As I packed for a weekend at the beach with Hannah and some friends I out-of-nowhere remembered something I read on a blog a while ago: the writer mom forgot her son had Down syndrome. I can’t say that has ever happened to me. Even for a short trip to the beach I’m reminded of the extra help and supervision my child will need. That extra chromosome plays a part in every activity every day, maybe not a leading role, but it’s always on my mind.
Every playdate requires extra planning. Childrens’ museums are usually stroller-free zones and my worst nightmare. I can’t assume Hannah will want to walk and I can’t carry her and the diaper bag all day. Parks and playgrounds are okay if they’re geared toward little kids and we’re the only ones there. At the last playground playdate Hannah was too nervous with the older kids running around so we ended up watching from the stroller.
There’s a reminder every time I look at the calendar. Another appointment to go to, another appointment to make. Hannah’s schedule is busier than ours and we often require extra help from the grandparents. I can’t imagine doing it all without them. We’re also lucky our employers are so understanding. I feel like I was barely at work last month because Hannah had so many 3 and 6 month follow ups.
It’s even tough to swap kid stories with friends and coworkers sometimes. I don’t know what it’s like to have a baby that doesn’t sleep all night. They don’t know what it’s like to force your baby to take a bottle in the middle of the night. I don’t know what it’s like to just watch a child develop on their own. They don’t know what it’s like to share small milestones with therapists and specialists. Yes, our kids all throw tantrums. Yes, our kids all have their quirks. Yes, our kids all develop on their on schedule. But you can’t understand what it’s like to be a special needs parent until you’re knee deep in it.
They’ll also never understand how amazing it is. How excruciatingly beautiful life is with Hannah. Every day she shows us what Down syndrome really is. It’s not just the doctors, the therapy, the delays, the work. It’s patience and perseverance. It’s singing and dancing in the bathtub, the car seat, the grocery store. It’s watching her reaction when we see one of her daycare friends at Target or a summer concert. It’s the twenty minutes she needs to say goodbye and give hugs before we can leave. It’s the pride and self-praise when she busts out a new skill or repeats a good behavior. It’s the magic in her eyes and the joy in every smile.