Tomorrow is World Down Syndrome Day. And I saw that another mom wrote a blog that listed what she has learned since having a daughter with Down syndrome. I’ll be honest, I didn’t read it. Partly because I thought, “What a good idea. Maybe I’ll do the same.” And I didn’t want her list to change mine.
Because, guys, I’ve learned a lot. And it may not be what you expect. Some people told me I’d learn about living life at a slower pace. Some people said I’d learn to appreciate the little things. Those sounded nice, right? But it’s not exactly what I learned. So here goes.
I’ve learned that despite people’s best intentions, their most enlightened ideals, or their most progressive understanding of human rights, that they will inevitably have an incredibly difficult time looking past my daughter’s disability and seeing her. And even as her mother, I have a hard time seeing past it too. Life is strange that way. We seem programmed to categorize and differentiate. To see how another person is different and not the same.
I’ve learned so much about how I see the world. The good and the bad. I’ve learned that prejudices run deep and overcoming them is difficult, but possible, a daily process, and absolutely necessary.
We celebrate the little victories. That is certain. But I’ve learned that there are far more victories than I’d expected. I’ve learned that the biggest barrier to her victories is not Down syndrome, but my own low expectations. I’ve learned when to push and when to back off. I’ve learned that she will get there at her own pace, but that doesn’t mean I don’t encourage, cheer, and push.
Because she is soaking it all in. She knows what’s expected and what she needs to do. And instead of saying, “I wish you would do this,” I say, “I know you can do this.” Because she can. And she will.
I’ve learned that she has an incredible cheering section and a great team. But that doesn’t mean I don’t ask questions. I’ve learned that I’m her advocate. I’ve learned that advocacy is more than speaking. It’s more than educating. It’s fighting for what my daughter needs. I’ve learned that when it comes to my daughter, quitting is not an option for me. I think all of us moms find that mama bear inside. And we don’t know how strong and ferocious we can be until our child isn’t getting what they need.
I’ve learned that for a painfully awkward and introverted person inside and sometimes out, that when it comes to my kid, I will stand my ground, speak with conviction, and not back down.
But in the same respect, I’ve learned I can’t do it all. I’ve learned that caregiver depression is a real thing. I’ve learned that while fighting for what my daughter needs, I have to also fight for my own needs. I’ve learned that the days are long the road stretches to the horizon, and that I have to take care of myself and her. That we are in this together – Mia, Fynn, and me. And that I’m no good to them burnt out. That recharging is not a luxury. It’s a necessity. Because there will always be one more battle. One more milestone. One more sleepless night.
I’ve learned that sometimes, I have to ask for help.
I have learned that there will be comparisons. I have learned that friends look at Down syndrome and think, “But her problems are so much bigger.” And to all of my friends that say that or tell me their problems with a caveat, please stop. I don’t think of it that way. Life is hard, my friends. It is. Everyone has their stuff. Their thing. And you’d be surprised at what my “thing” is. It’s not Down syndrome.
Life is hard. There’s no way around it. I’ve learned that.
I’ve learned that life is better with Mia. Over the years, people have told me that they couldn’t do it. That I’m so strong.
I’m not strong. I didn’t know that I could do it. I still don’t know all the time. I still have my doubts that I’m strong enough.
This quote always rings true to me: “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage,” Lao Tzu.
Because on those days that I feel tired and burnt out and exhausted, I just remember, it’s Mia. It’s not Down syndrome. It’s not disability. It’s Mia and we belong to each other. That this is how it was supposed to be and it’s just us.
And loving her is the easiest thing I’ve ever done in my life.
I can’t wait for more lessons.