For years I looked at parents of kids with special needs with pity. I felt pain for them, I felt regret for them, and, regrettably, I felt shame for them. I misunderstood so much of what it means to be a parent of a child with special needs. Unbeknownst to me, the fierce love strain of a mother runs deeper than the shame. I never understood the smiles, the laughs, the ordinary-ness of life that I saw around me in families of people with special needs. I thought it was a facade and all I, mistakenly, understood was the weight of carrying around that act of happiness when surely they were experiencing nothing but crushing sadness at all times.
This side of things is better. You understand so much more the smiles and the giggles and the carrying on with everyday life. Partially because life carries on with or without us and you become accustomed to your new normal. But partially because of all the love you feel in spite of the special need. I love Johnny more than I could have ever imagined loving anyone. And he has opened my heart in such a way that, by extension, I love his daddy, his sisters, our family, and our friends all the more too. And I think it is ridiculously hard to explain to others everything that entails. There is so much we do that is hard. Johnny himself is the easiest child as far as day to day needs and personality. He, stereotypically, just goes with the flow. But as I have chronicled on here numerous times, having a kid with special needs means a lot of extra, and we aren't just talking chromosomes. Not only is it hard to keep track of all the specialists, all the appointments, and all the therapy sessions, but it's hard to work with Johnny. He tires easily, he sleeps a lot, and his stubborn streak is emerging with every passing day. With the girls and him and all the things I want to do, need to do, and feel compelled to do, I miss opportunities. There are times he doesn't get near as much work in as he needs, the girls too. And I totally forgive myself for it. But it weighs on my heart and my shoulders. THAT is what weighs on me. The quintessential mom burden of "am I doing enough". And with every worry, that deep rumble of love rises in my heart and says "you sure do love your son".
The milestones aren't being met. We work at them, but it isn't the big deal I thought it would be. We try, regroup, and try again, sometimes pushing, sometimes allowing for laziness, and sometimes collapsing into snuggles and kisses because that's just as important as crawling across the floor in a perfect four point crawl. Instead of being neurotic and obsessed with timelines and which month it should happen in, we are calm and focused on the tasks at hand. And when a milestone is met, it's so much sweeter than anticipated. The burden that I thought milestones would be is light, what weighs on me are the things I have to cast aside, will he be happy, will he be good, and will he be loved? And when I worry about those things too much, God stills my heart all the while that rumble returns, reminding me that, for now, our family and friend's love for Johnny is enough.
I never feel shame at what Johnny is or isn't. I am so proud to be his mommy. And even for our friends and family that love us and love him, I think it's hard for them to understand exactly how that feels. It's a different love and a different pride that is unique to being parent to a kid with special needs. I still don't know for what purpose we were chosen as his parents, but, unpredictably years ago, I am so happy and honored that it was and is our role. I bare no facade of happiness in being mom to a kid with special needs and I assure you that this is no act. The smiles, the laughs, and the wonderfully amazing ordinary-ness of life is as genuine and natural as it seems.