February 26, 2017 by kruckr
On Monday, July 1, 2013 at 11:15 p.m. my life forever changed. On Friday, Feb. 24 at approximately 12:30 a.m. my life forever changed. For, we now know that this is the date we lost our sweet boy. We will never understand what caused the seizure that took his life, or why it had to happen at all. As I write these words, I feel completely empty. There is nothing that will assuage the pain and heartbreak we feel.
Because the end is part of his story, I will tell it to the best of my abilities, but I wanted you all to know what you’re reading from the beginning.
I had just gone to sleep, after a long day sitting in the ER with Dan and Henry for another seizure. The longest he had to date, and the first one where we had to give Diastat. They did some blood work, observed him and after several hours sent us home with some minor medicine changes. He was exhausted when we got home. We let him sleep.
He woke around 7 p.m., ate some dinner and we played for a while. Dan gave him a bath and we played some more. I was so tired, I had to go lie down.
If I had only known.
After midnight, I heard Dan screaming his name … then my name. I called 911. We started CPR and about eight minutes later rescue arrived and swept us off to the closest ER. They continued CPR there and poked and prodded my poor boy something fierce trying to get a vein. It took round after round of medicine and continued compressions to get his heart beating on its own … nearly an hour had passed.
The mobile ICU arrived and delivered him to Wolfson’s Children’s around 3 a.m. He was still unresponsive and his stats were off the charts. We waited and prayed, waited and prayed. They did more tests, waited and prayed. They started using words like “no sign of brain activity” we waited and prayed. “Pupils fixed and dialated,” fierce praying … “Brain death” … agonizing, begging and pleading for the Lord to intervene.
At approximately 6:05 p.m. on Saturday, Feb. 25th, my sweet sweet boy, my Henry, was declared dead. Of course we now know that his life ended, there on the floor of his bedroom the day before. The medicines and machines kept his poor, broken body going, but his spirit had already gone.
Nothing can prepare a parent to lose a child. No matter how many stories you hear. No matter what other families have to endure. You always believe your child will come back. There are no words to express what we feel right now. There are also no guidelines for what to do after. Luckily we have a team of people on our side guiding us through these impossible decisions.
We have decided, that what’s left of Henry’s life will not go in vain. His body will help others heal theirs and in turn, his life will go on … in a way. The next 12-24 hours will be spent preparing him for that process. We will say our final goodbyes when the transplant team arrives.
I have no plans for how our lives will proceed without him, how I will survive without the feelings of his little hands on my face, the feeling of his body against mine, the sound of his laughs, even his whines. I want to bottle it all up, but it was part of him and it left with him. Pictures and videos will have to suffice … and they’re not enough.
I know Henry is walking hand-in-hand with Grandma Bev, Papa Bob, his Papa he never met, Tobin, Lexi, and all the 1p36 angels in Heaven. I will try to find comfort in that in the days, months and years to come. I will try to hold onto my faith that we will see each other again one day when we meet on streets of gold. I do not know how I will get by until then. And I’m angry that Ella will never really get to know her big brother.
For everyone who has prayed, brought food, ran errands, called, texted, messaged, and done other things I may not even be aware of … thank you! Especially to his amazing Godparents, who have seen him and us through and taken care of my girl, so we can focus on Henry. If this process has shown me nothing else, it’s shown me the goodness in people’s hearts and it reminded me just how many people my little man has affected. I don’t think anyone who ever met him, wasn’t affected by him. It just wasn’t possible. His light was that bright.
Henry Robert Kruck
2013 – 2017