Down Syndrome is Challenging and Beautiful

i swear i just put her down and i can already hear the whining and thumping from upstairs. apparently nap time’s over. darn. this momma needed a break!

as i begin to reach the top of the stairs, the fumes coming from the hall are thick and all too familiar. think Sponge Bob - you know the episodes with the green, gas-like cloud billowing from the perpetrator?

the stench, the mess, the oblivion on her face. it’s not the first time.

she did it again. this sweet child of mine, almost five now, has a knack for digging into her diaper after waking from a nap. she mines for special treats be it nuggets to sprinkle about, or a facial mud mask to smear on (or would you believe it, consume?). this particular afternoon it’s the bedspread, the pillows, the walls, the carpet. yup, her poop is everywhere!

what i gathered from other mamas of kids with Down Syndrome, along with specialists, and teachers is that this is completely normal for her age range. uh-huh, normal for another few years. Gasp!

it’s no secret. raising this girl is HARD. she needs constant around-the-clock supervision and sometimes that isn’t even enough.

ever been pacing across the street hand-in-hand with a child for them to all of a sudden mutate into a 50-pound sack of potatoes, screaming and sinking into the asphalt? that’s called the flop and drop. when she purposely turns her body into full on dead weight and firmly plants her bottom on the ground. the only safe remedy? grab and drag.

should i mention the day she snuck out the front door at daycare? i had just dropped her off. not ten minutes later a random woman walking the neighborhood so graciously returned her. then called CPS. her nature is to bolt as fast as she can wherever she can: parks, playgrounds, parking lots. you can never let go of her hand unless you’re in a safe/contained area. you can never be too alert unless she is securely buckled down.

the kid obviously has a guardian angel. maybe even two or three!

one time she tried to climb on the back of a dining room chair. next thing i know as i’m lunging to remove the heavy chair from her face, blood’s splattered all over the kitchen and im holding her entire front tooth (root and all) in my hand. she’s barely even whimpering! over the years of accidents, we have theorized that she feels no pain.

she is aggressive,
she is impulsive,
she is defiant,
and when she doesn’t get her way,
she is LOUD.
in her mind, she was born to rule!

spirited, they say.

now, you know i wasn’t totally naïve getting into this down syndrome gig. clearly, adopting a child with special needs automatically enlists me into a most unusual parenting bracket. child-rearing is not the same because im not expecting the perfect reflection of myself. the denial, the grief, the heartache that comes with the special needs label is just not the same. in fact, it’s non-existent. 

she is just Alli. she is just one of my kids.

you might be surprised to know i don’t talk about Alli’s down syndrome a lot. as a matter of fact, i never do. not because i am afraid of it, or ashamed of it, or because it doesn’t affect me. on the contrary, i’d like to go on with life thinking Alli is just a child like the rest of ‘em. in a household with 5 other needy kids. i guess i’d be lying though, if i said she isn’t the center of it all.

our entire world revolves around what we can and cannot do with a perpetual one-year-old in a 5-year-old's body. Alli’s behavior changes everything. we can’t do normal family things because it just wouldn’t be normal to keep an almost 5-year-old in lock down mode on outings.

i used to think respite care was an appalling act of injustice, how dare you leave your child with a stranger so you can go to the grocery store, or go to a bowling alley with the rest of your family?! now i get it. yes, the state provides respite, "rest", from your exceptional child. maybe so you don't hurt yourself otherwise? preventative care perhaps?

sure, from the get go i recognized mothering an adopted child with down syndrome would require more patience, more energy, and more love all around. duh! i just may have left out… that tiny little thing, that thing that creates obstacles. namely, reality. laughable, right?

sigh. i’m embarrassed to admit i didn’t know it would be like this, i couldn’t foresee it. how the little quirks, i.e. her challenging behaviors, would continuously play out in all of our lives. for the other kids especially. when you have a not-so-typical sibling, you get a not-so-typical childhood to go with it. it's pure sacrifice for all involved.

so as a mother, as a mother who asked for this child no less, it is a sacrifice i must be willing to embrace. however hard. i was given this child to love. God knows im a wreck. my village has vanished. my husband, my kids, and my Jesus are all i have left (oh, and respite care). but oh how i need Jesus to embrace it... to enjoy it, not just endure it! i want to relish these days because maybe not chronologically, but developmentally she IS a baby. she needs her mama.

and as it turns out this whole mothering thing is a real sanctification process. and i'm a real selfish person. selfish, albeit willing to be pruned. and i am always, always being pruned of the garbage, the sin i hold onto, the "normal" i still crave and idolize.

i never imagined choosing to parent this child was just as much for me as it is for her. i thought i had what it takes. i thought i could teach her a few things. nah, it's her who's teaching me.

and i think it's probably true, she will ALWAYS be teaching her mama.

stick around and you will not only fall in love with her spirit, but you will see just how beautiful Down syndrome really is.

My light....