When People Tell Me How Beautiful My Life Is as a Special Needs Mom
I had this dream several months ago that I can’t stop thinking about. It really reflects how I feel about raising a child with Smith-Magenis syndrome (SMS).
SMS is a non-hereditary genetic disorder that is caused by a small missing piece (microdeletion) on chromosome 17. The syndrome is quite complex, and features associated with it include global developmental delay, varying degrees of cognitive impairment, sleep disorder, self-injury and/or aggression, mood changes and hyperactivity/impulsivity. Many SMS parents comment about their child’s incredible sense of humor and quick wit.
I think anyone raising a child with special needs or who has taken on the role of full-time caregiver could identify with this metaphor.
I will shorten it to the point, but basically I had to canoe down my huge lake every day to get through the gate out of my neighborhood. Everyone else could drive, but I had to canoe. And people would say to me, “Oh, that’s so nice! You’re getting such a great workout and what a view you have every day, so pretty!” And I would say:
Yes, you are right. It is very beautiful.
There are moments that are amazing.
It’s incredible exercise every day.
I get a perspective you just can’t get from sitting inside a car.
I feel very blessed that I have a canoe.
However, you still get to drive. I have to canoe every. Single. Day. It would be fine every once in a while. But, I do it every day.
Some days, my boat fills up with water.
Or I lose an oar.
Or my arms are too tired.
Or it’s raining.
No, it’s a hurricane.
Some days, I lose my boat and I’m swimming.
No, treading water.
Some days, I just flat-out don’t feel like canoeing, and I want to drive just like everyone else.
The truth is, as tired as I am most days, I love my boat. I really do. I love my perspective, and this little person who I share a life with who teaches me and grows me and stretches me even when — no, especially when — I don’t want to be stretched. Or taught. Or grown.
You don’t have to canoe alone. There is a world of support out there, even for a relatively unknown and rare disorder like SMS. Throw someone an oar and ask them to help you paddle. Connecting with other caregivers who are also in a canoe gives us courage to weather the storms. Connection keeps our heads above water and fuels us with the strength we need to keep paddling through the rapids of parenting.
Follow this journey on SMS Research Foundation.
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