Today was a very hard day.
Kaden didn’t do well. The steps taken to help him mean he went backwards instead of making the progress we all had been praying he was making.
He has a virus – the HHV6 (Human Herpes Virus 6) that isn’t the herpes we all think of. It’s a form of roseola, in fact almost everyone on earth has been exposed to it. Most children who show symptoms get a fever, flushed cheeks, maybe a cold. (Forgive me if someone who knows much more medical info/lingo reads this and has a head explosion over my terms – I’m trying to explain it how I understand it.)
There are 6 documented cases of HHV6 that have attacked the heart and caused cardiomyopathy. Ever. 6. Each in children older than Kaden. He is currently the youngest known child ever to have this level of it in his system. Each of those children died. There is no known cure. No understanding of where this came from, or reason why it hit him the way it did. He isn’t even able to be a candidate for a heart transplant until they can find out if another heart would be attacked the same way. He isn’t able to be transported anywhere – I know several people have wondered that. He would die in the process as he almost did just getting here.
We are desperate.
I feel so betrayed. So angry still. Each day is a huge wave of emotions. Yesterday we left laughing and talking about his bath and bottle, today we left in tears. Options are limited for him. So is time. He isn’t dying but he isn’t doing well.
I feel like the more I pray or ask everyone to, the worse this gets. Honestly, there is a part of me that is terrified to tell God what we all want because I’m at the point where I’m wondering why we’re given the opposite. I don’t understand His plan in all this, and right now? I don’t care. I want my baby. I want to bring him home and be tired and love on him. I just don’t understand this. I might if it was something like the twins loss – then it would make a little more sense? But this is SO random and strange. What is the point in it all? Why can’t I just have my son?
Once again, so many of my friends get to bring their babies home and we didn’t. Once again we have to deal with this. Once again I’m looking at this grief process wondering if I can do this again. We’ll be asked to make a decision about him if he worsens and can’t be listed for a transplant. How do you do that? How do you decide this is his time?
We fought so hard with Preston and Julian and never had to make that choice. It just happened. Oh God, I don’t think I can say those words. I pray with every fiber of my being that it will never come to that.
Where is the hope for him? My miracle? Why can’t he just be healed? Why is God allowing this all to happen to my tiny son? What is the point in allowing him to suffer like this as we all stand and watch helplessly, to give us a day of rejoicing only to rip it away and smash it to pieces in an instant? How long can my faith hold onto a Savior that lets us go through this a second time? I am furious, my mind races of a thousand ways to bribe Him into doing my will, on my timeline. I would give anything for Kaden to get well. To get that miracle.
Why isn’t He listening to me? And if He is, because that’s what everyone is going to say, then what is this? What is the point of this hell on earth? Why won’t He listen to the cries of my heart and heal my son?