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. 

The Second Year

Person: So how’s your daughter?

Me: Oh she'll be turning 2 this Friday.

Person: Oh, is she running and climbing around the house and getting into things?

Me: pause...

Me Thinking: mental picture of a typical 2 year old versus my mental picture of Isabella

Pause again….

Response: No....

I have not really entertained Isabella’s chronological age for a long time. It just helps not thinking about where she is at and where she should be and to see that big difference in between. I have trained myself to focus on the things that she can do rather than obsessing on developmental checklists. I’d much rather get lost in the numbers, but on this particular moment, after this conversation, the numbers caught up on me… like a slap in the face.

I realized that my daughter is not really even a year old.

…

It’s been days since Isabella had her second birthday and I do owe this blog a post about that year that has passed. I’ve contemplated against writing something sad about her second year... but eventually I gave in... thus this blog post that I’ve procrastinated on writing.

Truth be told... it was painful for me to celebrate her second birthday.

I know, I know... there were significant developmental strides, and yes those were JOYS added to our list, but in between those strides are the long arduous wait times to see what she achieves next... and quite frankly, sometimes I feel that the wait takes its toll on me rubbing off the novelty of what she has achieved the latest.

Maybe its because they are too little to even describe or tell as a story.... mostly I think its me and my bitterness.

Yes, I still feel bitter from time to time, and with her second year, I felt it big time.

YES, she can sit and pull herself to stand, BUT all her younger counterparts are either walking, running, climbing, jumping, getting into things, making a mess around the house. While some who are even way younger already balancing while bearing weight on their legs.

YES, she's discovered toys and picks up things and shakes them like a rattle, BUT her way younger counterparts have moved past beyond the joys of rattling a toy and moved on to the musical light up ones. Even better, others have regular playmates and scheduled play-dates.

YES, she always has a ready smile for us. BUT I have yet to see a response that signifies a head shaking to tell No, or a nod, or a clap, a gesture to give something, a goodbye wave... or to just hear her call me "mama". Will she ever call me mama?

….

When she turned one, technically, her delays were not yet that far apart. I will often find myself looking out into the unknown future armed with hope... now at two and not even reaching the one year mark, what do I arm myself with as I look out into that big, and what seems really long, unknown future? Somewhere there my positive thinking was like a drug that gave me mood swings of denial.

But, I know that I cannot give up hope completely… because really, that’s all I really have. So, I just look out without those false glorified visions nor expectations.... Just a small stare out into the open with a soft pursed smile on my lips, because it hurts too much to hope too big.

I think there is this fine line between too much hoping and expecting and practically begging for something great to happen. Like I said, hoping too much was clouding my perception of reality.

....

We celebrated her day by going to the bowling alley, with the theme of "for all the developmental milestones she worked so hard on hitting one bowling pin at a time" kept in my mind... and yet I found myself silently grieving on her birthday while I bowled till my right arm hurt. It was frustrating to keep trying for a strike, or even just a spare instead of the frequent scattered pins or getting that dreaded gutter ball.

As apropos as bowling seemed as a way to celebrate her special day, I guess I need to get better at accepting that sometimes its not how the balls are thrown, not those carefully planned angles, nor the strength of your throw, nor the speed of release, nor the weight of the ball, nor the careful placement of the fingers, nor the strategic twist of the wrist, nor the graceful forward step and follow through.

Perhaps that’s just how the pins are supposed to stand, and I should get better at thinking and feeling that that's okay.

Because it will.

Because it is.

That, or, I’m just a really terrible bowler.

...

Now, I look at her, and I say “Kiss Nanay” and she readily leans forward for her cheek to touch my lips...  and she smiles at that moment of contact like that's the best thing ever... I just hope my heart catches up to that big silly grin on her beautiful face.

Flowing from Refusal to Acceptance

You know how when something does not work for you or you don’t like something you were told, taught and raised to say “No”  to it.

To refuse it.

Or to be an agent of change when the situation you are in isn’t ideal.

It is when you get older that you realize that there are things that you cannot change because it beyond your control… maybe even perhaps beyond changing… and so you just have to accept it. When you get older somebody or something (or your own realization perhaps) suggests it is YOU that need to be changed (your perspective) when you are challenged with things that seem unchangeable… or ARE unchangeable…

But nobody really tells you about the process that this entails….  Becoming the chang-er to being the change-ee is not an easy transition.

At first I think it would feel just like the struggle and battle with the pull of an undertow…. you somehow give up and let the tide just eat you, but then the mere act of the letting go is actually what saves you and you find yourself on the surface of the water… tired, wet, disheveled, but alive and breathing nonetheless.

This is why coming out of that sate of denial, anger, and grief is a tough journey… and you still often find yourself in places questioning where you are at.

While acceptance does not necessarily mean you’re happy…. That place where you realize that you’ve learned to go with the flow is a step into the right direction.

The Journey of A Lifetime

It’s going to be the road trip of a lifetime.


I made my list and have packed my bags and made my go, do and see plans for when we reach our destination.

However, I didn’t have a plan for when the travel does not start the way I want it to. In spite of the regular oil changes and upkeep, and diligent car maintenance checks it was almost inconceivable that the car will just not work the way that it should. The engine is not running the way it should, and its making these other noises rather than that low rhythmic hum, and when it reaches a certain speed the whole car starts to jerk and I have to slow down. Looks like were not going to get to our destination as soon as it was planned. I have no other choice but to take things slow.

It’s going to be one really long road trip.




It does not help that we hit the occasional pot holes… it adds on to the worry that the car will deteriorate further. But we try to be careful, even though sometimes it seems unavoidable to hit a bump on the road. But keep trying, we still do and we focus all our energy on getting to the planned destination.


And so we keep driving, slow as we may be.

Tension builds up when a car is tailing right behind us, seemingly nudging to make us go faster. And at first it was quite embarassing that we are driving way below the speed limit. And as more cars pass us by we became more anxious... Are we really that slow?

As we push on forward, there are times we find ourselves in envy of the other cars and SUVs that speed on by. There are also moments where we find ourselves cursing at the sports cars that cut ahead without even the courtesy of using their signal light. And other times, we find ourselves in moments of madness to catch up with at least the regular sedans that pass and sometimes even more so for the cars that have the same make us our own but still are already way ahead of us. Eventually, we understand that even if we step on the gas further down as we could, it could only speed up as much as the car wishes to. We have no control of how much we can actually accelerate.

We have our travel time table, and just like everybody who is travelling on a road, we want to get there on time. But with things not going the way it should, at least for the vehicle that we are driving, that travel time table will have to be tossed out the window. So much for thinking we could get there on time, or at least just a couple of hours late.

 


We drove on. Slow and steady wins the race as the saying goes.


But wait… what is this smoke coming out of the hood? There are no potholes? We kept our speed at the bare minimum. Uh, oh, looks like we are stopping. Stopping for good? Oh I sure hope not.

So we called the emergency road side assistance. They tried to see what was up with the car, and with that sad sorry look we were told that it can’t get us to where we plan to go... “It’s just not going to make it.” So is this it for us? But we have plans and we want to get there.




Well, we are already on this road, and do not want to be stuck here, and clearly we have to at least go somewhere. So how are we going to get there and where is this place?


We decided to rehash the old plans, and make a new one. The broken down car, we planned on not forcing it to go on and traded them in for bicycles. And the luggage? Well we have to do with just the essentials. Travel light and let go of the unnecessary stuff.

Oh, and we need a map! So let’s see, where do we go, without thinking too much about all the mile posts along the way, to get somewhere for however long it takes?




Starting the trip on the bike is the hardest part. You wonder about the road you’re traveling on and you worry if it would really take you to “a” destination… and you do this despite of checking your map over and over again. There’s also the feeling of exhaustion, and the occasional flat tire, or the fixing of a bent wheel, and the nursing of a wound from falling. But you have to just keep on moving forward if you want to get somewhere. Eventually the training wheels can come off, and you get your sense of balance and rhythm. You start enjoying the feel of the warm sun and the cool breeze, and the remarkable smell of the nature filled air…. Most importantly, you get a sense of freedom that you have not felt in a long time. Occasionally, you even impress yourself cruising steadily with your eyes closed, and from time to time, you surprise yourself even more that you can let go of the handle bars. There are also these intense moments that you catch yourself thinking that getting to the destination does not seem to matter anymore, for the journey is good enough in itself.

Being on a bike trail does not always guarantee a smooth ride. There will be times when you will need to give yourself a push and that extra effort to be able to ride up that steep slope. There are times that you will feel afraid and out of control as you go on a downhill trail. There are also times that you will be cruising steradily on a smooth path. Other times, you might need to walk it off, and still there are also other times that it might be necessary to just stop to be able to to take it all in, or let it all out, or to just simply recollect or reflect. But, it is important to never forget to keep on going. Because the more you try to ride the variety of paths set before you, the more you will start feeling less unsure about yourself and the better you get at maneuvering your way through. You also feel stronger each time you fall off and you get better and better at getting back on.



The good thing about traveling light on a bicycle is that you do not travel on the typical road. After all, there are rules against riding your bike on freeways, and not all freeways are bike friendly, although I think all roads should be bike friendly. Anyways, because we have our own road cut out ahead of us, there are untypical stops that we make along the way. The stops that a 4 wheeled vehicle cannot possibly go to, and this is not a bad thing, in fact if not for our car breaking down, we could have missed out. We’ve seen beautiful pastures with brightly colored wild flowers, thick green forests, rippling streams, majestic rock formations, astounding waterfalls, passionate sunsets, hopeful sunrises, and grand rainbows that can only be experienced being on the bike trails. There are also ravines and canyons that are breathtakingly spectacular.

Being on a bicycle, we get to breathe in life and realize how small we really are in the grandest scheme of things, but at the same time we don’t feel insignificant at all for we all have a purpose. This journey, on this bike, is my purpose.

We’ve met other bikers on the road as well. We trade bike travelling tips and some stories. Some stories exchanged are scary, some sad, some crazy, some funny, but all in the end coming out of it beautifully changed by the journey.

 
 
You see we plan on still getting there and we will get there, but where exactly is “there” is going to be a mystery, and I have a good feeling that it’s going to be a sweet surprise. Who needs a trip, when I was afforded a journey?



I have been driving down this wonderfully designed road for almost 2 years now, just us… and our bike.

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

My "Changed" Life

“Your life must have changed after having been given a child with special needs”.



Someone told me once… and yes, I may have to say so that my life has indeed changed. But doesn’t every baby, special or not change you in a way?


Sure we have more doctor’s appointments to keep, more specialists to meet, and more prescriptions to fill than the average family. We have a nurse instead of your standard baby sitter, and specialists come to our house instead of us taking our baby out for play groups.
We will be spending our money longer on diapers and formula and maybe even co pays…. But we get to save on baby clothes, because our daughter takes her time to grow… so that is savings that can go in the bank… Cha-Cha-Ching!


And, yeah, we don’t really need to stay up all night feeding our baby because a kangaroo pump does that for her, but we still have our share of sleepless nights and restless days,  because just like the “others” we do still deal with colic and constipation and teething.

We probably spend more time at the hospital than any typical family, but at that hospital, we see other parents like us who have put in their hospital time as long as we have and we feel no different from them. Actually, in a way, we feel a bit ahead from the typical parents because if we need to have our baby stay at the ICU, we have the most expensive baby care team in the world watching her while we go out and have dinner... Date Night!

Our typical-parents-with new-baby counterparts go look at calendars and dates and proudly talk about milestones and how old their babies are, while we try to stay away from developmental charts and just focus on our daughter as an individual and beam with pride to see the upward curve on the growth chart she made specifically for herself…. But that really does not make us any different. We beam and boast just as much as the typical parents do no matter how trivial and small they interpret our achievement to be.

“Oh my Isabella didn’t throw-up all her feeds today…. Good job baby girl!”


That feeling of pride we feel as parents is no different from theirs…. Though,I may be a bit modest there…. Because honestly, those “little trivial milestones” took a lot of hardwork, and really our pride is magnified 10x more than that of the ordinary parent. So in that respect, really we are better of… but really, its not something to brag about… even if it is... so I won't.... I mean, I will try not to.

We will be packing a diaper bag and a stroller with us for a longer period of time than the "normal" parents… and our baby will stay younger longer for what her actual age is… but so what?

All that time we have ahead in the infant-to-baby-game makes us experts in the diaper-bag-bulky-stroller-hauling- and moving-business. We can have our eyes closed and still be able to formulate the right consistency for semi solid baby foods. We also look great doing it. No baby weight to lose, no more sticky-hair-sleep-less-nights-i-look-like-a-mess days... well maybe not a lot of that, and most definitely not a night-after-night-after-night (mare?) ordeal. Most importantly, we can have her and baby her for longer than any other parent in the world.

And the tears? Sure, there are lots of them, maybe more than what is considered "normal".... but what else is out of the norm is the amount and intensity of the "tears of joy" we get to experience. There really is nothing like having tears of joy... imagine that intense feeling of tears from sadness and grief, and flip it to the other side.... hard to imagine huh? ...we'll if you could only be me for a day, then you would probably understand where I am coming from, that is if a day would be enough really. Oh, we have many many many tears of joy to enjoy!


So, did my life change?

It most definitely has….


Who wants to live an ordinary life anyways?

So How Are ‘We” Doing?

I have contemplated really long and hard on whether I should write about a post regarding, since having Isabella in our life, our marriage situation. I am not quite sure about how readers will be reacting to this post… however, since the main purpose of my blogging is to share my emotions to other “special” parents like me, I felt that touching on the topic of “marriage” is something that you people might be interested to read about as I feel that perhaps, I may not be the only one who awas faced with the challenging task of  trying to balance the marriage on top of the already many things I need to juggle.



I have dealt with the once dreadful questions gracefully…. How are you doing? How is the baby? I have figured out a way to respond without having the need to dodge them. However, I was not prepared to be asked the question, “So, how is your marriage doing in spite of all this?”… just like how the previous 2 questions used to affect me, getting asked this question threw me into a crying fit in front of the person that asked. And as much as I have tried to figure out how I can dodge or answer this question with the purpose of hiding how I really felt, I figured a healthier way to approach it is to actually deal with the reality of how our marriage was really doing. It was not going well then.


But, just like I have found a way, and I may have to say, I have come around beautifully, dealing with how I am doing and how the baby is doing, things managed to come around also with the status of our marriage.


Just to be clear, right now, I am doing well, the baby is doing fine, and my marriage is okay. It really is. Yeah, we have our typical arguments and finding our way around our differences, which every marriage has. We are doing fine. It was doing fine right before Isabella came into our life and it is doing fine right now. However, I would have to admit though, that since having Isabella, we did have a big strain on our marriage. That time in between having Isabella until recently, was not only a dark and difficult time for me emotionally, it was also a dim period in our marraige


Since having Isabella, we fought more than we used to. We argued more than we used to. And the differences, it almost seemed as if there was no going around it. What made it tougher is how we both dealt with the reality of our situation. My spouse and I deal very differently with disappointment, frustration, despair, grief, and anger. And since we were both dealing with the intensity of the situation we were in, we needed emotional support… support that we cannot give one another because we were both dealing, trying to deal, with our situation


We yelled, we hid, we tuned out, we walked away, we escaped, we blamed, we became verbally abusive, and things were thrown if not destroyed around the house…. and the moments wherein we would want to be passive the other one wanted to be actively dealing, and when the other one is actively dealing, the other one chooses to be in a passive state. It was almost as if we would never see each other eye to eye ever again and I felt alone, isolated, and taken for granted.


We were in pain that we demand for the other person to understand. We were hurt that we wish for the other person to be more understanding. We felt weak and we want the other to take in the role of being the stronger one. But we were both dealing with our pain… we didn’t have time to take care of the other person in the marriage since we can barely take care of ourselves. We wanted to be the one to be nursed and understood and heard. We each wanted it to be about our bruised selves.What made it all the more challenging is that we cannot just take care of ourselves or the other person with what left over time we could spare, we had Isabella to take care of and boy did she need a lot of our time.


The first year went by really quick. We were busy with doctor visits, setting up services, and remembering medications. But, in between the appointments, the phone calls, the specialists’ visits and the prescription refills, we would try to cope. It was not easy. Isabella took up a lot of our time and yet we also needed that time to try and heal.


In the middle of taking care of Isabella, and the trying to not overcompensate with our son Eloi, and our healing, nobody took the time to take care of “us”… and our marriage suffered. Our self absorbed “but what about me” approach put a big strain in our relationship and somewhere there came more disappointments to deal with, which for the most part was the disappointment of not getting the emotional support we each needed from that one supposed person to really get it, the spouse. And with the disappointments piling up came the frustrations which then led to resentments.


Honestly I contemplated on running away, leave him to deal with all this. I thought about weighing the risks involved just to have that chance to begin again. I thought about it long and hard. But my heart belongs to my children…. Both of them, and more so to Isabella. I figured our marriage can take a back seat for now and I have got to figure out a way around my coping and the taking care of the children. My husband is an adult, he has got to figure out a way to take care of himself without having to have me do it for him, right?


Eventually I realized, that I do need him... we needed each other. I need him to be the stronger one or at least try to pretend to be. And I have to be that person, pretend to be that person when he needs me to be that person. I realized that taking care of “us” is not an individual job, it is both our job. We need to be together in the doing. We needed to be together in everything. After all, that was what marriage is about… 2 people becoming one. So, we started talking, which was more of trying to reach out to the other tuned-out person at the beginning, which then turned into arguing, which later turned into discussions… to commitments…and eventually evolved into both us working on everything together as one. Just like how it should’ve been since the beginning.

I came to experience first hand how things sometimes have a tendency to get worse before they actually get better, but with that came the wisdom that things are indeed bearable when two of you share the load. I  know that we still have the rest of our lifetime to go through many rough patches and managing to patch things up. We have a long ways to go really, and we have a long stretch of time ahead of us to keep on wanting to work things out… After all that is what making a commitment to spend the rest of our lives together is all about.

I take you to be my spouse, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part.

So if any of you out there is dealing with a rough phase in your marriage, this too shall pass. Keep your focus on each other and your family, and when things start to look like they are getting worse, work yourselves through it, because in the end the risks involved in the leaving does not, by a long shot outweigh the rewards of staying. My advice is that, in the face of all the negative forces that you will be encountering, counter it with love and more love each time… and of course, you also need to put in a lot of prayer… only God will help both of you get through this.

1 Corinthians 13:7 Love always perseveres. (NIV)

Love always perseveres and never looks back. Love never stops, never quits, never doubts, and never goes against the good. Love never loses sight of the goal of glorifying God with all we have and with all we do. Love perseveres over all obstacles because the stakes of winning are so high even thinking about quitting is not an option. Love perseveres because Christ perseveres, because God perseveres, and because the Holy Spirit perseveres. These three in one are love. Love perseveres because love is too exuberant to stop. Love has so much energy within it no one can prevent love's upward progress.

How Can I Help It?

How can I not help looking at other girls and thinking, “I wanted a daughter to grow up into something like that”?

How can I not help looking at babies that are the same age as Isabella and think, “she should be doing those things by now.”

How can I not help but look at younger babies and see how developmentally far ahead they are?

How can I not help but look at other pregnant women, and think, “Maybe she will have a special baby too?”

How can I not help but to feel shame upon admission of some of things that pop in my head, such as knowing that I LOVE ISABELLA, but, I am not completely over the disappointment (not her fault, I’m not blaming her, there is no one to blame really), and therefore I find myself that I am not head over heels in love with my very own daughter just yet.

How can I not help but to compare sometimes, to feel envy sometimes, to still feel pity for myself sometimes?

How can I not help but to feel a pinch in my heart for the inquiries of the many doctors we’ve met, or with things that should fell neutral like filling out forms and checking boxes at a doctor’s clinic?

How can I not but sometimes help to have to put on another persona when I do IEP meetings and remember to conduct it as a teacher and to keep it professional and feel that detachment to how close I really am to that whole IEP process?

How can I not but help to feel a sting when I work on my daughter’s scrapbook and scrounge for something to write about the things she can do month per month when she has not gone pass the 0 to 3 mo developmental range and her skill gains she has made are only for the “well-trained eye”?

How can I not but help to be cynical about the neutral well meaning comments and inquiries of people that know about my daughter? Or when you see someone approaching and they have that look and you just have to be ready to dodge the questions because you’re just sure that they are coming.

How can I not find it sarcastically funny that I have become a familiar face at the pharmacy, or having my voice being heard on the other end of the line at a doctor’s clinic?

How can I not but help to keep trying to use humor as a coping mechanism trying to find the funny in every situation, and yet catching myself sometimes go "hahahhahaha, well, wait a minute, that's not really supposed to be funny?" and then I laugh again.

How can I not but help to sometimes feel sadness come over me whenever we pass through the girl’s clothes section at the mall? That there is this aching in my chest just looking at baby girl clothes.

How can I not but help to feel guilt every time I need to lie to a stranger about my daughter’s real age when they ask? And to try to make sure that I have not told that person that my daughter is 3 months old for the past 3 months, such as the lady at the grocery store, who started wondering because she gave me that quizzical look?

How can I not but help to feel alone sometimes…. To feel that nobody understands, to feel that I do not get the emotional support that I need, even when I am already “screaming” for it? Or to feel alone and yet not wanting to be helped or supported?

How can I not but help to try and work through all this uncertainty and the not knowing what to do?

How can I not help but to go through waves of grief, even if they further spaced apart, less intense and more brief?

How can I not but help to shed some tears as I type this down?

How can I not but have to force to help myself every time I hit walls of moments like this?

How can I not but help to just keep on holding on to hope, love and faith and praying to god to help me through this, because god is really all I have… my refuge, my strength, my deliverer.

And although, I have come this far, when 11 months ago I thought id never ever bring myself to get to smile genuinely ever again, I know there is still a long way to go, how can I not help but to sometimes doubt if I am in a way making progress in this whole things taking time, things being a process, things coming in stages, taking things one day at a time deal?

How can I not help but to sometimes just put a mask on, feign being fine, and drown myself with busy work, so I don’t wallow in that dark pool that I have most challengingly brought myself to emerge from several months back? Because it seems that it works and I actually catch myself, hey I’ve been feeling alright this past couple of months.


How can I not help but to give in sometimes to the many complex emotions, such as  right now, just to feel that cathartic release.

A Temporary Loss of Perspective

I just realized that my Isabella stopped playing with sounds… she does not coo, or babble as much as she did. I realized that she hardly really babbled or cooed. She would however make sounds that seem like she is calling for us. But that was mostly it.

A lot of children with WHS are nonverbal…. So if my Isabella will grow up non verbal, it should not really surprise me. However, when I spoke to a friend of mine who is a speech pathologist regarding this babbling issues I have been having, she adamantly had to confirm my strong suspicions that my daughter would most likely fall into the non verbal category of WHS children. And as much as I knew about this possibility, I felt a pinch in my heart.

So, this weekend I found myself in a place where I was praying fervently…. In that moment of sincere and deep prayer, I was bargaining with God. I was trying to cut him a deal to perform a miracle and make the “speech happen”.  Then I started crying.

I cried not because of pain…. I cried because for the first time, I understand the meaning and depth of the word “desperation”. I was in a very desperate place. I came to understand that “desperation” can so easily be mistaken for hope, however the underlying emotion between hope and desperation are entirely different emotions.

Forlorn hope aka desperation is losing focus of the good promises that lie in the future…. Positive hope is keeping things in perspective and having a happy and contented disposition… it is more than just optimism, it is believing, it is having faith, it is taking in that unknown future with a trust that is enveloped with spiritual grace.  

I then stopped my bargaining process with the Lord. I came to realize that there is no need to bargain for anything. I get what I get and I should be content.

Why pray for a miracle?

My daughter is not sick.

A trade or bargain will not change things.

I don’t think that it could ever be possible to wake up one day and find my Isabella “normal”.

Nothing is wrong with having a daughter like mine.

Nothing is wrong with Isabella.

She is fine and she is happy and she will be who she is going to be and she will be okay.

Everything will be okay.

Why pray for a miracle?  

Have I not completely accepted her?

I should by now.

I should have, by now, accepted my lot wholeheartedly.

Next time I find myself in a place of desperation… the miracle I would be praying for is for my complete conversion to acceptance.

I so desperately need that kind of miracle in times that I lose sight of positive hope.

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.

Letting Go of My "Perfect" Child

Dear Perfect Child,

If you were here you would have been crawling by now. You would have been holding your head up steadily and can manage to sit. Perhaps by now you are already able to expertly roll from side to back, back to side, and from your tummy to your belly up. I would probably need to keep a really close eye on you so that you don’t roll off the bed.

If you were here, you could’ve have been eating semi solid foods and make a big mess at feeding time. You would have already stained a lot of your clothes with the pureed vegetables and fruits. I could have already enjoyed seeing your many different facial expressions from your first discovery of varied textures and tastes.

If you were here, you would have already been touching my face and cry when you do not see me or when I leave each morning for work. You would want for me to carry you a lot and snuggle on my chest, and I will try my very best to not complain about how heavy you’ve been getting.

If you were here, you would be putting everything in your mouth, including your toes. You would have already been exploring toys that light up, move and make music. And this will be amusing for you to watch, even if it can only hold your interest for a brief moment.

If you were here, we would have already had a lot of back and forth coo conversations. I would probably already heard a lot of shrieks, and babbles, and mmmmms. I would have already heard your cute little baby giggle.

If you were here I would have already gone through 2, maybe 3 sets of baby clothes that you have outgrown and you would have been able to wear your little dresses, your cute tights, and have a pretty ribbon on your round bald head. You would also have been drooling all over your cute clothes.

If you were here I would not be feeling this tremendous longing.

But you are not here.

If you were here I would not have the need to write this.

But you are not here.

You are not here because god has chosen me to do a special task. He chose for me to go through a different journey… one that will change me immensely. One that makes me feel pain and loss, in order for me to fully appreciate joy. One that tests the limits of my spirit and strength.

Instead of you, he chose me to have Isabella, because God wanted me to have a better outlook on living. Because he trusts that I am better able to take care of someone “special” instead of someone “perfect”. He wanted me to do this unique task so I can have an extraordinary life. And because of this, I am humbled... and because I am humbled, I am blessed.

And because you are not here, I need to let you go so that I can be a better mom to my daughter. I need to let go of the idea of having you, and as agonizing as this may be, I have to.




... Goodbye my perfect child...




Should you ever wonder though, I wanted to have you. But God had other plans. He had another child that he deemed perfect for me to have.

Love,
Nanay

Second Guesses

* A special needs mommy once told me that the grieving process does not go at one time… she said that it comes in cycles. I would have to agree with her. This weekend was tough for me. I haven’t had a tough day, or a series of tough days, for that matter in a long time. This weekend made me second guess myself…. Perhaps I am not cut out to do this.

* A friend had a baby this weekend. A perfect baby girl. When we visited you could really see the joy in her eyes, that happy embracing feeling of finally meeting your little one. Though I do share her joy, I found myself jealous, and bitter, and angry (if it happened to me, why didn’t it happen to you?). And to realize this made me hate myself. This is not the version of me that I thought I would turn into. I started feeling pity for myself and I felt really weak, and I second guessed the “strength” in me, and it almost felt like I had ran out and that I was going to finally lose it. Or maybe I already have…. see, I’m second guessing even my current state of sanity.

* I once asked a friend how long it took him to accept that he has a child with special needs. He said that around 6 months after the diagnosis, he found himself at a better place. I thought I was doing really great, I have been proactive, I have kept up with appointments, I am keeping myself informed, I am frequently communicating with the specialists working with Isabella, and we’re always on a look out for more resources that we can tap into, more services that can be provided for her... but this weekend brought a whirlwind of sorts… I had to second guess my progress… maybe I’m wrong to assume (and rush myself) that I’d feel better soon.

* My mom also mentioned something about “karma”. (When will this “karma” talk ever stop!!!) It pains me that even the suggestion of “karma” popped into her head, because that implies that I may have done something really terrible to deserve this. Something sooo bad that all the good things I have done did not off set the really horrible things I did enough to have been granted a child with special needs. Like having a child with special needs is some sort of punishment. It is much more painful that with that mere suggestion she probably have missed the fact that what my mom was equating with “punishment” is her very own grand daughter. But somewhere there, I did second guess if perhaps I was a tremendously horrendous person and that maybe somewhere there I do deserve this.

* My husband reminded me of the conversation we had with the genetics doctors back in December, that the mutation could have happened anytime at around my 16th week of pregnancy. They couldn’t really know for sure… but I caught myself back tracking on the dates and flipping through my calendar wondering what I was doing around the 16th week of my pregnancy… and although literature supports that de novo deletions are spontaneous mutations, I second guessed myself. Perhaps I could have done something to have caused the mutation, that maybe I did this to my baby. Not that the “cause” really matters at this point… I guess somewhere there I just needed to have something to blame it on, thinking that if I do, it might be easier for me. But even with that, I’m second guessing if it would really make it less of a challenge. “Not knowing” is just soooo difficult.

* I was also planning on going on a road trip to Utah at the end of July. The plan was to go attend the WHS conference. When I browsed through pictures of WHS children of different ages, I found myself crying over the pictures that I saw. Not because it made me sad, but because the possibility of how severe my Isabella could be terrifies me. It still does. And as much as I’m trying my best to resist the urge to give in to the fear, it almost feels like that’s the only option I have left. And if I do, what happens next? Now I’m second guessing attending the conference. It feels that participating could either make me or break me. I don’t know. I don’t know. I don’t know. I’m soooo confused.

* Ever since Isabella’s G tube placement surgery, we were able to take her more outside with us, not because I was ashamed of her, don’t get me wrong, but because now it is easier to bring her because there is no dangling nose tube to carry her with. Several random strangers would approach us every time, ooooo-innng and aahhh-ing at Isabella and telling us how cute she is. I felt shame for myself, because I would look at her and I would still see the syndrome. Whenever the strangers ogle at her, all I’m thinking in my head is that at any second they are going to comment on her spaced eyes, her low set ears, her philtrum, the glabella, the prominent forehead, etc. Then I found myself second guessing that maybe somewhere there my daughter is “beautiful”…. that “beautiful”. I feel so small to even admit this and write it here. Shame on me…. Shame on me… tsk, tsk, tsk.


* Even if I have found myself telling myself that I have “accepted” my daughter… this weekend made me second guess my progress towards “acceptance”… it almost felt like there was this very thin and vague (maybe even ambiguous) line between HOPE and DENIAL. I am not sure which is which of which I am feeling at a given moment. Does accepting mean that I feel happy? Sometimes it seems useless to even attempt hoping. But then again, I wouldn’t have anything to grab onto to help me to keep on going. HOPING, though seemingly futile, is my only hope.

* I am second guessing on posting this post for fear of judgment.

Life Goes On

I thought my life was over the moment that it became official that my daughter has special needs. There have been many nights wherein i was crying my eyes out greiving for the loss of my perfect child, grieving for the loss of the child that i want and wish for my daughter to be, and grieving for the loss of the life that i wish to have. Back then i felt that my life is over and suicide sounded like a very sweet option... if only i can find that courage in me to do it. But i can't and i felt immense fear and shame and i just wanted to sink in a hole and stay there forever. The only other option i felt i had was isolation.

But life as i know it cannot stop. Even if i bury myself in the darkest abyss, everything will keep on moving forward and if i do not go with the flow i will be left behind if not be forever stuck. I had to choose to unfocus on the "have nots". I have to stop resisting the urge to move on and rid myself from finding comfort in depression and anger.

I have a husband and another child that depend on me. I have my family, my friends, my career. I still have the "haves" for what can make my life something to be worthy of living. I have Isabella. She needs me.

I should not let fear of the uncertain stop me from moving on. And just when i started to teach myself to take things a day at a time, i discovered (or is it rediscovered?)the gifts that each present moment brings.

I learned to see the what lies behind the tape and NG tube on my daughter's face.... and let her beauty shine way past what the doctors call "dysmorphic features". And upon giving my daughter credit that she has a potential to develop, i saw the strides that she was able to make in such a short period of time. I appreciated each eye contact, each moment that she visually tracks, each cooing sound, each progress on head control, each effort to put her hands together, each grip on my finger, each incidental effort to put her hands in her mouth or to reach for things... each smile that was meant for me.

The smiles were the best part... it took her 3 1/2 months to flash us her social smile.... that smile that let me know for the first time that she recognizes mommy.

I love you baby Isay! There are a lot of "nevers" that i have read about regarding your syndrome, but we will show the world that you are not a mere statistic and you are capable of so much more than what literature dictates.

This spring break, the whole family went for a 3 day San Francisco getaway... i realized that my life has not stopped at all. It almost feels like it is barely beginning. And the discovereies of what lies ahead, 'im sure, will be an exciting adventure.

Roller Coaster

Worry, worry, worry, pray, pray, hope, pray, shock, SHOCK! Scary.. shattered.

Denial, No, No, No, NOOOOOOOOOOOO!

Sad, cry, sympathy, condolences, grief, grief, mourn.

delusions, demented, development, daughter, dream, dead, diagnosis, deletion detected, de novo... defeat.. DELIVERANCE!

demons, demons, drive away the demons!

DON'T, DON'T, DON'T!

Fear, unknown, lost, loss, grief, anguish, scared, anxious.

Anger, anxiety, adapt, accept? accept? accept? Disillusion.

Research, reason, reassurance, reassurance, reality? reality? really? REALITY!!!

Alone, isolated, alienated, uncertain, paralyzed, pity, pathetic

Envy, empty... erase, escape, emotional.

Hateful, negative, bitter, resentful, rebellious, remember, retrace, regress.

Disappointed, disheartened, devastated, discouraged, pessimistic, dying, despair, depressed…. deeply depressed.

Incapable, incapacitated, suicidal, discouraged… tired.

condition, cause? chromosome, CRAP!.. confusion, clueless, composure, CRAZY, CRAZY, CRAZY... karma? QUIEEETTTT!

Cornered, no cure! Crushed, cursed? Cry, Release, regret, resent, restless…. Tears… rain, rain, rain.

Shame, guilt, skeptical, distrustful, sulk, misery.

Nothing, numb, nonchalant, empty, woe, why? Why? Why? WHY?

Fate or faith? Pray, pray, pray… PRAY!

Suppress, silent screams, SCREAM! SCARED! Sigh, sigh, sigh…

Singled, random, special needs, syndrome…. Sorry, sorry, I’m sorry. I’M SO SORRY!

Victimized, robbed, ripped off, wronged, run, run far, far away?

Forever dependent… future? What future? Cannot fathom? Fear… FEAR!

Dark dark dark tunnel? Light at end of tunnel? Freight Train at end of tunnel? Fireflies flickering in the tunnel? Dark, dark, dark….

Grief, guilt, gray area, gone, give in…Gasp! Gosh! Just Go, Go Go! Gotta Keep on going, going, going!

Truth… bitter truth…. Tragic or Test? Need time, time, time

Lifeless, dejected, dismayed, suicidal, death wish. Doomed? Damned? DAMN!

Reserved, suspicious, wary, preoccupied, People, paranoid… people, pity, self pity… pretend, pretend, pretend.

Inferior, sensitive, insensitive, annoyed, insulting, unwelcome… understand… understand, understand. Unsure, but keep trying to UNDERSTAND!

Humiliated or humility? Humble, humble, hoping, hoping… HELP!.

Bruised, Broken… Burden or blessed? Blessed… blessed… blessed. Baby, Baby, Baby.

No, No, No, NOOOOOOOO! Yes.. yes… yes… yes.

Weak, Where? Wait… worry, worry, WHAT? Woe... WHY! WHY! WHY!

Therapy, Specialists, Hospital, health, heal, please heal… but How? How? HOW?

Pain or patience? Panic, Patience…. Patience…. patience. PLEASE!!!

Forward, forward, backward, forward, forward, forward, backward, forward… keep on going forward.

Skeptic, sarcasm, sorrow…strength, strength, need SPIRITUAL STRENGTH!

Optimistic? Not yet…. Open, open, open. Okay…. It will be okay. It will be okay.

Unsure, uncertain, upset, cannot undo… understand, understand, UNDERSTAND!

Anxiety again and again, and again, and again.

Explain, explain, explain over and over and over...

Endure?... Eventually.

Someday.. soon, soon, soon, soon, soon.

Proactive, progress, progress… paralyzed… progress… paralyzed again… progress again.

Challenge, change, change, change.. CHANGE!

Advocate, adjust, adapt, accept? accept? ACCEPT!

Enriched? Lucky? Gift? Growth? Learning? LORD HELP ME!

Receive, surrender, let go…. Thy will be done.

Grace? Joy? Hope? Love? Peace?

God is Good… God is good.. God is good.

... Coping ...

When faced with a difficult situation we need to find a means to cope. In the process of coping we will find ourselves in a state of anxiety which results in feelings of mental and emotional tension and/or stress.

When anxiety is felt, our mind responds by seeking a means to problem solve its way through the anxiety, either to reduce it or to get rid of it completely. When the nature of the problem is so complex, we sought to find mechanisms to defend ourselves, our bruised egos.

A typical reaction to protect the self is taking oneself away, often times physically, from the unpleasant situation… your rational means to escape.

But what if you cannot escape the unpleasant situation? What do you do then?

I am coping the best way I can. I have found myself resorting to healthy and unhealthy means to cope. Means that were not thought of deliberately, nor result in actions that were intentional. Means that lead me to an unconscious route to try and transform reality… my reality.

I have intellectualized my situation to objectively understand it.
I have rationalized to the point that I have created false justifications.
I have found myself in moments of regression, crying my eyes out while in fetal position.
I have resorted to avoiding the queries about my issue, including my own mind’s queries about my issues.
I have had many moments of emotionality, having outbursts, manifesting extreme emotions, and acting out like a child having a tantrum to the point that my husband needed to push me in the shower so I will calm down.
I have inhibited myself from making goals and lowering my expectations of my daughter… yes to the point of seeing her as a statistic and not giving her enough credit.
I have delved into a world of fantasy every now and then… one that involves a miraculous cure to undo the syndrome, or that the cysts in my daughter’s head will press on something to heighten her other senses (like having super powers).
I have idealized trying to ignore the negatives and focus only on the positives.
I have found myself sometimes procrastinating and delaying so my husband or my mother in law would put in more care time for my daughter.
I have found myself in a state of pretense… a state of denial that I am doing alright, that I am strong, that I can do this, that everything is okay.
I have found myself repressing thoughts trying to stop myself from thinking dark things.
I have found myself trying to find the humor out of this situation, only to realize that it is more of witty sarcasm that is spewing sporadically from out of my mouth.
I have found myself resorting to symbolization by turning my thoughts (good and bad) into metaphors.
I have trivialized my circumstance to try and pretend that this arduous predicament I am in is not that big of a deal.
I have thought of ways to “undo” things to reverse the present, but there is no such thing as “undoing” (I don’t think I can grow a chromosome arm on a petri dish).

I have, a million times, flexed and cartwheeled and stretched the boundaries of my cognition to find understanding. BUT the coping mechanisms I have resorted to have not really helped lessen the anxiety. The coping mechanisms are not a cure to my situation. It is only a means to adapt to the situation… mechanisms (including writing) that provide a temporary means to escape.

There is still this constant worry about Isabella’s outlook.
There is still this constant fear of the unknown future.

And I feel powerless… helpless in my daily confrontation with reality.

But I try… I really try.

Eventually I know I will get to that place where I will find myself transformed and I am once a gain a fully emotionally healthy functioning part of society.

I try…. every second of every moment of everyday I try my best.

Kidney Reflux

Yesterday, we had to take Isabella back to Palo Alto because we have a VCUG appointment. The renal doctor just wanted to check for kidney reflux. I guess it was just a usual medical route for children with hypoplastic kidneys.

The moment our car turned towards the entrance of the hospital, I cried. The memories of our stay in that hospital just came rushing back. I have come to associate this place to bad memories and more bad news. As we were waiting to be called inside the radiology lab, I found myself whispering in Isabella’s ear. I told her that this is just one of those routine checks that the doctor has ordered and that I assured her that we will be leaving the lab knowing that she does not have kidney reflux.

I was wrong.

Turns out she has stage 3 reflux on her left kidney and she would need daily doses of antibiotics to fight infection from this point onwards.

So there… I have to add this to her already long list of things.

Sitting On the Parent's Chair

I'm officially on the receiving end for special education services.

Today we had our very first Individualized family Service Plan Meeting as my daughter was determined eligible to receive services via the Early Start program of the regional center in coordination with the special education department of the county office of education.

The day before I had to fill out forms to get my daughter placed for the early intervention services, your usual start up process... i had a melt down filling out the forms. After all, it was different this time.... i had to fill out a form as a parent rather than the case carrier/special education teacher. I almost didn't finish filling them out.... but i had to and eventually i would have to get used to it.

It was weird seeing my name on the parent line on the meeting notice form when usually i would find my name at the bottom as the case carrier.

It was quite odd to meet people who are colleagues having to take in the role of service providers for us, the parents.

When the psychologist/administrator designee asked me about my daughter, my initial thought reaction was "Didn't you read/review the files prior to this meeting?"... most likely this was due to the fact that i already am tired giving a litany of the complications that my daughter has. But i did it anyways. I almost choked on tears, but I was able to hold it up pretty nicely.

We were read our rights, blah blah blah we know that already as we talk about it with the parents we've worked with. We were handed a book of resources in our area, the same handbook that was in a corner in my husband's classroom that he would pull out to provide resources with the parents he works with. We heard the detailed reports and results of the assessments that they have done with Isabella, and goals within the year were discussed. Same process and meeting agenda that we are already familiar with when we facilitate IEP meetings.

And although the purpose of all this is to have a plan of action to help my daughter reach her fullest potential... somewhere deep inside I felt helpless, clueless, and weak. Although i may have to say that i was able to fake it really well.

Advocating for my very own flesh and blood feels very different as i still feel crippled by the emotions that come with the reality of my situation.

It feels a little weird having to be on this side of the table. It might take some getting used to.

Sighs...

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…

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.

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