The surgery is in three days. We went through the full day of pre-op last week which was enlightening in some ways and terrifying in others. I don't think I've ever seen the boy's widen more than when the associate surgeon gleefully mentioned that death was a possbility with any surgery. Really? In front of a nine year old who is already scared enough? I understand that they are required to go through all of the possible outcomes, etc. but I am beyond surprised that they don't consider that children don't need to hear these things. We went through much of the procedure and discussed pain management, getting him home, and learned that we will have a PT help train us with moving and transfering him while in casts.
In an effort to pack in as much fun into the last days of the fun part of summer he roller skated on Friday afternoon, spent Saturday doing his favorite morning routine (Trader Joe's with Grandma and then takign Grandma out to lunch), and then we all went for a family swimming and bbq party with two of his best friends. Sunday he surfed! It was a beautiful morning at the beach and he had cheering from Grandma and Ronnie, and Chelsea & Will...(and mom & dad)...He was nervous about it at first, maybe because he hasn't surfed since last August, but he got some great rides and afterwards he seemed thrilled that he got to do it. Sometimes the boy doesn't realize he's had a lot of fun until well after the event? It's a funny phenomen about him but it happens quite a bit when he does something exciting...Disneyland (always more fun when he thinks about it afterwards), surfing, playing with dolphins...And the day ended with a major haircut (short and a little spikey!) and some relaxing time with mom and dad...We all had a little too much sun, but definitely a lot of fun.
Now I just wish it were already next Monday. The boy would be home and on the road to recovery...
Monday, July 18, 2011
Monday, July 11, 2011
My boy...
The boy is scheduled to have surgery on his hips and leg muscles next week. Of course this has my mind swimming with a thousand what ifs and hows and everything in between. We've gone through the mini version of this surgery before. When he was five and half he had three sets of leg muscles released, or lengthened. They cut through the skin into the muscle to allow it to reset in a new longer, stretched fashion to faciliate more flexibility and ability in the legs. It worked, and it helped him for a time. But children have a funny thing they do, grow...and as he's grown, one of his hips has displaced, and the muscles have become tighter, partially the cause of the hip displacing. All par for the course when your darling boy has cerebral palsy. Small bumps in the road that hopefully lead to better things for the boy. Following a long surgery, he'll be in lower body casts for six weeks. Six long weeks. Six weeks of what I can only currently approach with dreaded uncertainty. How will we move him? (The casts are full leg and will most likely have a bar of some sort at the ankles setting his legs apart to some degree)...How will we keep him comfortable? Entertained? Painfree? How will we change him? How will we keep him sane and content? How will we manage to remain sane and content?
As the parent, you feel guilt, fear, anger, protective, sad, and did I mention, fear? It's hard to knowingly put your beloved child into a situation where you know they will be frightened, in pain, uncomfortable, distressed, and mad. Mad because of the emotional distress you are putting them through. Mad because of the horrible casts! Mad because of missing the end of summer school! Mad because of missing the end of Day of Play summer camp! Mad because he won't get to swim for a couple of months! Mad because he won't get to surf! Mad because we aren't doing our usual week at the beach house with Grandma and his cousins! Mad! Mad! Mad! And who can blame him?
Getting through the hospital phase is the worst part. Hospitals may be the best place to perform surgery but they are absolutely the worse place to heal. Even a day out, they're horrible. Especially if you have a child who is atypical. Especially if the surgery is fairly uncommon to most children (even if it's common to children who have CP). Especially if you believe the nurses and doctors are there to answer your questions and to help you navigate your newly casted child. Not going to happen. But when you get home, and you put all of those years of crazy, Maguyver-esque experiences you have had in adapting your life and home to your child's specific needs and preferences, the real healing can begin. It's just that you can't know what you need until you need it and you can't fully prepare for exactly how you'll navigate the lower body casts or how you'll make your child comfortable at night, and entertained and happy sitting around in giant casts for six long weeks while he's missing out on his summer fun.
And that's where I am right now. Wondering how to do it all. Tomorrow we have a pre-op appointment at the hospital which I will attend armed with a list of questions and concerns. Hopefully it will help me move closer to feeling like I can prepare for this. Nothing but seeing him post-surgery will prepare me for the surgery. I don't like the thought of him going under, and I don't like hospitals...I'll breathe when he wakes from the surgery and can rest his hand in mine. Until then, I'm just collecting information that will help me do whatever I have to do to make this all okay for him, because that's the only that matters. The boy...The boy I love beyond my imagination...
My boy.
As the parent, you feel guilt, fear, anger, protective, sad, and did I mention, fear? It's hard to knowingly put your beloved child into a situation where you know they will be frightened, in pain, uncomfortable, distressed, and mad. Mad because of the emotional distress you are putting them through. Mad because of the horrible casts! Mad because of missing the end of summer school! Mad because of missing the end of Day of Play summer camp! Mad because he won't get to swim for a couple of months! Mad because he won't get to surf! Mad because we aren't doing our usual week at the beach house with Grandma and his cousins! Mad! Mad! Mad! And who can blame him?
Getting through the hospital phase is the worst part. Hospitals may be the best place to perform surgery but they are absolutely the worse place to heal. Even a day out, they're horrible. Especially if you have a child who is atypical. Especially if the surgery is fairly uncommon to most children (even if it's common to children who have CP). Especially if you believe the nurses and doctors are there to answer your questions and to help you navigate your newly casted child. Not going to happen. But when you get home, and you put all of those years of crazy, Maguyver-esque experiences you have had in adapting your life and home to your child's specific needs and preferences, the real healing can begin. It's just that you can't know what you need until you need it and you can't fully prepare for exactly how you'll navigate the lower body casts or how you'll make your child comfortable at night, and entertained and happy sitting around in giant casts for six long weeks while he's missing out on his summer fun.
And that's where I am right now. Wondering how to do it all. Tomorrow we have a pre-op appointment at the hospital which I will attend armed with a list of questions and concerns. Hopefully it will help me move closer to feeling like I can prepare for this. Nothing but seeing him post-surgery will prepare me for the surgery. I don't like the thought of him going under, and I don't like hospitals...I'll breathe when he wakes from the surgery and can rest his hand in mine. Until then, I'm just collecting information that will help me do whatever I have to do to make this all okay for him, because that's the only that matters. The boy...The boy I love beyond my imagination...
My boy.
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