Through our various therapies, support groups, etc, we know several children with varying degrees of cerebral palsy. All an inspiration. However, we don't know, personally know, any adults with cerebral palsy. I often think about how Grace will be when she grows up and how I have no real personal idea...no one I can call and ask "so what is it like to be an adult with CP?".
About a month ago, me and the kids were at the library, Grace walking with her walker. As we were leaving a man walks up to us. From the his unusual gait, I assumed he had cerebral palsy.
Man: Hi! "Does she have cerebral palsy?" (Points at Grace)
Me: "Yes, she does." (Trying to guide her out the door and up the ramp)
Man: "She looks great! Don't let anyone ever tell you she can't do anything." (his speech affected by CP)
Me: "Thanks so much! We won't." (a little distracted by Sophia questioning his unusual speech...that is a discussion for later)
He then walks to his car parked next to ours in handicapped parking, gets in, and drives off. I was so touched that he would stop and talk with us. It felt kind of like I had gotten a pat on the back and an "everything will be okay".
If I didn't have my three with me (and again Sophia questions), I probably would have ran after him and asked if I could buy him a coffee and pick his brain. Hopefully next time I will be better prepared.
Yesterday while at the grocery store, looking for an open register, a woman waved me over saying "Ma'am, I can get you right here." She then turned to walk to the register. There it was...the unusual gait! Did she have cerebral palsy? Can I ask her about? Will she be offended? I stood there very conflicted about what to do as she ran my grocery items across the scanner. I didn't ask. I was too afraid. Of what...what would she say...would she want to talk with me about it? Will Grace get those questions...or just looks of sympathy or even disgust at times.
Maybe I'll get another chance. What should I do? What would you do?
Wednesday, August 10, 2011
Friday, August 5, 2011
Talkin' about Walkin'
Since we have been home from St. Louis, I have had so many questions from friends and family about Grace's mood, behavior, feelings, etc since the surgery. "What does she think about the surgery?" "Does she say her body feels different to her?" "Is she upset that she can't get around as well as she could before the surgery?" "How does she feel about what is happening?" etc, etc.
And the answers are...I don't know. She doesn't talk about any of this...at least with me. I have explained to her, both before and after the surgery, what was going to happen and why we were doing this. I have asked her many times about how she feels about having the surgery...does her body feel different, does she understand why she had the surgery, does she have any questionas, and on and on. No response, or at least no direct response to my questions. I'm not sure how to feels about what she has gone through because she has a great attitude, like she always did before, and works really hard during her physical therapy (as long as it is not me trying to get her to do it) and generally seems like her old self...just physically weaker. And physically she is doing much better than we had thought at only 1 1/2 weeks out of surgery.
I would be interested to know what types of interactions other moms of children with special needs have when there is some kind of physical change like we had. What am I supposed to think? She is not talking about walking.
And the answers are...I don't know. She doesn't talk about any of this...at least with me. I have explained to her, both before and after the surgery, what was going to happen and why we were doing this. I have asked her many times about how she feels about having the surgery...does her body feel different, does she understand why she had the surgery, does she have any questionas, and on and on. No response, or at least no direct response to my questions. I'm not sure how to feels about what she has gone through because she has a great attitude, like she always did before, and works really hard during her physical therapy (as long as it is not me trying to get her to do it) and generally seems like her old self...just physically weaker. And physically she is doing much better than we had thought at only 1 1/2 weeks out of surgery.
I would be interested to know what types of interactions other moms of children with special needs have when there is some kind of physical change like we had. What am I supposed to think? She is not talking about walking.
Monday, August 1, 2011
Regrets??
This morning, our first morning back from Grace's rhizotomy in St Louis, I immediately starting Grace's stretching and strengthening routine and I was immediately frustrated...she is so weak. Of course she is, you are probably thinking, she just had a major surgery!! Now, it's not that I'm typically an instant gratification kind of girl but when will the "miracles" we were promised begin (again no patience). Part of the problem is the "no regrets" policy I have tried to follow during this journey with three very premature babies.
Once the decision was made to continue with the surgery, I was 100% (okay really 99%) sure the SDR was the right thing to do, but there is always that .01% or 1% doubt factor...isn't there. My doubts were increased a small percentage about a month ago when we went for a routine check-up with our neurologist in Dallas. I had not told him we were considering the SDR until that visit. He is not a big fan of the selective dorsal rhizotomy. I don't believe he has seen that many patients who have had SDR (both before and after) but he didn't think that removing the spasticity would help Grace walk..."most CP kids need the spasticity to walk" was his response. I explained to him that we had been considering this procedure for about 3 years, had done our research, and had talked to several parents of children who had the rhizotomy. None of these parents have had any regrets. Dr. X then responded (and I paraphrase) "You will never hear a parent say they regret making such a big decision for their child. They don't ever want to feel they have done the wrong thing for them." I was speechless...but REALLY?! Do we become so brainwashed or narcissistic to think that every decision we make for our child is the right one? Do we really never make any mistakes with respects to our children?
Have we made a mistake? I don't think so at this point and can't really know until we are at least six months out. So, when you ask me at that point what will I say and will you believe me?
Once the decision was made to continue with the surgery, I was 100% (okay really 99%) sure the SDR was the right thing to do, but there is always that .01% or 1% doubt factor...isn't there. My doubts were increased a small percentage about a month ago when we went for a routine check-up with our neurologist in Dallas. I had not told him we were considering the SDR until that visit. He is not a big fan of the selective dorsal rhizotomy. I don't believe he has seen that many patients who have had SDR (both before and after) but he didn't think that removing the spasticity would help Grace walk..."most CP kids need the spasticity to walk" was his response. I explained to him that we had been considering this procedure for about 3 years, had done our research, and had talked to several parents of children who had the rhizotomy. None of these parents have had any regrets. Dr. X then responded (and I paraphrase) "You will never hear a parent say they regret making such a big decision for their child. They don't ever want to feel they have done the wrong thing for them." I was speechless...but REALLY?! Do we become so brainwashed or narcissistic to think that every decision we make for our child is the right one? Do we really never make any mistakes with respects to our children?
Have we made a mistake? I don't think so at this point and can't really know until we are at least six months out. So, when you ask me at that point what will I say and will you believe me?
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