With my 4 year old entertaining herself in the other room, I turn my attention to my 21 month old. Paige signs to me that she's hungry so I grab the box of Cheerios, her favorite afternoon snack.
I set two down on the other side of the couch. Properly motivated, Paige pulls herself up & cruises down to her snack. I've set up the play cushions just far enough from the couch that she can lean over & weight shift to grab the other Cheerios I've put just out of reach.
I mentally run through the therapies we've done most recently:
Okay. Yes, the best use of this time is to focus on her Physical Therapy goal: to get in as many steps in as we can to encourage walking.
We continue.
I don't let myself ask why a snack can't just be a snack. I've learned in the last 21 months since Paige's surprise birth diagnosis of Down syndrome that it's best to stay in the moment. To be present, celebrating each win as it comes in our own timing.
When we first learned that Paige may have Down syndrome when she was in the NICU, all we heard about were the possible medical complications. About half of babies born with Down syndrome have a heart defect that requires surgery. She's at higher risk for leukemia, Alzheimer's, hearing loss. Etc, etc, etc.
In less than 2 years we've seen just about every specialist:
We've had 2 trips to the ER & 7 days in the PICU. One was discovering Paige had a milk protein allergy when she was 1 month old (instead of the intestinal bleeding that was suspected) the other a case of pneumonia that took a bad turn just before Christmas a few months ago.
I count ourselves lucky that we've haven't had any surgeries.
Paige has Physical Therapy once or twice a week. Speech Therapy & Occupation Therapy every other week. We have follow up appointments at a high risk speciality clinic & a monthly vaccine to keep her respiratory system protected.
It's a lot.
And honestly, I'm tired.
But what they don't tell you about Down syndrome is that these things, while overwhelming at times, don't actually matter.
While having a medically complicated kid is challenging, Paige is Paige. And who she is, is absolutely beautiful. And I'm not just saying that as her mom. Really! Ask anyone who has had the pleasure of spending time with her.
When Paige looks at you, she studies you. She wants to know you & she peers deep into your eyes, possibly your soul. She leans her whole body over until she catches your eye & smiles.
And when she smiles, it's with her whole body.
A few weeks ago while waiting to get bloodwork in a chaotic & anxious waiting room, Paige looked at everyone individually, connecting with them. She waved & eased the tension in the room. When we leave, everyone in the waiting room smiles, exchanging glances with each other, suddenly in the "in crowd" because Paige waved at them, too - brightening up days even when she's just had her arm poked.
Because everything is harder for her, she shows her incredible work ethic - at 21 month old - with incredible grace.
I'm still so new to the Down syndrome world & I know we have a tough journey of medical challenges ahead but of this I am certain:
The world is a better place because there are people who have Down syndrome.
If you're not lucky enough to have anyone with Down syndrome in your life, I highly recommend finding a way to change that.
Monday is Down Syndrome Awareness Day - 3/21 chosen specifically because Down syndrome, also known as Trisomy 21, occurs when your generic code has 3 copies of the 21st chromosome instead of 2.
I'm choosing to use my biggest place of influence, my business, to bring awareness to my experience with Down syndrome as well as to share with you the opportunity to support not only fair wages for Purse & Clutch artisans, but to also support a new foundation that truly aligns with my views of my precious daughter.
Now through Monday, we're donating 21% of sales to The Lucky Few Foundation, a global storytelling movement, shifting narratives to create a more inclusive world where everyone belongs.
The Lucky Few Foundation believes in a fully-inclusive world where our differences are not just accepted but celebrated, embraced & encouraged.