I remember when I was much younger, my parents took us to Disneyland. The only thing I remember about Disneyland was being terrified the whole time we were there. I don't know who's idea it was to drag me on the Matterhorn, but there I was, screaming my guts out, crying, begging for it to stop and let me out! It was not a fond memory. I could never figure out why people would pay money to be scared to death and feel their stomach rise to the back of their throat. Why?
I wish I loved Roller coasters and other thrilling rides but I don't. I don't like those extreme feelings. I really don't like feeling at all. I think I have figured out that living with Shwachman Diamond Syndrome is pretty much like an afternoon on the Matterhorn. It can be terrifying and white knuckling at times. When the worst is over, it's still not over. You stand there, blanched, by the exit of the ride, head hanging in a garbage can wondering if you can keep it together or is this the moment when you toss your cookies! Your legs are shaking, and hands are numb and your head is spinning. Princesses and other fictitious characters wander around you and you are thinking, what the heck? It's kind of weird and disjointed, like some Disney nightmare only it's real.
I have had a little time to think about the situation with Spencer. It's not looking good, at least today's vantage point. As usual, the whole thing could turn around tomorrow or next week, even next month. I have to remember that things change quickly around here. He will have good days and bad days but to think that CMV is something he is going to have to manage for the rest of his life is a bit daunting.
I can't help but worry about Shelbie and Sam. I spend the better part of each day trying to keep them free from bacterial infections and viruses and we steer clear of sick people and I go through a lot of bleach and Lysol. Sam is currently very neutropenic with low white counts and Shelbie is dependent on Plasma to keep her healthy yet Spencer is now a walking virus. Ugh...how to keep everyone healthy, I have no clue anymore. Not when one person is a carrier. Maybe it's too late, I haven't had them tested yet.
Sigh...The doctor is hopeful that Spencer will fight this and it will go into dormancy soon and he will have a respite. I hope he's right, for Spencer's sake. If not, we may have to turn to IVIG to give him a boost. I freak out at that thought. That would make our monthly medical bill closer to $30,000 a month! Oh well, I'm sure God has a plan so as I said before....somehow, we will count this as joy! In the meantime, I will be trying to get my legs to stop shaking and pull my head out of the garbage can by the exit of the Matterhorn.