I’m 1 of 4 kids. A middle child, no less. I’ve got 3 little ones, all who are strong willed and 1 who battles a chronic illness. And to top it off, i work in customer service. So. I’ve basically got nerves of steel. But, and judge if you must; every time someone looks at me and says “I don’t know how you do it,” I cringe. Almost as much as when they look at my daughter and say “God only gives kids with special needs to special parents.” They mean we’ll, and I recognize that, but they’re clueless. And in caring for her, and my boys I have no patience left for it.
First of all, God didn’t give me a special needs child. He gave me 3 quick witted, sarcastic yet exceptionally loving children; 1 of whom happens to have special needs. Second, there’s nothing special about me. I’m like any other mom. But maybe a bit more frazzled. My cars a mess, I can never find the keys to it, and I’m late for everything. I step on Legos around the clock, and mumble daily “I can’t do this. Then, I fall into bed beside a tiny voice softly saying, “I love you,” and there I find the strength to get up and do it all over again.
Love. That’s the strength of just about every parent. And it empowers ordinary people to do extraordinary things. Like rock a sleepless newborn all night and still appreciate their sweet coo come morning, survive the terrible twos, and suffer through PTO meetings. It's a powerful thing, and I am thankful for it. But it doesn't make me super woman.
Raising kids, even under normal circumstances, is hard. It's exhausting and thankless. But it's what parents do. And when new variables get thrown in, like a swollen brain that regresses your child 10 years; the option doesn't present itself to say "pass." So, you buck up, and figure it out. Not because you’re specially equipped for the job but because there is no alternative. It's not seamless. There's no "ah ha" moment. And, unless I’ve missed something major God didn't give me a special road map for this journey. It's just where life landed. And since I love my girl, it works. I do my best to do right by her. I fight for her, just as I would my boys. I care for her, as any mama would. And I hope with all I have it's enough.
People probably say what they do because they're uncomfortable. They look at my situation and it scares them. Maybe they want to think it can't happen to them. That I don't know. But what I do know is it discounts my experience and demeans all 3 of my children. We are more than this illness and its impact. We're a family, united by love. And collectively we struggle. Some days more than others. But we figure it out. Day to day. Sometimes just minute by minute. Because there isn't an alternative. And we wouldn't trade it. Because we wouldn't trade each other. But that doesn't make it a natural process. In fact, it's hard. And wildly uncomfortable. And we stumble, a lot. And the added pressure of someone who thinks we automatically know how to navigate it intensifies that struggle. Think of it like this; if you can't stand to watch it, imagine living it. Realizing there never was a choice. And then think of what you’d want someone to say. Would it be “God planned for you to be knocked down and run over by a truck because he knew you’d recover” or “this sucks, how can I help you?”
And there may not be an answer to that question in that moment. Because navigating chronic illness is minute to minute. But trust me. The best thing you can do is fill the silence with compassion, not clichés.
Because in the midst of crisis it’s unfair and selfish to expect someone who's already struggling to be strong for you, too.