I’ve never done a blog hop before, but what the heck? It’s World Down Syndrome Day, so what better time to try something new? Evidently the theme of this hop is “A Day in the Life.” And I’ve been thinking a lot about World Down Syndrome Day and about our life. Because here’s the thing:
In our house, every day is Down syndrome day. But then again, it isn’t.
In the 2 years, 1 month, and 17 days since our son Samuel was born and we received his diagnosis of Down syndrome, not a single day has passed where I haven’t thought about Down syndrome. I can’t not think about it, because in a small way, it affects every day of our lives.
But one word there is key: small. In a small way, it affects every day of our lives. Because let me tell you about a day in the life…
We wake up early. Chris is up at 5:20 to get ready for work, and I get up and work, too, in those quiet moments before the boys wake up. Sometime before 6:45, Sam and Theo wake up—either on their own or with a gentle nudge from Mom. We head downstairs for a rushed breakfast, which consists of Theo talking a mile a minute about everything in his six-year-old brain and Sam throwing his food on the floor and not eating because…well, he’s a picky little eater.
We shuffle out into the garage and get in the van for the tedious 40-minute drive to Theo’s school. Sam babbles and claps along to songs on the radio while Theo talks a mile a minute about everything in his six-year-old head. (Sensing a theme there?)
We drop Theo off at school, where I try not to curse the rude drivers in the bus circle. So far a pretty typical day in the life, right?
Our next step depends on the day. If it’s Monday, Wednesday, or Friday, I drop Sam at his Early Intervention on-site program. He starts to bawl when I leave because…well, he’s a mama’s boy. (Not that I mind!) He quiets down the minute I’m out of sight, which I know because I sneak around a corner and eavesdrop for a minute before leaving. Then I go for a quick jog before getting to work, or I volunteer at Theo’s school.
So here, Down syndrome has crept in. I wouldn’t be dropping my son at Early Intervention if he didn’t have Down syndrome. But I’m not walking him into the building thinking, “Oh my god, we’re here because of the extra chromosome!” I’m just thinking, “It’s Monday—time for school! I wonder if he’ll be brave enough to actually look at the banana I packed in his lunch today.” So Down syndrome is there…but it’s not.
But let’s say it’s Tuesday instead. Tuesday is therapy day! Both Theo and Sam have therapies (physical and speech for Sam, and occupational for Theo), and I try to pack most of them in on Tuesdays. Get it all over with in one day! Tuesday is not Sam’s favorite day, as he is not a devotee of therapy, but we start it out special by stopping at the Safeway Starbucks kiosk for a tasty coffee drink for me. You see, Sam has quite a fan club at the Safeway Starbucks kiosk. They love him. I mean, really love him. Sam has no sense of stranger-danger or natural reserve—he loves openly and unabashedly, and this fact is completely irresistible to people, I’ve found.
So we stop at Safeway, and his fan club fawns all over him (and makes me a delicious treat while they’re at it!). His biggest fan proclaims, “He is the most beautiful baby, and he makes my heart happy! You know why? Because he smiles straight from the heart! You can see it come straight from his heart!” Very true. That kid has a smile to melt icebergs.
Then it’s home for physical therapy. And there’s that Down syndrome again. Before that, I was just the mom with the adorable baby. Now I’m the mom whose baby has to have physical therapy…because he has Down syndrome. But you know what? I really like the therapist. We have fun. (Well, Sam doesn’t so much, but we do while we work with him.) So it’s not so bad. I don’t even really mind that we have to do physical and speech therapy because I’m such a fan of his therapists—they’re part of a carefully chosen team that I really admire and respect. So Down syndrome creeps in…but then it doesn’t. It’s just part of our day.
Theo gets home around noon (by one means or another), and Sam takes a nap while I work and Theo decompresses with some iPad time. Afternoons differ depending on the day, but there’s always play. And sometimes an errand or a park trip. If we’re out and about, Down syndrome inevitably creeps in. Rarely a day passes that someone doesn’t ask me how old Sam is, and then literally gasp or recoil a bit when they discover he’s two years old. Because he’s pretty darn tiny. He’s about the size of a 9- to 12-month old. Down syndrome again—it’s there, but it’s not. Because I don’t let it be there. I simply smile and say, “Yeah, he’s tiny.” I don’t announce, “Oh yes, he looks quite small because his extra chromosome delays his growth!”
My ultimate goal for Sam is for him to be treated like any child, and I figure the best way to achieve that is for me to treat him like any child. I wouldn’t introduce Theo to someone by saying, “This is my son, Theo. He is classified as being on the autism spectrum!” No, I just say, “This is my son, Theo,” and I let him speak for himself. And so, I let Sam speak for himself as well, after a brief nod to the fact that yeah, he’s quite small.
And no, Sam doesn’t actually speak yet, nor does he walk. Again, Down syndrome there…but then again, not. Because a nine-month-old doesn’t typically speak or walk, and in reality, Sam is very much like a typical nine-month-old. I don’t need to think of his extra chromosome, I simply consider his developmental age as a bit younger than his real age of 26 months.
If someone asks more about Sam, I’m happy to talk about him. If Down syndrome comes up, I’m 100% fine with discussing it. I just don’t go out of my way to throw it out there that he has Down syndrome, because why would I? He’s my son. Period. There’s a lot more to him than that, and I’m happy to talk about any and all of the parts that make him Sam. Yes, the Down syndrome is there…but it’s not. It doesn’t have to be the main topic of conversation. Instead, let’s talk about his great love of Baby Signing Time or cars or goldfish crackers or his silly older brother. And if you want to talk about Down syndrome, then that’s fine, too.
We go home and wait for Chris to get home. Chris feeds the boys dinner while I work. Which consists of Theo talking a mile a minute about anything and everything in his six-year-old brain, and Sam throwing his food on the floor and fussing because…well, he’s a picky eater.
There’s some playtime. Sometimes there’s a family walk. There are baths. There’s bedtime and warm snuggles with a tiny baby face pressed into the warm hollow between my neck and shoulder. There’s a tiny, chubby hand stroking my cheek as I tell him it’s time for sleep. Down syndrome is not anywhere there. There is just love.
P.S. Well, this was SUPPOSED to be part of a blog hop, but I can’t figure out the link part. So I guess it’s just a post!!