I awaken to the sounds of purposeful thumping down the stairs and loud “AAAWK”s.
I overslept again. It’s easy to do. Once Ruby and my 2yo are in bed, it’s a quiet couple of hours of almost uninterrupted painting, chatting with my older children,or sewing. My eyes tend to wane before my will does, but I stay up even longer to hold a flashlight, reading into the night.
But she’s up now and the games have begun. She will be on the run until she’s in bed once again, and we will all be chasing her in the meantime. Sometimes she will need to be held tightly, against her will, because she wants to hit other people out of her own frustration. Sometimes she will decide the milk isn’t good and deliberately pour it onto the floor or throw the food she doesn’t want. She will scream when you say no to the knives, no to climbing up the gate, just no.
I will myself to get up. Ruby is yelling, waking the others. In my head, I hear how people with Down syndrome are so happy all the time.
Maybe in Ruby’s own mind, when she has access to knives and puts mud in her sister’s hair, maybe she IS happy. But this idea that just because you have an extra chromosome you’ve also inherited the happy gene is either a misstatement at best or an outright lie. It doesn’t do anybody any favors that all-out-cheeriness is expected at every waking hour.
I wonder why we do this. Why do we talk about the blessings of special needs children, of adoption, of large families, of homeschooling, of living in the country…but no one wants to give the other side of feeding tubes all night, the trauma of separation anxiety, financial struggles, learning disabilities and mud?
It’s sort of like inviting people to church. Come! We have programs, games, popcorn and potluck! Accept Jesus and all will be rosy!
It’s much harder to be truthful, to say, You’re invited, and we do have some pleasant things, but Jesus needs to accept YOU, and frankly, you’re unacceptable….your sins are filthy and you need to repent. Oh, and if and when you do, Jesus doesn’t promise you the best parking spaces everywhere you go. He promises persecution and trouble. BUT He’ll be with you, forgive you of all your sins and you’ll live forever in a place you’ll actually want to be in. Which–actually–makes the hardships and all of the pain worth it.
I’m combing Ruby’s hair. She’s grabbing at my hands, yelling “AAWK”. I get her to her chair, strap her in, and give her baked rhubarb-oatmeal and milk, which thankfully she can feed herself when she’s not throwing it to the walls. She giggles and gives me the biggest grin. Then she says, with actual words I can understand, a full and understandable and appropriate first time ever two-word sentence, “Thanks, Mom.”
Ruby is not happy all the time, but neither am I. But, together, we find joy in the little things, the little wins, and perhaps that is where the real blessings are after all.