Precious

Hi, I’m Beth and I’m thrilled to be posting here on 5 Minutes for Special Needs. I’ve been reading all the posts for the last several years.

I have found some wonderful information here and have sometimes passed it along to others, and I can sometimes relate to the authors myself, but I haven’t found many posters that have a child with no diagnosis or only a mild to moderate delay. My daughter doesn’t have a recognizable syndrome like Autism or Down’s Syndrome, even though she shares some characteristics with children with Down’s.

My daughter falls into the ‘other’ category of special needs. We don’t have a diagnosis for her other than she has a global development delay, low muscle tone, and we don’t know why. She talks and goes the bathroom by herself, but she is nowhere near typical. Sometimes I feel like we straddle the line between disabled and not. Depending on the activity, my daughter can sometimes go with the neurotypical kids. She’s participating in regular swimming lessons, but is in special needs gymnastics. When does she need help and how much? It’s a balancing act.

Precious

Every Sunday at 4:00 EST, you’ll find my posts here about how my husband and I cope with having a child with special needs, how we balance the needs to our child with special needs with the other children, advocacy, what interventions our daughter is getting and how they’re working, among other things. You may even find my other two kids sneaking into my posts from time to time. I’d love to hear you comments, and I may even be asking you for advice from time to time.

I wish I had enough space here to describe my daughter in detail, tell you the whole history and even describe my pregnancy and her birth story, but those will have to wait for another day. I’ll give you the executive summary.

My daughter, Precious is turning 5 this week. Since she was three days old, the doctors told us something was wrong with her. They initially suspected Muscular Dystophry or Prader Willi. Even though I’d had a high risk pregnancy, the constant reassurance of the ob/gyn had me believing that everything was going to be fine. I mourn the loss of that naive person who believed that nothing bad could happen to her family. I feel a deep sadness when I look at photos of myself when I was pregnant with Precious, oblivious that anything was wrong.

Although I love my daughter to pieces, I didn’t sign up to be the mom of special needs’ child. It has been the most difficult challenge my husband and I have ever faced.

Do you ever think about how naive you were before you had a child with special needs? Do you ever feel a sense of grief?

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