Ruby has Down syndrome.
That sentence is a heavy one.
For most of us (us 'special needs parents'), when we first get our diagnosis, it shakes us. Most likely because of what we think that diagnosis means. Or what the well-meaning doctor who delivered it may have told us it means. Or maybe it's because of what Dr. Google tells us it means.
And you know something, in some ways, they're all right.
The scary delays, the verbal and physical hurdles, the medical ramifications they speak of will affect all of us. We will have good days and bad days. Some of those bad days will be very bad days. (Those are usually due to our own expectations or self-imposed ideals about what our child's life should and shouldn't look like.)
Before you stop reading and write me off altogether, hear me out. I'm not saying that we should put all of our eggs in the basket with stereotypes. But I'm not going to sugarcoat things either. Down syndrome is not all rainbows and lollipops.
Ruby's road is hard, and it will get harder. We are in the easy stage right now. Her delays are only starting to be apparent. The gap between her and her peers will only grow with each month and year that passes. And even as she works every week with several therapists and countless home sessions, that gap will never
not exist.
And I worry. I worry about Ruby
all of the time. Every cough, every sniffle. Is this the time when she'll get sick, I mean, REALLY sick? Is this the cold that will turn into a full blown infection in her sinuses or chest and result in hospitalization? She is sick with small stuff way more than my other kids were, which makes me feel like an awesome parent....
And then there's the fun worry about if we're doing enough. Enough speech therapy, enough physical therapy, enough occupational therapy, enough music therapy, enough playgroups, enough homework. Is she working hard enough? Am I working hard enough? I'm ashamed to admit how many dollars have been spent in the last 18 months after 9PM when I'm alone with my worry about not doing enough. I search out the toy or therapy tool that I'm convinced I should have owned already and two days later it arrives on our door. I think most of that says a lot about me: maybe I'm not ok with accepting all of DS. Maybe I'm still trying to 'fix' her diagnosis. (Hello, bitter pill.)
Bottom line: all of the doctors' appointments and therapists and not-fun 'stuff' that comes along with a child with Down syndrome is hard. Really hard.
But what is NOT hard is everything else.
She makes loving her, snuggling her, caring for her so stinkin' easy. Seriously.
How many minutes I spend each hour just marveling in her perseverance. How often have I stopped my task to watch her thumbing through yet another book and 'reading' out loud. The girl is curious as the day is long, busy as any other baby I know, and as outgoing and social as Maddux.
And she's EASY. Who knows if it's because she is the third child, or because I'm a parent for the third time and I've relaxed my style, or if it's just because she's Ruby. But when I think about the struggles I went through with my other kids at this age, I'm amazed at how easy a toddler Ruby is so far. (And out of the three of them at this moment in time, she's the easiest also!)
They say parenting is the hardest, most rewarding job ever. (Man, 'they' have a lot to say!) Same goes
for parenting a child with Down syndrome. It can be crazy hard, but when she
reaches a milestone, it is amazing. And when she's working towards that
milestone, it is crazy amazing.
