The doctor laid out the surgery and showed me pictures on his Ipad, while I fought back tears and tried to remember to breathe. I then walked out of the office and got my daughter and pasted a cheering expression on my face for her. In the car, I immediately called my husband and filled him in. But relating the story only makes it worse.
Now I am a few weeks out and the date has been set. I am trying to figure out how to manage this, with her in the hospital, with her not being able to walk or move herself for 6 weeks at least, with my other kids lives and needs. She is not the first child with CP to have surgery like this, but I can’t seem to find anyone who is enough like my daughter to get real info and real outcome from. All my friends have had similar surgeries, but in pieces and not all at once. The pain is supposed to be terrible, and being in a wheelchair with her legs straight out will be tough in our little house.
How do I get her to the bathroom? How do I get her out of bed? How do I get her to school and make that ok?
How do I get my other two back and forth to school and dance, and hockey, and basketball?
How do I make this ok for my daughter and keep her strong and happy?????
I met a lovely woman the other day at Target who told me about a therapy her daughter had been doing out of Canada. She has fended off surgery for years doing this herself. She sent me all of the info which I gobbled up and then set out for other opinions. At this point I have so many points of view, so many options, so many ideas, I have crippled my decision making. I don’t know what to do, or what is best? Am I a bad mom because I am letting her go through with this, is there some magic bullet I am missing that would be easier than cutting her open?
I just do not know which way to turn or who or what to listen to. I have never felt like this before, I always had a good path and a good idea. Now, not so much.
nonye nweke says
I just stumbled on your blog and read this. I do not know if you did the surgery for your angel, but if you have not, I may suggest that you try out that therapy in Canada if it’s name is ABR.
I started it last year December (i actually didn’t start seriously until January this year) but the changes I have seen in my daughter is enough for me to go to any extent to get fund funds for the follow up.
I blog at http://www.zimuzondu.wordpress.com