For a few months now, I've been kind of avoiding the spina bifida online groups that I used to frequent. It wasn't a conscious decision, just something that happened. When I first discovered them, I couldn't get enough - I asked tons of questions, read through hundreds of others' questions and responses, and sometimes even chimed in with my two cents. I felt a sense of community - these parents are going through what my family is going through. These parents "get it" when I bring up hydrocephalus, or chiari, or shunts. They understand cathing, urodynamics, HKAFOs, and IEPs. I would read the threads for hours at night after the kids had gone to bed - gobbling up all the information I could from other parents who'd been where we are now. Then, I stopped.
I never really gave a lot of thought as to why I stopped visiting and participating in the group, but I was talking with someone about the online support groups recently, and that conversation gave me the opportunity to really think about everything. What it came down to is something I don't like to admit - what it came down to is that the other parents in the group seemed to be in a place of acceptance about their child's spina bifida, and I wasn't there yet.
I wasn't there yet as far as accepting and being "OK" with my child having spina bifida, and I'm still not there. Five years into this ride, (Ian was diagnosed at 20 weeks in utero in January 2008) I'm still mad and sad and worried about my child having spina bifida, and I just can't seem to relate to other parents who are so accepting of it. I don't believe God gives special children to special parents. I don't believe God only gives you what you can handle. I don't believe God is testing me. I don't believe God has anything to do with it, whatsoever. I have nothing against those who do believe those things - I just can't relate to that. I still need to work on accepting Ian's spina bifida on my own terms, and I'm not there yet.
If I had a question I needed answered, I wouldn't hesitate to go to the group and ask - it has been very helpful to me in that regard - I just realized that I cannot use the group as my main source of support. I'm not there yet. I'm glad other parents who are dealing with their child having spina bifida can accept it and make peace with it - I'm not there yet. I hope to be there someday, but I'm not there yet.