heart. Eventhough we were worried, we know god is there…. and we prayed.


When we went for a more specialized ultrasound to have our baby’s heart checked, we were told by the perinatologist that there were concerns about my baby’s size, but most shockingly concerns also on the baby’s brain. They detected cysts. Again, eventhough we were more worried, we know god is there and we prayed.


We were then referred to Lucille Packard hospital in Stanford and met with a lot of specialists. And at an ultrasound we had there, they detected that my baby has multiple brain anomalies…. She has underdeveloped brain structures, brain cysts and some fluid. This was confirmed by fetal MRI scan, that then also added detection of a liver cyst, and concerns about the baby’s size. And eventhough a bigger worry was added on our list of worries, we still believe that god is there, and we prayed.


The doctors then told that a c section should be performed because of all these concerns. So on December 9, feeling not quite sure about how to feel about the anticipation of the birth of our baby, she was born. She weighed 4 lbs 3 oz. She had trouble breathing and was intubated, but not long after she managed to breathe on her own. She was also found to have a cleft palate. Again, we countered our worries in the belief that god is there and we continued to pray.


She stayed 17 days in the NICU and during her stay she was jaundiced and her weight went down to 3lbs 5 oz. Doctors kept poking her for many lab orders that were requested. She had an IV on her head. She had wires attached to her tiny body that were attached to these machines making all these beeping noises. It was a lot to take in… too much for a small baby…. Too much for a mother like me. They inspected every single thing that they could inspect. And eventually they detected that she has underdeveloped kidneys as well. Yet another thing that we needed to add to our already long list of complications… but we still prayed... in fact, we prayed harder.


We then were told that we can bring her home the day after Christmas. On the day that we were picking her up from the hospital a yellow card on her bedside read that she failed her hearing test. We brought home a deaf baby. By this time, worry was more than just a constant companion, by this time it developed into anxiety that seem to live and breathe a life of its own … but we held on to hope and trusted in the lord and we prayed like we never prayed before.


December 28, my birthday. I received a call from genetics doctors. They finally have a diagnosis that ties all these complications together. My daughter has wolf hirschorn syndrome. I cried… I was disheartened. When I googled the syndrome I was devastated. The prognosis is very grim…. Profound mental retardation… global developmental delay, seizures, Might not talk or walk….. I stopped praying.


I had many plans for her. I weaved many dreams of what she would grow up to be. In the many different beautiful scenarios that I have pictured in my head, none of that included feeding a child with a g tube, managing medication, pushing a child on a wheelchair, going to doctor’s clinics instead of hula classes, and working on speech skills and making sounds instead of having to sing songs with her. How will I be able to do things that I had planned for us when we do not even know when or if she is going to walk or talk. I was not equipped to do this. Despite my being a special education teacher, I was not ready to do this. I am not even willing to do it. I just can’t.


I did not understand why of all times in my life it had to be now. Why did it have to be me? Why my family? Why my daughter? Why when we finally brought ourselves to the Lord. I didn’t quite understand…. Why am I the lucky victim of this sick stroke of genius bad luck? Why didn’t he listen? I never ask for a lot of things, why was I not spared? God was unfair and I was angry and I was cursing at him. I hated him…. I really hated him. He was not there… was never there… God abandoned us.


In my grief… in those dark days and dark dark hours when I was asking god why? Why me? Why now? Why when I choose to come to you lord? A voice came to me and said, “I made you come to me cause I know you would need me”…. Upon hearing this voice, I experienced this lightness…. It was the answer that I was looking for. That was the day that I found myself praying again.


I said, Lord you gave me this, you have got to help me through this. You do not have a choice but to help me like I did not have a choice when you chose me for this task. You have got to help me. You just have to.


It took many tears, many sleep less nights, many crazy fits, extreme bitterness, intense self pity, many mind looping worries, fears, anger and anxieties before I eventually found myself in a place wherein I have surrendered all of this to the lord. It was not easy getting over the fear and the envy and the disappointment and the anger. It was not easy. It was very humbling but it was not easy, but I did it. I’m actually still doing it. I gave it all to HIM…. I offered Isabella’s fate/future into his hands. I realized that my children are not my children, they are the children of god. I am merely a steward. I was… we were… entrusted to care for Isabella. He trusted us, because he has that much confidence in us to give us this immense task, he believes that we can do this… and though I was very doubtful about the strength I had in me, I eventually found myself in a place of acceptance. Though there are days that I still shed a tear, when I still feel fear, frustration and doubt… I can easily muster the strength and courage to tell myself, that I can do this, with god’s help and god’s grace I can do this.

" My grace is sufficient for you, for my strength is made perfect in weakness"

Of all the crosses that I have had to bear in my life, this by far is the biggest… and yet, this is the lightest. I let god take over and I trust that he will fulfill his promise of carrying me through. Through him all things really are possible, all we’ve got to do is believe.

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.

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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

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

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