“A day without sunshine is like, you know, night.” ― Steve Martin
Okay, I’ll be the first to admit it. My blog has become a little maudlin. October is Down Syndrome Awareness Month. Last October, I was blissfully pregnant. Scratch that. I was really pregnant and having constant false labor. It was awesome. *note sarcasm
So this October, 11 months after the little miss was born, I think I’ll start the month with a “day-in-the-life” blog. Really I want you to get the full picture of how different my life is from the life of another stay-at-home mom with a “chromosomally typical” (my favorite phrase) child.
6:30 AM – Children wake up. Mia babbles and cries for us from her crib. Fynn rolls over and kicks me because at some point in the night Fynn found his way to the “big bed.” We all wander around trying to wake up. Nate is usually on his way to work around this time and I’m fumbling in the kitchen looking for the coffee grinder and cursing myself for not washing the coffee pot the night before.
6:30 AM – 9:30 AM – Children eat breakfast, Fynn watches a little PBS, and I might start on a project I’ve been working on for someone or myself. And literally a hundred times I chase Mia around the apartment, stopping her from pulling Tupperware off the shelf in the kitchen, pulling books off the bookshelf, and trying to play in the bathroom (I really need baby gates). Oh, and rescuing Fynn because she likes to pull his hair. Mia and I play ground-breaking baby games like “peek-a-boo,” reading books, standing at the ottoman, and eating puzzle pieces. Oh, and we have multiple conversations and I get waved at quite a bit, usually before she heads off somewhere to get into some more trouble. Meanwhile, Fynn has likely pulled every single toy out of its resting place and makes sure the house is good and messy. And we’ve probably played cars about a dozen times.
9:30 AM – If it’s a Tuesday, we head to Fynn’s occupational therapy appointment. It’s an hour of Fynn playing on swings, skate boards (on his stomach), trampolines, and he works on writing, puzzles, and other fine motor skills. Mia and I watch. Mia is very fascinated by OT.
If it’s another day, Mia takes a nap and I frantically clean up the choking-hazard toys that Fynn has left strewn about the floor.
11:30 – 12:30 – Lunch usually takes about an hour and I hope I get to eat, otherwise I try to survive on coffee and fruit snacks. (I’m the picture of healthy eating.)
1:00 PM – 1:45 PM – If it’s a Tuesday, Mia has physical therapy at the apartment. So the therapist works on standing and crawling and sitting. You know, baby things.
If it’s a Wednesday, we are headed to Fynn’s speech therapy appointment. He works on diction and following directions. Mia mostly just talks to herself in the mirror in the therapist’s office and crawls around the crash mat on the floor.
If it’s any other day, we’re heading to one of these places – Betty Brinn Children’s Museum, Discovery World, Milwaukee Public Museum, Milwaukee County Zoo, Milwaukee Public Library, Audubon Nature Center, the park, or our apartment courtyard. (And typically Mia is strapped to my chest because she HATES the stroller. I’m getting a strong back and shoulders. How many calories do you think that burns?)
2:30 PM – 3:00 PM. If it’s a Wednesday, I’m speeding (don’t tell the Sheriff) down 94 to make it to Mia’s occupational therapy appointment at our apartment, where she works on fine motor skills. Then she naps.
If it’s not, Mia naps and Fynn has some quiet time – reading, movie, etc. I try to clean up the house so it doesn’t look like the kids won. Fynn and I will play games or make crafts or read books.
4:30 PM – Everyone is back to playing. I’m chasing Mia around the house again (Am I up to 1,000 rescues yet? We really, really need baby gates.) Mia and I do some more playing and talking.
5:30 PM – Nate gets home! I’m done for the day. LOL. No, we try to cook dinner and I trap Mia in the pack ‘n play (Her favorite place to scream. I imagine the angry things she’s saying to me about baby prisons.)
6:30 PM – Mia makes a gigantic mess at dinner, and we beg Fynn to eat SOMETHING other than PB&J while he tells us that all the food tastes horrible. The latest this week? “The chicken is too dirty (breaded) and the rice is too ricey (self explanatory).”
7:00 PM – If the entire day has gone as it should, Mia gets a bath and goes to bed.
7:30 PM – Fynn gets a bath, and then he goes to bed.
If all has gone pear shaped like last night:
Fynn wanders around the apartment pulling out even more toys and saying sassy things. Mia insists that she’s WIDE awake and screams if I try to “cuddle her to sleep.” Fynn finally makes it to bed at 9 PM. Mia falls asleep at 10 PM. Nate and I watch an episode of “Mad Men” and then crash.
In case you were wondering, we have Fynn’s occupational therapy every week and Mia has physical therapy every week. Fynn has speech every other week, and Mia has occupational therapy every other week.
So I want you to do the math. On the weeks that we have “a lot of therapy” it’s four hours. That’s it. Four hours. There are two hours when I have to think about Down syndrome, and two hours when I have to think about sensory processing disorder. That is all. When we add on speech, it will be five hours.
In reality our life is not very different from a typical home with a 4-year-old boy and an 11-month-old girl, except we have 4 hours in the week when someone else plays with our kids.
I know this is going to sound crazy, but in the day-to-day reality of life, Down syndrome doesn’t really affect us. It doesn’t, but don’t think I’m in some sort of massive denial. It will come. IEPs, behavior issues, delays, etc. will come, but right now she’s just a baby. A very typical baby.
She’s a healthy little girl with Down syndrome. I’m not joking when I say that she’s been sick 1 time in 11 months. I was expecting her to be sick all the time. One cold last week.
The only way Down syndrome affects me right now is in my head. Worry, sadness, frustration, and anger; it’s all mental. Mia is doing nothing to affect our life in a negative way. My head is doing all of that work for her. She is just doing her thing every day, and her “thing” is being an infant. It’s me that has the problem.
I know that there will be many, many frustrations, school decisions, big adult decisions, and on and on down the road. I do understand this and worry about this more than you can imagine. I just don’t want anyone to think I’m some sort of superwoman for what I have to deal with day in and day out right this minute. No one should think, “How in the world does she get through the day?” I mean, if you just think that automatically when you imagine a stay-at-home mom with a sassy 4-year-old and a very mobile infant, then that’s okay.
I’m just your average mom doing the things that moms do every day. I basically educate and make sure the kids don’t accidentally kill themselves. It’s a big job.