Legacy of Love

Guest Blogger – Beth Craver 

 

For nine months intuition kept nagging me; telling me he was going to have Down syndrome. So When Judah was born and I knew-knew, it was kind of odd that I was completely shook. Like, To my core.

new born with Down syndrome, mom and dad.

Fortunately, I wasn’t voted “most optimistic” in my high school yearbook for nothing. Don’t get me wrong, I have lows…and oh how I did with Judah’s birth, but I’m a pull-up yer bootstraps , glass half full, never say never, carpe diem, kind of gal. Although- complete disclosure -I have zero clue what bootstraps are.

I immediately took to google as Judah waited beside me in his transparent hospital crib. I looked for inspiration. I clung to it. I was hanging off the cliff of despair digging my nails into stories of enlightenment. I found it in Nella’s birth story by Kelle Hampton. If you haven’t read it, it’s a must. I still tell her to this day that her story saved me. The similarities, the gift of permission to grieve, the rebirth of a new life. Her story allowed me the strength to crawl off the ridge, take my little baby home, and find my way.

For 2 weeks, I cried every day. But through snuggles and cloudy eyes, I immersed myself in this new world, finding out tidbits that helped me off the edge. There was mosaic Down syndrome, which doesn’t affect all DNA. (Spoiler alert, Judah doesn’t have that kind.) There were people who adopted kids with Down syndrome, which blew my mind, and there were these thousands of people who called themselves “lucky” for having this disability in their lives. I was confused and skeptical. But after we almost lost Judah at 18 days old to RSV, I was again reborn; determined for the world to understand why and how I loved this human so damn much.

Learn More about Down syndrome from our friends at The National Down Syndrome Society

I grew up in the 80’s. Work hard/ play hard was my dad’s motto (and still is mine to this day.) I had a job at 15, played every sport a girl could play in the 80’s, and was constantly measured against my grades on report cards and tests; to a point that it actually made me ill. It wasn’t my parent’s fault at all. In fact, I think I have absolutely exceptional parents. It was the time when productivity equated nobility.

I add that little anecdote because while I was walking around unchartered Down syndrome territory, I was searching for stories of worth. I found them, in little tokens of accomplishments. Tokens like: people with Down syndrome learning how to drive, going to college, running races, being models, speaking to congress, owning sock stores, painting pictures, being Gerber baby’s, getting married and even having babies of their own! These little tokens gave me life, much like in a video game where coins power you up. I was powered up alright. I was sharing monthly blog posts about incredible Down syndrome accomplishments all while reassuring my audience myself that Judah’s limits would know no bounds and that he himself might also be a famous *insert activity achievement here.*

Then, the language didn’t come and the autism diagnosis did. Stimming came aboard, and so did ABA teachers. And the more help we needed for elopement, flopping, and hitting, the less I saw Judah’s face gracing article covers about defying the Down syndrome odds. As a momma does, I blamed myself. I scolded too much screen time and eating that hot dog one time when I was pregnant. I felt defeated, unimportant, average; deflated.

But Judah never changed. He was who he was always meant to be. And he was never meant to be our trophy. He was never meant to shoot us to notoriety. And he never was meant to fulfill some vision I dreamt up for him. His worth was never supposed to be equated with how articulate his sentences were or how swiftly he could catch a ball. More importantly, how dare I decide who a 7 year old boy would be?

Down syndrome

He may live with us forever. And now when I say that, I don’t insert a “but” to counteract that statement. He may never talk in paragraphs. He may never have a best friend or even use the toilet on his own. My job was never to dream any of those things up for him anyway. I would lie if I said those statements don’t break my momma heart a little because they do. But only in the way that the grandiose plans we have for: life, ourselves, and our loved ones fade with time.

 

 

However, time will never dull his: fake laugh, his jokes, his hugs, how he greets the morning, or the way he loves a song. It won’t dull his unconfined excitement for hotels, restaurants, and swimming. Time won’t take away fun games he plays with his family or his tender pats when he knows your heart is hurting. And time won’t erase how we’ve all changed just for knowing Judah. The way we’ve become more patient, empathetic, careful, and appreciative of small delights the way he is. I mean, have you seen the way he loves ketchup? It’s otherworldly.

Accomplishments are cool. Awards and news stories and millions of followers are all pretty freaking awesome. But without them, we are not nothing. We are not average or unimportant or unworthy. Our value comes from the way we open people’s hearts. Our greatness is born from our character, not our conquests.

 

And as for the little stories that inspired me when Judah was born? They were what I needed at the time; like little ones need their blankie. Those stories helped peel me from the bluff and back onto the path. Our path. The one that twists and turns with beauty and heartbreak and a million mundane moments in between. This path of life is our legacy. I will not let it be the place that passes me by while I am making other plans for who Judah will be. It is the place I will live; unapologetic, unwavering, and unbelievably proud.

 

 

Little boy with Down syndrome wearing glasses and smiling

 

Judah we love YOU!

 

 

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