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I shared this on Instagram this past week…
What I wish people knew about having a child with special needs (things I’ve learned so far in 13 months)…
It can feel lonely. The life of doctor’s appointments and testing and therapies and meds and always having something you are concerned about can feel isolating. You see all these other children hitting milestones and excelling and parents talking about futures all while you are wondering if your child will ever walk or talk.
A lot of people are awkward. You get stares and glances but people often don’t engage. It’s more common that people look and then look away instead of coming up to you or saying something (or even just genuinely smiling). (It’s also very common that people will come up to us and gush about how cute Kierstyn is and not say one word about D — even if he’s right there.)
You are so proud of your child — and you wish people would take the time to really get to know them for who they are and not just see them for their diagnosis. You wish people would just come up and talk to you and interact with your child instead of avoiding you because it makes them uncomfortable.
You think a lot about the future. How will your child be treated in 8, 15, 25 years? Will they have friends? Will they be bullied or hurt? Will they ever get invited to things? Your heart breaks thinking of all they may not be able to do and how they might be treated.
There are days when it’s really hard. There are setbacks and discouragements. There are doctor’s visits and test results that are overwhelming and gut-punching.
But you wouldn’t trade any of it for the GIFT of being your child’s parent. You are fiercely and madly in love with them. You wish the whole world could know the joy that they bring and the blessing that they are. And you will shout from…
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