Monday, February 20, 2012

Angels along the way

This morning was particularly difficult to wake up, since the Nicu routine is like going trough the same day over and over and OVER again, at this point I hear the monitor beeps in my sleep and the only thing that David and I don't do just yet is giving shots. Pretty soon the Nicu nurses will feel their job jeopardized because we got it all covered: diaper change, temperature check, suctioning,
g-tube cleaning, knowing when to freak out when the monitors go off, etc.

My alarm clock went off this morning and I felt my chest and stomach literally hurting with grieve and sadness, I really just wanted to crawl in bed for a little longer... forever maybe? So the first big accomplishment of the day was putting one foot in front of the other, take a shower and head out to the Nicu. I held Zach in my arms and I felt dispair, I felt hopless and I fell asleep with him in my arms, with all his wires tangled up and with the feeling that there was just no way that David and I could pull this off.

My dad has always believed that I'm pretty though and he tells me:" I don't know how you will pull this off, but I just have the certainty that you will, as you always do with everything else." Today however,  I felt specially restless. I wanted to just leave the hospital screaming and crying and all of the sudden she was there looking for me, the Special Needs Godmother, an angel: Ms Joe.

I love her new york accent, she only takes care of special needs boys (sorry girls) and check this out: She is Baby hungry! when she met Zach it was love at first sight, he stared at her, and even started to make noises and took the pacifier for her. When you've heard from the doctors that there's just no hope, that they fear for his life because of his breathing and muscle weakness and because of the lack of diagnosis, she just appears to tell me that there's always hope, that doctors now a days say: "it's genetic" when they can't figure it out. She says that Zach's gift is to be cuddled and loved, he is very aware of what's going on and he knows that we're there, loving him. She's my Xanax.

"Never loose hope" she says when you're about to just give up, just like a fairy Godmother will do when you're about to just loose it all. 

She makes me feel that everything will be ok, that David and I will be able to give Zach a good life: one filled with love. Thanks to Zach I had the pleasure and honor to meet Joe. She also takes care of a college boy with disabilities, she took care of a boy with Cornelia de Lange syndrome, and another boy with CP.  I'm so grateful that she's in our lives now. What a gift, what a lady, what a godmother!

Saturday, February 11, 2012

My son is not Sick, he is...Zach

As a rookie special needs mom, I can finally pinpoint to the first of many struggles that we've been facing in this bumpy road. When we knew about Zach's ultrasound findings, I did pray for his miraculous healing, I read Psalm 139 each night and cried over it, sobbed, begged for a “normal” child, or just an orthopedic problem, but the ultrasound was just the tip of the iceberg and we are still trying to figure out the extent of the ”problem”.

I also asked everyone to pray for his healing, for him to be “normal”. Now Psalm 139 has a whole new meaning to me: You knit me together in my mother’s womb, I praise you because I’m fearfully and wonderfully made… and that is probably the answer to my prayer as painful as it can be. God maybe telling me: I’m not fixing/healing Zach because he’s not broken, I knew him before I made him, I love him that way and my ways are not your ways. Zach is not like the other babies, we don’t know what he will do or not, but we do know one thing: He is fearfully and wonderfully made.

Now a month in the NICU later, I still encounter people with good intentions telling me: I hope he gets better soon, so he can go home. (?????) Some other times I tell the whole spill of issues that my boy has, and then I hear: Well, he can outgrow those things, have all the surgeries and therapies thanks to all the advances in today’s medicine then he will become normal. Seriously? I feel for the people with sick babies I really do, but all this time I’ve been talking about a whole other animal that people (myself included)  has a harder time to accept: The disability.

My son is in the NICU not because he is sick or has a disease and needs to get better to go home. He is there because they basically need to figure him out, make him stable, they need to make him as functional as possible so I can take care of him with the best possible quality of life. A disability is not a disease, the difference seems subtle but it’s not.  Accepting and understanding that difference is the first step to accept my son or any other child with disabilities.

He is not sick, he is... Zack.

Monday, February 6, 2012

Giving Up

Today I'm feeling a strange sense of peace, strenght and acceptance, and I wonder how long it will last. For the first time in 3 months I dared to wear mascara and I woke up with the firm purpose of not crying, and I didn't, not one tear, the whole day! HUGHE achievement.

I was able to encourage David, and reassure him that we have a great boy that will make him proud one day. He is amazing no MATTER what, I love my boy blind or not, swallowing or not, moving or not, the love is the same, regardless. Do I want the best diagnosis, prognosis and productive life for him? absolutely, and I have to hope as hard as it can be sometimes that he may still have a shot in the mainstream life, but as bad as I want all that it's beyond my control, I feel peace knowing that God made my boy, he knew him before he made him, he knows him and labeled each one of his days and mine, and David's. He is in control, he's GOT THIS.

Above all my son's life has meaning, value and purpose regardless of what he does or doesn't do, he is a miracle and he is a son that I have with a man that I truly love and that I'm grateful and honored to call my husband. Also I'm beyond tired of begging, sobbing and praying that my "wishes" come true, I don't even know what to pray for anymore, I'm exhausted. I GIVE UP, I give up the false belief that we have some control in situations like this, I give up the belief that I'm in control, right now it's in your hands Lord, you take over, just PLEASE take over.

This is really liberating, so much that it surprises me, still no tears and I have been able to see Zach for who he truly is: a chunky little angel. My mascara is still on and the only thing that I have left to do is wonder. How long will this last?

The First Bite of Many

Zach had his first surgery which included 5 procedures:

1. Muscle biopsy = The one that may give us a diagnosis.

2. G-tube placement = Now we are officially "Special Needs"

3. Nissen Wrap Fundoplication= I just learned to pronounce it!

4. Hernia= One less thing to worry about.

5. Circumcision= Freebie / You might as well since we're at it.

My baby was brave and strong as usual, no surprise there. The real surprise is how calmed we were while we were waiting since God literally held me and David by the hand all the time. When we got to the NICU, a volunteer from our church was there waiting to pray for us, then Josh and Denise dear friends from our bible study group came to bring us breakfast and keep us company for the two and a half hours that the surgery lasted, my mom in Colombia went to the church early to pray for Zach, tons of people "liked" our status and commented on Facebook and last thing we know, everything was said and done and our boy was recovering and waking up. Big praise there!

Now I'm left with mixed emotions regarding the G-tube. On the positive side, we are a step closer to take Zach home and we will be able to finally see his face "tube free", but I'm sad because now he has a hole in his tummy, he may not be able to taste food for a loong time, I will not be able to breastfeed and know how that feels like. I think that we both have been cheated when it comes to bonding, and I know that we're missing out: cuddling time, being silly time, giving him a bath time, going to places and bragging about my baby time. However, if we are able to get his  feedings set we will be able to bring him home, to move on with our lives and to finally have cute pictures for birth announcements of the three of us without a NICU background. Is that reaally too much to ask?

Anyway, I am grateful for all the support that we had, for the chance to kiss his G-tube free belly one last time before the surgery, for having David next to me all the time and because we were able to go with Zach to the elevator and join him on his "field trip" until the very minute that they took him into the operating room. David and I held each other's hands and cried after they took him, and I knew that it will be the first surgery of many more to come, the elephant is a tiny bit smaller since we took the first bite...of many.

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