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.

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.

Continue to part IV (final) 

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

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.