Wednesday, September 19, 2012

even if the healing doesn't come...


After birthing a beautifully formed and functioning baby girl we felt we had encountered a miracle.  We felt blessed beyond words to take our big girl home with no medical intervention needed.   It took us around a year to realize something wasn't exactly right because even all the doctors were saying she seemed fine.  Maybe a bit lazy but nothing to worry about.  At ten months we finally pushed it and asked to see a developmental doctor because she was barely holding her head up let alone rolling over.

Her blood work after birth showed only a one percentage mosaicism and she had no physical features that were typical of chromosome 18q- kids so they told us they thought she'd be mildly affected and not to worry about it too much.  We did see a geneticist for a follow up within a few months, but after feeling like my child was treated like a lab rat as every feature was scrutinized for malformations, we decided we didn't need there help and we certainly weren't getting any from them. 

We quickly went from "She's fine" to "hit it hard" therapy mode to "catch her up".  We did as much therapy as Abby would tolerate with a professional and continuously at home, but she only made small improvements.  She cried more than I thought I could handle because she didn't have the muscle to back up all the exercises they wanted her to do, but with some coaching they convinced us we were doing what was best for her.  We found ways to divert her attention while she worked to keep her occupied rather than focused on the exercises.  We saw medical specialists and alternative therapists.  As long as she wasn't miserable we would try anything to help fix her.  It was hard to believe that we sat in tears holding this perfect little girl one moment and then watched her fall further and further behind as the years passed by.

Somewhere around five or six (I don't really remember) we stopped all the therapies as we drove thirty minutes away three times a week but saw little or no improvements, and in the quiet places inside of me I knew the healing wasn't going to come.  We decided to make Abby a part of our home the best we could.  We'd  use equipment in our home to help her, but therapy needed to be jumping on the trampoline and crawling us the stairs.  She would use her walker, but it would be in the hallways of the mall with her sister cheering her on rather than a hospital or clinic with a therapist.

Moving back to Minnesota to have family around was beautiful for many reasons practically, but spiritually and emotionally there was a lot of healing that needed to take place.  I needed to stop trying to fix her and start being mom with the child I had rather than the child I was trying to make her into being.  We needed to find that place of sanity between pushing her to be what she could be and turning our lives inside out and upside down  for miniscule advances while missing out on any family time.  We tried to find this sense of family while Andy's job carried him across the country for weeks on end at times.  I'd find my rhythm with the girls and I, but had to find another when Daddy returned and wasn't so into our routine.

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