Posted Oct 4, 2010 10:48am
Okay, if that all sounds too philosophical, it is perhaps because I have been adjusting to the role of "Caretaker", and its 24/7 demands slowly, but by default, surely. And being home virtually all of the time now affords me the chance on multiple occasions throughout the day to just think. And my brain is either my best friend or my worst enemy.
On the UP side: Phil is doing utterly fantastic. He is completely off of his pain meds and has been for a number of days now. He has been up in his chair now for up to 7 hours (which was a stretch, but he did it, and not under duress like some days...). His back is bandage free, and he has enjoyed a few showers. He has surprised me with supreme healing abilities, and seemed a bit deflated when I told him his scar might not look as "cool" as the Frankenstein one fresh out of surgery! :-) I assured him this in no way subtracted from or diminished his Herculean feat of enduring this surgery.
Despite the therapy debacle, the school has totally stepped up to the plate with me, and until Phil is up to heading back to school, we have either PT, OT or a tutor coming every day of the week. Add THAT to the "normal" score card - now we have a schedule of sorts, and that means no lounging in bed until 11:00 for Phil! Conversely, no lounging in bed for us, either, which means no staying up until midnight or later, tucking in Winnie the Pooh just so, or trying to finish the dishes up. Nope - Mark and I have voted on establishing an official "bedtime". Lol...we'll see how well THAT works!
Still on the up side, the weather is divine, we all love fall, here, and the other kids have chipped in to help keep our ship afloat. Davita is getting up an hour early each day to clean up any kitchen mess that did not get cleaned up in the evening. Giovanni, being our resident Vidiot, is a great help in hanging out with Phil playing games and keeping him occupied while I tend to tasks that require more than 10 minutes of interrupted attention, and pretty much doing any other task we ask him to. Rachel has become our retail gal, filling in at the store to keep that CPR up. Josiah is our designated Go-fer and shopper - helps that he works at the grocery store. And they have all demonstrated a care and affection for their brother, which is all any mother could ask to see.
Now, I was about to write, "On the DOWN side..." and I realize I need to qualify that. Because by "down", I decidedly do not mean "bad", or "negative". No...think of it more as a roller coaster. The down side is the thrill - the fright - the adrenaline - the scream - Whooooosh!!!! For someone who has not been on a roller coaster since our Make-a-Wish trip (in, what? 2002?) you need to know that I am no roller coaster junkie, like my children are. There was a day – but the last coaster ride I took found me completely disheveled, declaring that, “I am too old for this shit!” I recall thinking that the ride felt for all the world like an organized plane crash. All the moves, with no chance of death or injury. I no longer have those thrill issues.
Having said that, the downs have been working with “The System” – or lack thereof. The therapy issue is STILL up in the air, and phone calls will be made this week to find out just whose phone I’m going to blow up. Phil REALLY needs to learn some new methods of dealing, here, and it needs to be dealt with now. Again, major kudos to the school for helping us out in that department! Another adrenaline rush I could have done without was dealing with Phil’s FORMER wheelchair company. Without aggravating you with the details, Phil’s chair died on June 24. They provided no loaner. We spent the entirety of our savings on a replacement chair for him. They have had NO contact with me since then, despite numerous messages left for them on the phones they never personally answer. After being notified that they have been replaced, the finally found the balls to call me and tell me they are coming to fix his chair – on October 5th. Imagine going without your legs that long. And there is the tiny matter of fact that his old chair is now completely obsolete. Our new provider is coming out on the 12th, so we shall see how that little saga continues to unfold.
I have also determined that despite being utterly, totally and perfectly worthless to date, I will, in fact, give the MDA one more chance to redeem themselves as anything more than a place to waste money. Won’t get too into that, but all that money in the fireman’s boot is simply going to some 6-digit earning researcher somewhere, and not to the poster children who pulled at your heartstrings on the brochures and telethons. So, next time you see the appeals and desire to donate, give me a call. I can tell you where to send that check, where some boy might actually have an improved quality of life as the result of your gift, rather than a meaningless “hope” for a cure that is a LONG way off. (Don’t start with me on this one – you will not win.)
Well, the PT is coming today, and the wake-up process needs to begin. I’ll post again soon – frightening how fast time is flying! But, what coaster ride doesn’t fly by…
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