It’s probably a mistake to post a blog so soon after a highly stressful shower of Drew, but returning to the living room to watch Phineaus and Ferb just doesn’t seem to be the release I need. Give me an hour or two and I’ll be more positive, but right now I’m a “glass is half empty” girl.
Today was particularly hard and I don’t really have a reason why. Drew did average during physical therapy this morning, though his hamstring stretch seemed to be especially difficult for him to handle. Don, his physical therapist, really worked him hard today and between Drew’s hysterical cries and another young boy’s terror right next to him, I just couldn’t contain my sorrow that I felt for both of these poor boys in pain.
As a mother, you aren’t supposed to bring on pain to your child. You are supposed to be there to prevent pain and to make it feel better after the fact. But, to hold your boy down while somebody is causing him so much pain you can’t help but feel like a partner in his terror. What Drew must be thinking when he sees me participating in his pain rather than stopping it. I have to imagine that at some point Drew may resent me. And, my biggest fear is that a dream I had when he was a newborn of him as an adult who I had a strained relationship due to resentment of some sort (and, yes, I really did have this dream) was a premonition.
Drew has his good moments and, honestly, they account for most of his day. But, when he’s having a hard time, its intensity is twice that of his good moments. When he’s having a bad time, the urgency and desperation of the situation outweighs the content and comfort of a good time. Even Drew sometimes feels he’s maxed out. On several occasions, Drew has screamed in frustration, “I JUST CAN’T TAKE IT ANYMORE! I HATE THIS! I HATE THIS THING ON MY LEG!” I hate it too.
And, I used to think that the second surgery would be easier to anticipate because the unknown would then be known, I’d know what to expect. But, now that I know what to expect, I’m not sure I’m going to find the second surgery any easier. To know that we are going to repeat this process all over again, from scratch, is almost unbearable to think about for too long. And, I think that the next one will be harder because now that Drew will have one straight leg to stand on, that means they’ll want him to stand up, putting his weight on his left leg with the fixator. Considering placing a sock on his right foot causes him great pain, I don’t see it going very well.
To add on to my worry and anxiety, I’m very concerned about his heart. If you recall, it was noted that his heart condition had worsened prior to surgery and would require additional follow-up. Well, he is sweating excessively. So much so that I have to change his clothes, flip his pillow at night and the recliner is soaked. Meanwhile, I’m covered in a blanket curled up on the couch warming myself in the cold apartment. I called his cardiologist today and we are going to do another ultrasound next week. He mentioned that we are definitely looking at another heart surgery, and not 10 years from now, but in the next few years. He’s having his tonsils and adenoids taken out in August and now a future heart surgery. I just wonder where we are going to fit in all of these things in and whether Drew will ever get a break.
AND…I think one of his pins is infected. I take that back, I’m 99.9% sure it is. It’s oozing and it seems to cause him an inordinate amount of pain. *defeated sigh*
But, don’t worry about me. I’m holding it together pretty good and his shower is over and he’s content and comfortable once more on the couch. In fact, he’s begging me to return to the living room and excitedly awaiting our slumber party. He laid out a plan for us tonight: sleep on the couch in a sleeping bag and watch Spiderman in the dark with our flashlights. This was all his planning and I’m more than happy to oblige. It will take my mind off of today (well, that and the fully prepared frozen pina colada drink that I found in the frozen section of Wal-Mart the other day!)