Wednesday, January 16, 2013

Not There Yet

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.


  1. Aw, mama, I feel your pain. Do you think anybody is ever REALLY there? My son is maybe autistic (we don't know) and has a severe speech and language delay. I find myself in denial all the time regarding his prognosis. I recently wrote a post and the responses were along the lines of "oh you have such a good attitude!" But the truth is, I don't. Not really. I mean, I love my son just the way he is but I have not accepted that he's not typical. Not really.

    And so I wonder...maybe the parents in your SB group just feel like they SHOULD be there and so they act like it online? Maybe they type encouraging words about accepting God's will or whatever but still hit "publish" and then go into the bathroom for a good cry. I'm not familiar with the SB groups so I don't really know. I do know, though, that I never say how sad I really am on my blog. Mostly because I'm embarrassed to feel like that and I'm not ready to write it down that my son IS delayed. He is. It's not some temporary thing...

    Best thoughts to you and try to do something nice for yourself this weekend. Glad I visited (via Love that Max).

    1. Thanks for sharing, Kristi - you hit the nail on the head - it is embarrassing to admit that you're sad about your child. The rest of society seems to feel the exact opposite, and it's isolating at times.
      Of course there are many times that are awesome for him, but there are also a lot of times that SUCK, and at those times it's hard to be ok and accept it.
      I try very hard to stay positive on my blog (which is kind of against my nature) because I want it to be a celebration of Ian, but I felt like these feelings were eating away at me, so I let myself go there.
      Thanks again for visiting, and all the best to you and your son!

  2. My special needs daughter is 32. There are days I'm more accepting--but more days I still feel a sadness that she has to struggle and struggle and struggle when her peers don't. I feel jealousy (although I hate admitting either of these) that my daughter's life will be so much different than I planned/dreamed. I get it that you are not there yet. Maybe you won't ever be. We all mourn the loss of what we thought we were going to get/have. Sometimes I think I am getting closer to being there. Other times I realize I may never be. I feel your pain. Fortunately, my daughter is living independently. She married her long-time boyfriend last Oct. But they have issues. Raising a special needs child never ends. Thank you for being honest.

  3. It is like peeling an onion -- so many layers of shock, grief, and acceptence. And even when you get to the point of acceptence something can trip you up and you are back at the beginning.

    A few weeks ago I posted information that had been given to me about the 4 stages that us parents go through. It really helped me. I don't usually leave links on comments but I think this might help you.

    ~ Jamie ( hopping over from Love That Max)

    1. You are exactly right - thank you so much for stopping by!

      The link was great - spot on! I've felt exactly like all the stages at one time for's very true that they are circular, not linear. Thanks so much for sharing!