Recap – October 2019 Down syndrome Awareness Month Part I

I committed to posting a story, fact, or support note on Facebook each day during October 2019 in honor of Down syndrome Awareness Month. I’d like each post to live in one place, so here they are for ease of reference.

October 1 – October is Down syndrome awareness month. I’m here to answer any questions and share stories if you’re in need. In short, for me Down syndrome is Love and Pure Potential. “You are you and I am me, just exactly how life is meant to be!” –KSH, excerpt from I Am Me available December 2019

October 2 – Down syndrome Awareness Month – Day 2! Every parent ever has said this, “They’re only little for a short while…” and golly, this is so true! It’s hard to remember Jameson in this 7lb 1oz tiny size when I see him now.  Life is amazing.

October 3 – It’s Day 3 of Down syndrome Awareness Month. Jameson attended his second dance class today. From 3 months old and unable to hold up his own head yet to walking on his own today, he’s put in so much hard work and tackles it all with a smile! You are our Super Jay!

October 4 – It’s day 4 of Down syndrome Awareness Month! Using Person-First Language
–A disability is something a person has; it is NOT who they are.
–Name the person before the descriptor. It is better to say, “Jay has Down syndrome” or “man with a visual impairment.” NOT “Jay’s Downs” or “Down syndrome boy”

October 5 – Down syndrome Awareness Month day 5. Even though he is small, Jameson is mighty!

October 6 – Down syndrome Awareness Month day 6. This is a track we didn’t know we were meant for, but we are so happy we’re on it “You’ll follow your track through twists and through bends,
And stop at new stops and pick up new friends.
They’ll all come aboard with smiles and greetings.
You’ll have such great times with the people you’re meeting.” -I Knew You Could, Platt & Munk

October 7 – Down syndrome Awareness Month day 7! The gift that disguises itself as fear and uncertainty, but quickly transitions into pure potential and love and keeps on giving… I love you with my whole heart.
I love you with my whole brain.
I love you with my whole body.
And, I’ll always love you just the same.

October 8 – Down syndrome Awareness Month day 8. Our little ones are fighters! Some have to go through open heart surgery just months old, and again a little later in life. To you and your parents I say, “You are SUPER!” Although Jay didn’t have any heart complications, we did have a health scare at 2 months and found ourselves at Helen DeVos Children’s Hospital. He wasn’t gaining weight and he was spitting up after feedings so much that Ben and I jumped in the car, with nothing packed, and drove to the ER at 2am one night. Jay had Pyloric Stenosis – a thickening or swelling of the pylorus — the muscle between the stomach and the intestines — that causes severe and forceful vomiting in the first few months of life. It’s something my mom, too, had surgery for when she was just an infant. We knew my mom’s history going to the hospital, in fact, she was worried about Jameson and the condition a few weeks prior. When we got to the hospital, we told the nurse about our thoughts and they said Jameson was to young to have that condition. But, we advocated and asked, pushed really, for a stomach ultrasound … and they found exactly that. Jay was in surgery that afternoon. You feel so helpless when there’s something going on inside your little human. Looking back, it’s all a blur. But, it is also a reminder of how strong Jameson is…how strong people truly are.

October 9 – Down syndrome Awareness Month day 9. Every child (every person) is who they are meant to be, period. As quoted by Heather Avis in Scoot Over and Make Room: “Jean Vanier: ‘..our world is not just a world of competition, the weakest and the strongest. Everybody can have [a] place.'”

October 10 – Down syndrome Awareness Month day 10. OWL – Observe, Wait, Listen. Jameson is pretty social and loves to say “Hi” and wave to anyone and everyone more and more lately. When giving Jay tasks or teaching him new things, he often just needs a bit more time to consider, to think, and to respond. In so many ways, this has been a life lesson for me! Jay encourages me with his actions and his words (signing, action, or verbal) to give him the grace and the opportunity to respond in his own way, at his own pace; when Jameson is ready. Sometimes that means 5 minutes of a little back and forth between “first lets change your diaper, and then we can watch some of Coco!” (Jameson’s favorite movie of the day is Coco, along with Sing and Despicable Me 3 … movies full of music). He hears my request, he listens to understand, and he knows what I am asking. He though, like so many other kids, just wants to watch Coco now, rather than wait.  But after a few minutes of stalemate, he looks at me, signs “first” and points at his diaper, and then very clearly, points at the TV and says “Coco!” Then, he puts both hands to the ground, plops his bottom down and sort of side rolls onto his back so we complete his diaper change. And, you guessed it, when I’m all done he’s back to pointing at the TV and saying, “Coco!” and signing “please”. What a kid, right?! 

All people with Down syndrome experience cognitive delays, but the effect can be mild to moderate and is not indicative of the many strengths and talents that each individual possesses. More detail at https://www.ndss.org/about-down-syndro…/down-syndrome-facts/

October 11 – Down syndrome Awareness Month day 11! Raising a child takes a lot of work. Add in physical therapy, occupational therapy, and medical appointments, on top of full time jobs, a house to maintain, bills to pay, etc. Children are SUPER … but tiring, to put it bluntly. Parenting involves a level of give and take. Life is different with a child in it, and it is new, unknown, and bursting with potential. Being intentional is a struggle when life is pulling me in so many directions. But, to be intentionally present with and for Jameson as much as possible is my parenting goal. Today I salute the Dads. Your love is genuine. Your excitement at milestones is palpable. Your always up for a little football/wrestling/dancing/basketball/tickle fight. In our situation, Jay’s Dad was there at our 22 week official ultrasound diagnosis, at birth for the confirmation of Jameson’s diagnosis, and Jay’s Dad is intentionally present with Jameson everyday, even if only for a few hours after work. We make a good team.

October 12 – Down syndrome Awareness Month day 12! We celebrate the little and the big milestones. Each takes hard work and a whole lot of patience.

October 13 – Down syndrome Awareness Month day 13. Jameson loves books! Some of his favorites include The Wonky Donkey, Goodnight Gorilla, and You’re Here For A Reason. And soon, he’ll have a book in his hands that was written for and because of him ❤️

October 14 – Day 14 of Down syndrome Awareness Month. It is our differences that make us who we are and help us to see the world in our own way. “There’s just one me, nobody like me, take a look and see, just one me.” -Sesame Street Song by Pentatonix People of all ages, shapes, sizes, and colors have things in common; it could be their friends, it could be their hair color, it could be their favorite book or song, it could be their dream to become a professional soccer player. We are individuals, but we are always a part of a community. A community is made up of individuals and each individual plays a vital role in their community!

October 15 – Today is day 15 of Down syndrome Awareness (Acceptance!) Month. The dictionary definition of a disability is a physical or mental condition that limits a person’s movements, senses, or activities; it is considered a disadvantage or handicap. However, more and more, the term disability is referred to instead as “differently abled” or “exceptional people”. Which of the above definitions evokes a more positive message about people living in a different situation from your own? The later, right? Wouldn’t an even more positive definition simply be “able” … though we are different, we are able. ABLE!

 

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