You know it's tough when...

You know that things are tough when your prayers veer into the delusional spectrum.
When you have nowhere else to look but up, and if your cry to God sounds like this,
you know you're in for a fight:

"Dear God, I promise to give up coffee and diet coke FOREVER as long as you give my son an orthopedic problem or a metabolic disorder." Crazy! I know, but at times this just makes sense.

You know that you have it rough when somehow Cerebral Palsy, Down Syndrome, deletions, duplications, translocations, arthogyposis, g-tubes, trachs, niessen wraps, micrognatia, hypotonia, or hypertonia are just part of your daily vocabulary, suddenly it's not "scary" anymore and it becomes just as familiar as someone else saying: Pass the salt.

It's tough when you pray that your excess or lack of amniotic fluid or this club foot or cleft palate, or polidactilia, or what have you is just an isolated issue, an not a symptom of a larger picture.

You know is rough when even the most well intended comments from family or friends just clash, sound ignorant, unnecessary, when they are themselves at a loss for words and as much as you want to cut them some slack, you just feel stabbed in the stomach every time that someone wants to give you some "advice".

You know how hard this is when you just can't possibly go on, but suddenly you get a letter, or e-mail from someone saying: I have no idea what you're going through, I can't even imagine, but I'm here for you, I'm on my knees praying to the God of Gods for you. Then you open the door and there's food or flowers or a card in your front porch from someone that you barely know, and you're humbled, grateful with tears in your eyes and your face in the ground and all you have left to do is praise God. 

Zach's story Part I

Some background info on this post: This post was actually a Thank you e-mail sent to all the great moms in the blogosphere that helped me out tremendously sharing their experiences about their kiddos. I'm publishing this message now, just to get everybody on the same page, and as I said before to make things less random. This is how it all goes:

22 weeks into my pregnancy with Zachary, the doctors were concerned with the position of our baby’s hands and feet. I had and amniocentesis that came back “normal” and we were told that there wouldn’t be a diagnosis until he was born. Our best case scenario would be an orthopedic problem that could be corrected using casts, splinting and lots of therapy; the worst case could be that the fixed position of Zach’s hands along with his clubbed feet would be a symptom of a muscular problem; worst of the worst there is no way that this would happen to us because this things only happen to other people scenario, would be something involving the muscular and neurological system as well. 

Needless to say, it was an emotional roller coaster throughout the rest of the pregnancy for me and my husband David;  lots of tears and lots of breakdowns and crying (ugly crying filled with: why my baby?? Screams) lots of tears that all of you know up close and personal. The only thing that our specialist was able to tell us was to be ready for “anything”, whatever that meant. Hubby was in total denial praying for a miracle healing, fasting and sneaking in a beer or two, he wouldn’t even allow me to mention the words “special needs” because he would break down, and I needed desperately to find support somewhere.  I goggled myself to death until 3:00 am every night of everyday and that’s how I came across the blog “Love that Max”, then I started to read comments from other moms and then I read their stories too and that was it for me, I got hooked. There was someone out there sharing the battle. 

More to come, 
Continue to Part II

Zach showing his adorable chubby cheeks and pout. 

This are the blogs that helped me so much (not in particular order, just trying to keep things with some logic here):

Love that Max

Uncommon Sense

Jacks journey and then some

 Finding Normal

 Connors Song

Time to regroup and rethink

I haven't posted anything lately, the reason being is that too much has happened since my last post. So much, that I will have to rethink this whole blog. I thought it was going to be a blog about special needs parenting, but I guess that an adjustment will be in order. Basically I don't know what this blog will be about ( Let's just pray that is not about cooking because as my husband would be happy to testify, I pretty much suck at the whole thing of using heat to transform raw ingredients into foods adequate and safe for human consumption.) We shall see; and in the meantime, we'll write while this thing gets less random.

If you read this, you probably don't have me on your facebook, just to update you this is what I posted on 03/13/2012:

Our son Zachary Owen is completely healed. He is with our heavenly father, playing with all the angels, he met our savior Jesus at 7:32, he was two months old. God lend me one of his angels for a little while, he will be forever loved and remembered, fearfully and wonderfully made he honored his name: Zachary which means remembered by God, Owen which means Celtic warrior, and boy he fought the good fight. We will always love you my little angel, will always miss you and I know that we will see you again in heaven and you will be there with your arms open wide ready for us as the most bright and shiny of all souls. Have a good night my sweet baby, mommy loves you very much. 

More than a month has passed, and it still hurts and feels as if it was yesterday. This little guy broke my heart into a million pieces, humbled me and showed me love and God's grace in a way that is still beyond my comprehension. I guess that in the meantime, I will figure out a way to glue this pieces back together somehow, as I will try to thread this blog in a way that makes some sense, even when things don't make sense at all... I guess that it doesn't hurt to try. 

It's 9:43 pm, at this time my little guy probably would've been on his continuous feeding, but now he doesn't need any of that. I would give anything to just hold him again or cuddle for just one more night, but I can't. Who knows what I will do now with all this broken pieces, with all this love, with all this baby gear still in the boxes, with all this diapers, with all this sudden "extra time", the only thing left to do is pray that this becomes something useful for someone, someday.

I still miss you "mi pulguita"
pulguita: little flea in Spanish. 

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!

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.

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.