Tuesday, May 22, 2012

Fearfully and Wonderfully Made

There is indeed a plan and a purpose for every life, and it took a Zachary for a mediocre hard headed christian like me to finally understand just that.

If you are human, 99% of your DNA is identical to all your other fellow humans out there. It's just that 1% that makes the difference between you, me, Zachary or Albert Einstein. It is proven that there is an identical blueprint for every human being, as if we all shared the signature of the same artist, as if there was after all, some thought behind the whole thing.

And what is a 99% of a tiny DNA molecule really? My best attempt at understanding all this, hoping that I don't get any doctors or scientists offended, is that we know now that there is indeed a code, a very specific code of instructions imprinted in every cell of our bodies, a very long code with approximately 25.000 genes decoded so far. This numbers may be in constant change as science keeps progressing by leaps and bounds, but regardless of that, the blueprint is still there.

If we basically share 99% of our DNA, how come that we still get to be so judgmental, so entitled and stiff, how come that we still have comments out there such as: "You have good genes", or "You carried the gene that was passed on your son/daughter, that caused this or that disorder". We all come with 99 % of that blueprint. As simple as that, and I just don't see the randomness in this or that disorder any more, because there's only a %1 that makes all the difference. How can that be random with so little room for changes?

How can THIS be random?
It's mind boggling. Just as mind boggling that this %1 left, makes all the difference that brings our uniqueness, that brings our challenges and our own disabilities, some visible some not. It brings the best and the worst from us, and it makes our brokenness and sinful nature flare, and Gods delights on that because he knows us full well, and he loves us regardless of our flaws. This %1 brings our unique features, skills and talents that we have been gifted with. All in code of four letters: A-T and C-G, four letters carefully and microscopically arranged with the most sophisticated copy-paste system known to man.

For me, it just takes a bigger leap of faith to believe that this was a "spontaneous" mutation, or a random accident, or something that "just happened" because we had bad luck in all this baby making ordeal, when it is evident that Zachary in his disability and with all his NOT DOING'S, was just as powerful as a gifted and talented child, he brought a lot to the table and touched more lives in two months than whatever I've managed to do in 30 years, having a fully enabled body. There was thought and purpose in the life of my son, and I find it very hard for someone to come up with enough evidence to convince me otherwise, but I would definitely welcome the challenge.

Even when scientists manage to classify the whole code (Which I believe that sooner or later they will.)
Even when find the exact locations responsible for our facial features, height, hair color, mental ability or lack of it, diseases, deformities and disorders, that would only support even more the idea that there is indeed a thoughtful purpose of creation for every life. Not that I pretend to understand it, but I have a very hard time believing other wise, just the tale that this is all a "Survival of the Fittest" quest just falls short.

I believe that good scientists should be willing to go where ever the evidence leads them, and I believe that they would be speechless and in awe , unraveling each day millions and millions of more questions. God is infinite and there's no way that we would EVER outsmart God, the more knowledge we gather, should only contribute to humble us more and more in front of his power.

Just my clumsy attempts at understanding the whole cellular division process, where the DNA is arranged and paired  (or not) in our chromosomes gives me a bad headache. Worst than any hangover that I got to experience during my crazy college days. Just the fact that it takes very advanced microscopical machines to copy and reproduce all the information that originated from two small tiny egg and sperm cells, that end up with a human being with a soul, is just way beyond my comprehension.

Psalm 139:13:          
For you created my inmost being;
"You knit me together in my mother's womb"

I've seen countless 3D computer animations of the cellular division (Which drives my husband crazy).
and it shows how the DNA double helix shape unfolds and opens up to let it's information to be captured and reproduced by this microscopical machines once, and again and AGAIN, looking a lot like an industrial knitting process of something magnificent. We may call it genetics now a days, and for some people this is still some sort of science fiction, but the bible outlined this truth in this Psalm, more than 2000 years ago!

Psalm 139:14:  
"I praise you because I'm fearfully and wonderfully made"

I praise you for the 99% that makes me human like everyone else, and I praise you for the 1% that makes me unique, that you know full well, the 1% that makes me whole and broken at the same time, and that YOU somehow love and know better than myself.

Psalm 139:15:  
My frame was not hidden from you 
when I was made in the secret place, 
when I was woven together in the depths of the earth. 

God didn't "drop the ball" with my son. He knew me, he knew David and he knew each one of the decisions that we would make or not, before we even thought about them. He knew our fathers and our father's father and all this people had to happen before we even happened at all.

My eggs formed in my ovaries when my mom was about five months pregnant... with me! The egg that eventually was going to be Zachary had been there all along too! Before I even took my first breath! This is also true for about every woman in the world! That is just something else, how can that be random?

Psalm 139:16:
Your eyes saw my unformed body,
all the days ordained for me were written in your book
before one of them came to be.

One happy family!
God had a clear plan for Zachary. He came with the mission to leave us with nowhere else to look but "UP" because despite all the amazing doctors, the tons of tests, the ignorant comments and the supporting family and friends, we were at a loss for answers. God showed us with a child as broken as mine, all the suffering and need that is still out there, he painfully pointed to my selfishness and self centered world and shattered it to pieces, just for me to finally be able to step up to the plate, and be Zach's mommy. He left me with nothing else to do but praise, and sometimes I feel sad that it took as much as my son's life for a hard headed person like me to finally get it.

But then, I just have to look at the son of God Jesus, who payed the ultimate price for all of us. And I find comfort in that, sometimes happiness even, but more than that, I SEE PURPOSE.

Time for an Overdue Honeymoon

We'll see how long the "vacations glow" will last. 

 David and I have been married for almost seven years now. When we exchanged vows, we promised to love each other for better or worse, in wealth and in poverty and in sickness and health... As many married people out there know all too well, It's much easier said than done though!

Life threw us a curve and gave us a punch below the belt. Having our Zachary and then loosing him is something that many marriages that go on for decades may never experience, but we as many others out there did, and the toll that something like this brings to a marriage is undeniable. I have faith in the fact that if this can make us stronger, it will equip us greatly to have an impact in others, to give hope and to spread the good news in the gospel.

Before we start to change the world though, we needed some readjustment ourselves, we were in desperate need of some "WE" time. My mother is a very wise woman with 40 plus years of marriage under her belt, she advised us to take a trip, somewhere new, some place that we didn't know anybody in order to just focus on each other, and in order of not hurting anybody's feelings because we didn't visit, or called or what have you. I'm a good girl (Now) and I did what my mommy told me. This trip was just about David and I, and so, by hubby's choice we ended up in this amazing place. Sedona, Arizona.

One of the too many breathtaking views!

This beautiful scenery helped us regroup, bond and heal.
We have shared many adventures together, and now we can add helicopter ride, balloon ride and jeep ride to the list. David got over his fear of heights and hoped in, and I guess that the beautiful scenarios helped him a whole lot. I was also pretty distracted with the new things to see, learn and touch so I was able to just let go for some time to time and that was very therapeutic.
Oh! The places you'll go! 

It helps a lot to go to a place where nobody knows you, it gives you a clean slate for you to go   out and show your face around town. Carefree. You just get to be whoever you want to be, and that is some breath of fresh air.

I realized once again what a great husband I have, it made me very grateful for days like this, when in the past,  I seriously questioned whether if we were ever going to be happy again.

This is how I ended up in a balloon,
Waay overdressed,
with this seriously handsome  guy. 
Thanks to my Zach, I have a much higher appreciation for days like this, because I don't take them for granted anymore, and I also grew appreciation for the days that you just wish that they were over SOON, because they give you hard earned character. We were able to go up in the sky, in a balloon and have a Dr. Seuss moment, and silly me: I thought that I was literally closer to my boy.

I like to imagine that he could see us better if we went up on that balloon, and I wanted to look good for my boy. That's why I ended up waaay overdressed, on wedges and skirt on a balloon. Something that clearly embarrassed David. But Oh, well... I just hope that my boy liked the way I looked, even if the rest of the world thinks that I'm crazy. Zach taught me very well in which situations I should worry and in which ones I just shouldn't. Well on this one, I seriously don't give a hoot.

When we got married, we didn't have a formal honeymoon. We actually had no honeymoon at all. God gave us this trip when we needed it the most though, and I am very grateful for that. Grateful for the time to reconnect, to relax, to heal, to do some soul searching and to do NOTHING at all, which was one of my favorite things. Now that we are more "rested" I guess that it's time to go on and change the world. One bite at a time.

At the Amara Resort & Spa, we sat down by the outdoor fireplace, and just talked.
How cool is that? 

Great company and great music. We became Anthony Mazzella's groupies.
Seriously, Google this guy! He is THAT good.

Saturday, May 12, 2012

Zach's tribute. All of me by Matt Hammitt.

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Now, What? Letter to Zach

Red roses: Your daddy and me. White rose: You.
Dear Zachary,

I didn't cry at your funeral a whole lot... that was surprising.
I was expecting to cry as if I was the main character of a Mexican soap opera. I guess that I still have a hard time believing what just happened.

This Sunday will be mothers day, and it would be exactly two months without you. You know me though, and you know that the grandiose things like that don't hit me as hard as the little random ones; now those are though.

It hurts me deeply when I have to tell the people at the daycares ( Yes, plural. I had you wait listed in at least tree, because your mom likes to have plan A, plan B and plan Z.) that we won't be needing their services now because you happen to be in the best daycare of the universe with Jesus and his legion of angels. It's hard to call the insurance companies, to cancel your follow up appointments and to call the medical supply company to pick up your equipment. I bet that I can speak for your daddy here, and tell you that it was extremely hard to take your car seat out...

I really got to love you for who you were and I learned to love all the things that made you our boy. With that said, it's still heartbreaking to go to the grocery store and see boys around your age blinking, breathing without help and even daring to move their wrists and feet as if there was nothing to it, even crying and trowing a tantrum! I can't help but stare almost in a freaky scary and rude way, and your daddy is afraid that I might just take one of those kiddos home when nobody is watching. Sometimes I wonder if someone would notice at all and if it would be illegal. Who knows.

I know that the moms that receive my stares have two reactions:

1. This woman is crazy, why is she staring at my child like that? She's freaking me out, I better get out of here.

2. They act very apologetic and  may think that I'm probably judging their mothering skills. They even say something along this lines: -I'm sorry that my baby is acting up, he skipped his nap.

The only thing that I get to tell (specially to mom #2) is: -He's a beautiful baby and he's just doing his job. All that with a fake smile included. If they just knew... the other day I found your bracelet of your last hospital admission buried in my purse, and I broke down. What am I supposed to do with that? What do I do now with all this diapers and baby gear, with all this love and specially with this aching empty arms?

Everyone now puts me in this early sainthood place like I'm supposed to do something meaningful, and it's so hard because sometimes I don't even want to leave my bed or the couch for that matter. I like to think that you are watching over us now, sometimes I see it in the other boys, in the grace and respect that so many people has shown us during this journey, and in all the awfully convenient parking spots that I happen to find in the most crowded places. I know that you watch over your daddy too, but Zach that's not how it was supposed to be! We were supposed to teach you stuff and to watch over you, not the other way around.

I miss you so much boy, I really do and I have no idea how I will move on.

Te extraño pulga con pancita, I miss you my Zachary Owen.

Tuesday, May 8, 2012

Zach's Story Part IV

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:

I will always miss you my angel. 

I know that I got to the hospital at 8:05, because I thought: -Crap! I’m late for his medicines and 8 o’ clock feeding. So I rushed to his room as fast as I could, so fast that one of the nurses stopped me and asked me if she could help me. –I’m going to see my son, he’s in room 240. She just quietly pointed the way, and I walked in the room where David was holding Zach in the recliner.
 -Your son is with Jesus now. He passed at 7:23.

 He was two months and two days old.

 That was the very first time that I held my baby totally cable and wire free, totally unplugged, completely healed. The grief is there, and it will always be, but I wouldn’t change this for the world. 

Zach opened a door for us that will never be closed. I know that I got dumped somewhere in Holland, in a very small town, so small that is not even in the map, and that is my biggest pride. I’m grateful for kids that blink, that cry, that throw a fit, that run and drive their parents crazy and I have special love for the ones that don’t, because I see my boy in them. Thanks to this I can connect with everybody in the deepest level of love, understanding and patience. No judging, no apologies, no “we have to fix him”. Just simple, pure, raw and most primitive form of love.

Everybody now says that I’m a great mom and that I should be proud. Honestly and full disclosure I couldn’t care less because I know the truth: I’m not a great mom, I’m just a copy cat. I just happened to goggle “how to be a great mom” and this blogs came along, I read them all and tried to imitate in at least at a 1% everything that these moms were doing for their kiddos. I just wanted to do just that for my Zach. Just know that I will continue following your kiddos struggles and accomplishments, I want to let everyone know that this amazing moms helped me and my family in a way that they cannot even imagine, just know that I would be forever grateful, and if you got to read this much THANK YOU from the bottom of my heart for getting to know my Zachary Owen.

Please know that my boy, now with Jesus will be watching over your kiddos to ensure that they become everything that they are set to be and do, and this applies for all the moms of special kids still in the trenches, for mommies grieving children that passed before they got to kindergarten, for mommies of miracles and angels diagnosed and undiagnosed. I still haven’t figured out what I will do now, what will happen, but just know that I will be there for your kids. I know that I have to do something, to share this journey and to keep reaching out.

In Dr. Seuss words:
And will you succeed? Yes! You will indeed!
(98 and ¾ percent guaranteed)
Kid, you will move mountains!
Be your name Buxbaum or Bray
or Zachary Owen Van Allen O’Shea,
You’re off to great places!
Today is your day! Your mountain is wainting…

So get on your way!

Zach's Story Part III

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:

Finally! a cute picture of my delicious boy without NICU background!!

Still, there was no diagnosis or prognosis so we were just given a blank card to decide when we wanted to take him home, if we even wanted that and we discussed, -gulp- do not resuscitate options.Our boy came home with a strange mix of palliative and home healthcare and a g-tube, oxygen tank and a pulse oximeter. I took him to his nursery, read to him “The places you’ll go” and everything felt just right. He was definitely ours. We became experts with his feedings, he would LOVE his bath and massages at night and we were a happy family. With lots of gear, but happy to have our boy with us and we even managed to sneak all his cables into our bed to cuddle with him and spoil him like nobody else’s business.I finally got some time to do my hair, took a long shower and even put some make up on, and as I did just that I finally looked at myself in the mirror and thought: -I got this, it’s tuff but I really believe that I can pull this off. Meanwhile, Zach’s monitor started to beep like crazy. First every half hour, then every 20 minutes, then every ten, then almost every five minutes and then we just rushed to the ER. My baby is not breathing! Is the only thing I managed to say as a bunch of doctors and nurses rushed in to assist Zach, and as I saw the ventilator approaching again, I had to throw away any shame or fear of what would they think; and I had to gather every possible inch of strength to tell that he had a DNR while he was in the NICU, and that we believed that at this point another intubation was not in his best interest. For a split second the nurses were shocked to say the least.I managed to explain Zachary’s big fat medical record in less than a minute and one of the doctors came in, stating what was my worst fear but I knew as painful as it was that it was the truth: He had an undiagnosed genetic syndrome, he was catatonic at that point and his brain was just not sending the signals to his body to perform basic life functions like breathing. They had to agree with me about the intubation, and the nurses were at that point hugging me, bagging him and crying with me, while my husband was rushing to the hospital, and I was signing the Do Not Resuscitate forms.Instead of admitting us to PICU, they gave us a room so we could have privacy. The plan was to stay in the hospital that night, and get his neurologist and a pediatrician for terminal patients the next morning to set up his now official palliative care at home. With all the madness I had forgotten his medicines and his feeding pump so I rushed home to gather what we needed and my hubby stayed with Zach.

Zach's Story part II

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:

Fast forward to January 11, 2012 the birth. After a really stressful pregnancy we decided to induce labor, I got my hospital bag ready, did my last updates on facebook, picked up my father from the airport and since we didn’t get a miraculous ultrasound where everything looked suddenly and inexplicably “normal”, we prayed REALLY hard for an orthopedic problem. Some prayers can sound really crazy as you all know. After an induction turned emergency c-section, Zach was born… and then there was silence, complete absolute silence. Holy crap! It’s the worst case scenario! That was the first thought that crossed my mind as I officially entered the Special Needs motherhood club that I had read so much about. Now not even my glass half full husband could deny it, we were Dutch citizens, I could see the sheer fear in his face, something that I had never seen in him before because you do not know, but just like all of your husbands, he also has superpowers. 

 Zach was immediately put on a ventilator and rushed to the NICU, where he stayed for 50 days. 50 Days that were filled with more tears and tests, including the so called and glorified Microarray that came back, along with many other tests “normal”. He had a surgery that included among many other procedures a g-tube placement and a muscle biopsy, and in the meantime we fell in love with our boy that despite all his challenges managed to be awfully cute and adorable and wrapped all the NICU staff around his crooked little finger.

Zach in NICU fighting the good fight

My blog quest continued as Zach was still undiagnosed, then the MRI results came back… NORMAL. But I knew my child, I found that very hard to believe; and I guess that the doctors agreed on that too, and they reviewed the MRI with a microscope. Both hemispheres of our Zach’s brain were slightly and symmetrically smaller than normal, so slightly that in any other baby that wouldn’t be a concern; but we were talking about Zach here and well... he didn’t cry or blink or swallowed or had any facial expression; he had contractures in several joints, hypotonia and there were doubts about his sight and hearing; meaning that there was a concern about his brain, a big concern, “fear for his life” concern. Suddenly we slipped from worst case scenario to really REALLY worst this only happens to other people scenario.

Continue to Part III

Tuesday, May 1, 2012

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. 

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