Staring at a blank page while the cursor blinks. I don’t
know if I can actually write these words. I do that, it makes everything more
of a reality. But I need to start to accept and deal with that reality somehow.
Writing, is one way that helps me. Here it goes……………………….my child, (eyes
squeezed shut)…..is dying.
I’m in no way saying this is happening NOW, but slowly it
will happen, and much sooner than either of us could have imagined. We still do
not have the real name for “Riley disease”, but we have had a very tough
conversation with both his neurologist and pulmonologist. 100% certainty, Riley
has a progressive neuro degenerative disease of his brain, that will ultimately
take his life. Obviously rare enough that no one, literally in the world, can
tell us the name for what is going on, or how things could play out exactly.
But with his several MRIs and their changes, and his clinical history, we have
a decent idea. He has some sort of white &/or gray matter disease in his
brain, that is chipping away at his brain cells and degrading who he is and how
he can do things.
Compare it to other very well-known progressive diseases
like MS or Parkinson’s. You have a pretty good idea with those about what will
happen to that person, and maybe an idea of how long they have left. We may not
know as well as that, but information that we do have gives us a decent idea
again. Riley will not make it another 10years. Progression in his images and
clinically, we could be looking at months to just a few years at most. I’m
going to lose my child. Writing it baffles me, how am I supposed to wrap my
head around this. I’ve always had this feeling in my gut and have had more
morbid thoughts than I’d like to admit. But to now make that feeling and
thoughts a reality. WTF. I would be swearing up a storm right now and bawling,
but I’m just numb.
The degrading cells in his brain over time, will start to
take away things that make Riley, Riley. His interactions, smiles, goofiness
could slowly start slipping away. His functions of other organ systems or
movement could start failing. Mainly, what we expect to probably see first just
from a clinical history, will be that his breathing system continues to go
downhill until it hits rock bottom. The next respiratory infection, could go
just as badly as this one did. He may not make it. We could be facing those
hard and firm quality of life decisions the next hospital trip. Or the next
time he gets sick, it just lowers his baseline even more than this trip has
done, and makes the next infection after what does him in. We just don’t know a
hard specific as to when, but know clinically and in our guts it will happen in
the near future.
Knowing that he will at some point lose everything that
makes him, him; knowing that he’s more than likely not going to enjoy having a
trach and permanent life support at home to give him even a few more months or
year, as other things degrade…do we hang on to him by a few strings just to
have him? Does that make sense for him? And that’s assuming he’d even have
enough time to get through surgery and the months or year it takes to get him
home after! What makes sense? What is the most worthwhile choice? What can we
do to make the rest of his life happy, joyful, and comfortable? Do we say
goodbye when he still is aware and smiles at us, but his breathing system has
failed beyond repair, or something else is pulling him away? Or do we keep him
hooked to machines to watch that happiness fade in front of us? Do we even
choose to bring him in to the hospital when we know that it would only be to
put him on life support and never come off? Nobody should ever have to deal
with these questions. Just all bullshit.
This may very well be the last time, that we get to bring
him home from the hospital (and I still hate that we’ve done that more than
just the one time that you’re supposed to). But we ARE bringing him home this
time. And just over a week ago, that was a very big question mark. For him to
be able to turn so quickly, this time in a hugely positive way, is such a
blessing. It allows us to be able to pick him up and give him a hug; which I
got to do for the first time today! It will allow us more time for snuggles and
kisses, more time to smile and laugh and make wonderful memories. We are given
some time to help him experience awesome things in his life that a child should
get to do or see! Whether we get days, weeks, months, hopefully a few years
(realistically don’t hold much hope on that one) …we have some more time
together as a family. To live life as best we can, make his life the best we
can, for as long as we can. Right now that’s all I can really ask for. Let the
hard shit sink in, rack those insanely stupid questions over in our heads,
while we continue to enjoy the smiles and the laughter. Finding that balance is
not easy by any means, but it almost comes naturally when you’re around him. I
can’t not smile with him near me, or tickle him to get giggles, or ask for a
kiss and he’ll oblige. I just wish that those things would never stop. How do
you ever say goodbye to your child?
No comments:
Post a Comment