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Overcoming the Pain of Milestones as a Special-Needs Parent

As a parent, we are all aware of the charts they use in the doctor’s offices to gather facts and objective data about our children. There is a head growth chart, height growth chart, weight growth chart, and then there is the dreaded developmental milestone chart. My daughter who has an STXBP1 gene mutation is the baby of our family. I don’t remember cringing when those charts came out with my first two children. I saw them as a way to monitor progress. I felt certain they would meet all the points they should and even if they didn’t, that they would soon enough.

These charts came to mean something very different to me when my daughter was born. They were now a way to monitor failure and points my daughter had not met and may never meet. They were a reminder to me of all the things she wasn’t and oftentimes left me in tears and feeling so discouraged and even depressed. I got to the point where I just convinced myself none of these things were going to happen. That way, when they didn’t, it wouldn’t hurt as much.

Much more so than the charts, I found birthdays to be absolutely devastating for me. It was an in-the-face milestone jammed full of the many things my child should be doing and was not. It was also a time to grieve the realization that the baby I had lovingly grown for 9 months was not the baby and future little girl I had envisioned. With these thoughts came a ton of guilt. Guilt over not being able to just celebrate her birthday and another year with her, guilt that I could not accept what was and be grateful for what I had been given.

I’m not sure I can say for sure what caused a change in my thoughts and feelings toward milestones. I do remember it was when Emma received her diagnosis at the age of five. It could have been the passage of time healing the wounds, maybe it was the need to find a way to enjoy my daughter and who she was, or perhaps it was the diagnosis presenting yet another trial for her. But suddenly, I saw her for the person she was, apart from my daughter, and the lost hopes and dreams I had for her at one time.

I saw a little girl who had to work hard at everything, even the simplest of things, and how she met each challenge with a smile and a motivation to “figure it out this time”. It took her four years to learn how to sit by herself, four years! She didn’t give up and when she finally got it, she was so excited and proud of herself. I don’t think I have ever stuck with anything for that long without seeing noticeable progress. Now when I look at her, I am inspired. I feel so blessed to be able to watch her and learn from her. My worst day could not amount to what she faces on a daily basis and there is no chart that could even come close to accurately measuring that. There will always be small moments of grief and that is okay, but there are many more moments of gratitude and my heart swelling with pride.

– Jennifer

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