I’ve been wondering a lot about your birthday blog this year. I kept thinking to myself how I’ve said it all. How there’s nothing new in the world of Down syndrome. How I’ve not only turned over every stone but have also dug deep in the earth below. And then today, without warning, I opened my eyes and opened my facebook. (This is something I have been vowing not to do as of late….so it serves me right I suppose.) I opened my page to find a headline so disturbing it brought me to tears before I could even bring myself to read it.
How dare the world shock me when I believed I was unflappable? ….when I believed I wore armor impenetrable by anything Down syndrome or disability. Well my darling, 4 delicious years later and I can still be brought to my knees by my fierce and innate need to protect you.
You’re still too young to understand this and by God’s grace, I hope the world changes before you are old enough to get it. But here is what they are saying about you:
They are saying that the world doesn’t get you. That they are scared of you. That because you take a bit longer to walk and talk and learn, that you are not worthy of life. They are saying that you are being put on a special list to be preserved because you are rare. You are not rare because of your changing environment like the polar bear though, you are rare because people are choosing that you need to not exist.
You are rare baby. You are a rare gem; hidden, secret and shimmery. You invoke gladness and goodness and you have come here to shine.
You are rare. You read people like no other. You know when I need a hug, need to laugh and you knew to come here to save me. You taught me patience and what it’s like to persevere in this world; to love this unfair world anyway.
You are rare in the way that you do not know how to be anything else but authentic. You can not pretend when you are frustrated. You don’t people please or put on airs. That is rare.
Your infectious laughter is rare and the way you dance whenever you hear the music as if nobody else is watching. That is also rare.
What you have brought to our family is rare. You have given us the drive to protect those in need and the ability to see everyone’s strengths.
The grandiose love I receive for spreading your story is rare. We get to see the world differently than some; full of love acceptance and through the eyes of the many people that have your back.
We get a rare glimpse into the world of special needs; a world where there are lots of figurative winks because we get “the hard and the beautiful” on such a deeper level.
So you see my son, you are rare…. but your article should read:
“People with Down syndrome on Time’s Most Influential List”
“People with Down syndrome on Nobel Peace Prize List”
“People with Down syndrome win hands down on How-To-Be-A-Human List”
You are winning at life my little love. You have got so much of it all figured out already. Thank you for teaching me and thank you for making me the lucky mom of someone rare.
I love you Bubby. Happy 4th birthday.
How have you been with us just 2 short years but we cannot remember life without you?
How does your secret smile steal our very soul?
How have you NOT always been the baby?
How stubborn can one human be?
How did you know we needed you; to fulfill us, to fix us, to help our family flourish?
How do you hold our heartstrings in your hand and play us like a puppeteer?
How do you know how to yearn with such God given passion?
How do you throw the perfect food curve-ball with such accuracy?
How come you despise sleep?
And how do you not know you need it?
How do you manage being an older and younger brother and not get lost in our shuffle?
How come you just want to be big?
But how are we still changing your diaper?
How can I ever help meet your many unreasonable requests?
And…How could I live without you?
Happy birthday Augie. Always my baby. Forever you’ll be!!!!
If you live in the world of disabilities you’ve probably uttered one of the following phrases:
God does not give people with special needs to special people. I am not special.
You just do what you have to do .
You would do the same thing.
We are just a typical family.
…or any variation of the sort. How do I know? Because in my moments of humility while navigating I have said the same words. I’ve always felt like I’m reading the cliff notes to keep up with the ever changing world of Down syndrome and therefore unable to deem myself “special.”
Well, I’m here to call us out on all of our mild mannered modesty because I’ve realized that we are special damn it and we deserve that title.
No, Not everyone can do it. Not everyone is able to raise a child with a disability. Not everyone will. Some torn souls will make the heart wrenching decision to put their child up for adoption. And some of you reading this may be one of the special souls who chose to adopt. These are the stories that warm us…..But, let’s be honest. There are entire countries attempting to prenatally diagnose disabilities and eradicate them. So, the fact that you show up everyday is not ordinary or what anyone would do. You are as unique as the lovely human you are raising.
My son has Down syndrome. I was once told that it was the “Cadillac of disabilities” and I was told by his pediatrician when he was just a week old that “out of all the heart breaking disabilities , his is also heart warming.” My point is this. Down syndrome isn’t easy. In my life there is elopement, language delay, communication barriers ,safety issues, social anxiety and many, many respiratory infections. And while I believe I deserve a pat on the back for not losing my shit on the daily, I do also recognize that in the world of disabilities there are more difficult roads to travel in not so comfortable vehicles. Regardless, we all deserve those prayers, worry free nights out, compensation and celebration of how damn special we are!
….Especially the incredible people who: clean and operate g -tubes, give shots, live in the hospital, fight for services, know their child is going to die, own a wheel chair accessible car, restrain their child when they are violent, never hear their child speak. The “parents” who are stared at, the ones who’s doctors begged them to abort and the ones who disobeyed doctors orders to not resuscitate.
When you are thrust into the world of disabilities you see the gamete. I’ve seen so much goodness from caregivers. To all of you: Please do not fool yourself into believing your work is typical, ordinary or otherwise. It is heroic to sacrifice for others …even if you made them. It is Godlike. It is other worldly. It is special. You are different. You’re child is different. We are not the same. I am tired of wearing that mixed up martyr mask. We exaggerate the downplay with an “aw shucks” and a “not little ol me.”
Let me be your voice of empowerment parents. You are doing something big while you navigate how to care for your child with special needs. You are showing love and empathy and most certainly have become a kinder person in this world. You advocate and celebrate and educate. You are changing the very definition of special needs just by being you. You are changing peoples minds and hearts. You are doing so much more than just showing up. Do not shyly and humbly deny yourself the compliments you so grandly deserve.
Instead, do what you would tell your child to do…..”Hold your head high and be proud of your special difference!!!!”
I love you.
From a fellow special needs parent
I don’t think about Down syndrome everyday. With three kiddos under 6 and two teachers in the household, there’s lots of other things to think about. There is Homework and diapers, so.many.diapers. There’s doctor appointments and surgeries and what in the world we are going to have for dinner? We balance quite a bit as Most families do and we still try and somehow have a bit of a social life.
Every now and then there’s a knock on my proverbial door reminding me of limits. Actually though, most days when I’m reminded of Down syndrome, the knock on the door is much more like publishing clearing house calling.
Here’s a couple of texts I have received from Judah’s therapists and teachers:
He rocked it at that fashion show last night. I think he found his calling.
He was amazing today. We were reading a book we had never read before and he saw a picture of a book in it and signed book all on his own to show me. He saw cars and made some car sounds, and when I was reading and the characters hugged, he hugged me! (I may have re-read that page twice)
His understanding of language has grown so much!!
Judah kept coming up to me, reaching for my hands to dance with him.So cute!!! Also imitated all the movements to the songs. Already full day rooms are asking me if he was approved for a full day, so they can attempt to lay claim to him. I really have to retire becauseI would be very jealous of someone else having him in the fall.
So that’s our life. We’ll be trucking along parenting away when something like Judah’s insane popularity at a local fashion show or incredible email from a teacher, or a made milestone or even an insensitive comment in the world of special needs will remind us “oh yeah, we’re doing something big here.”
This happened in abundance recently . I was thrust back into awareness. I had a rare moment to absorb how amazing of a thing we were indeed a part of.
I organized an experience. We all permanently penmanshipped our bodies with a symbol to represent Down syndrome. It was an idea born from a couple of drinks with my dear friend, and to be perfectly honest, it was one of the few times my ideas made it to fruition. And as we all inked the symbol we had grown to adore in #theluckyfew tattoo, I more wore the burden of hoping nobody had regrets. Well, happily, regrets were unseen, rewards were many , and I checked a bucket list box in the name of advocacy.
That same week, I had to take a class. Many parents of children with special needs have taken it. It is your ticket in the door for Medicaid. It was mostly about older people with disabilities and the videos showcased many adults with Down syndrome. It was an obligation and so I obliged. I was not prepared for pits in my belly about the semantics. In my brain, I can look into Judah’s future a few years; the preparedness of kindergarten. I was not prepared to absorb how I need to plan for when I watch over him from heaven. That was hard. It was a gut punch and it was a sucker one. I didn’t see it coming. The good and the gracious we’re at a stop light as reality had the right of way. Thinking that particular way is difficult with your typical children, taking a class to make sure you get it right is painstaking. This was NOT publishers clearing house with balloons at my door. It was more like a summons.
In the same week I also said yes to this next move and am not sure how I did.
Months ago I spoke of the Gerber baby having Down syndrome and my incredible pride. You can read it Here. I also spoke of regret…..how my mom was so sure Judah should be entered in such a contest and how I just laughed it off; thinking it impossible. I revealed disappointment in my own disbelief and I surprisingly was welcomed with an opportunity to debunk it.
Judah was to be a model at the local Ronald McDonald fashion show.
The show started at 8pm…exactly one half hour after his bedtime. I was petrified about how he would handle it. He doesn’t do past his bedtime very well. Nor does he do crowds. Luckily he does center of attention and applause really really well.
He sparkled……like a freaking diamond!!!
With that weight climbing down from my piggy back ride, I rolled right into Gala weekend..
There was nothing left to be done. The donations were delivered. The t’s were crossed, the I’s were dotted, the babysitter was booked and the Uber ordered. And so I felt all done… until I realized, I wasn’t! I flew date night style into a release. I rode that Uber relaxed. And then I walked up those poetic stairs, seeing first, the canvas portrait of my very own DNA staring sweetly back at me. I swear Ed McMahon himself was knocking and shouting “you won!!” You won this life, do something big with it.” Again, I was bowled over. I rolled a strike. I remembered. This is something otherworldly.
Between the diapers and teaching and never ending teachable moment stuff with our own kids (aka, nice touches to your brother only, we don’t throw toys, stop digging in your diaper) Bobby and I rarely get to just clasp hands, squeeze and remind. This night I’m not sure we ever let go. Him and I; the creators of the magic, we stood as one, nodding in affirmation of all the beauty.
The clincher for us was the speech made by Heather Avis, author of the book “The Lucky Few”
I am very conscious of the way she spoke of her children with Down syndrome. Heather paved her path. 100 percent she chose the way she would travel. I do not wish to imply she had no struggle, because if you know infertility and adoption and Down syndrome well than you know she did. But I want to highlight here how our situations were 180 degrees; her choosing a baby with Down syndrome, me momentarily devastated by one. She was different from me but we were still the same. My God how that notion is so universal.
Heather said two profound things to us that night: ” miracles await you” and “we can do hard things ”
Those sentiments spoke volumes to me . Down syndrome is balloons at your door and it is also reality knocking . It is the lovely with a price tag . It is extra. Extra chromosomes and extra adoration. It is extra work and surprises. It is extra magic and magic undone. It is all of the moments trekking along in the trenches whispering “we can do this.” And those moments followed by some miracle like Judah pointing, knowing his colors, or maybe someday saying mama.
It reminder that it is a non complacent life. It is a life full of copious effort. It is a life full of meaning. It is a life I would choose a million times over.
Last month I went to the play “Dirty Dancing” When the song came on at the end “I had the Time of My Life,” everyone was clapping and singing…..and I was nostalgically swooning.
You see, when you were not quite a month old, we took you to a wedding. I danced with you to this song. A first time, new mommy, held your head carefully and protectively twirled you around the dance floor. I teared up then and I well up now as I recall so clearly looking deep into your enormous blues and singing:
No I’ve never felt this way before, yeah I swear, it’s the truth, I owe it all to you”
and every single lyric was so damn true that I told daddy on the way home…..that will be the song I dance with you to at your wedding.
Since that precious night, I have dreamt many dreams for you and for us. They swirled around you like the sweet smell of coffee. I’m not talking about things like you being a baseball star (although I did push the golf agenda a bit the minute you could stand,) or being a doctor or lawyer.
I dreamt up your 1st birthday around Cookie Monster hoping you would love him like I do. I dreamt of us sitting eating ice cream talking about all the things. I dreamt you’d love books and we’d pour over them. I dreamt what your face would look like as you grew older and how I would be as a mom; fun, understanding, patient. When I held you as a baby, and you made me a first time mom, I referred to you as my little bug-a-boo and I dreamt up millions of moments big and small.
Today you turn 6 and while I still wonder things like if I will be the one who gets to teach you to drive or how I can help ease your first broken heart…. my dreams for you wait in the backseat…. because you have your own dreams now. And they are grandiose. You no longer sleep with cookie, you’d rather build than read ,we love to share a good ice cream cone and I’m half the mom I wanted to be to you before I knew you’d have to share my time with your two brothers.
You are so you. You create and invent as a visionary that I actually respect. Your turtle tank; incredible, the phone you made out of wood, cardboard and paper; outstanding! Your zest for the imaginative life of sparks a nostalgia of my own youth, and perhaps a bit of jealousy for how mine has drifted and yours is magnified. Your likes and dislikes are so rooted in who you are. And I’m proud. I’m no longer a weepy mess as you climb because you do it with such elegance, wonder and confidence. And when I do utter “I miss my baby” to you as I occasionally do…you snuggle up to me and gently remind me with a joke that I am pretty sure you invented yourself:
mommy, what goes up but can’t come down? Your age.
You really have this way. You are a sensitive, old soul with a need for snuggles and thirst for independence.
And you dream so big baby boy that I trust your dreams and I love them. And while I wish that I could have absorbed more (we always wish we could have absorbed more, know that. That is life) the thrill of what you are becoming is a feeling much more powerful than the wistfulness of what you were.
HAPPY BIRTHDAY DARLING. I LOVE YOU.
There was a time not too long ago (and by not too long ago I mean last week) when I wanted to rush all this littleness along. I know, I know “enjoy every minute,” ” the days are long and years are short” and “it all goes by so fast.” I get it…In fact I read a mommas perspective on “enjoy every minute” and commented about it. I shouted how that statement made us hair ripping mommies feel guilty when we are hiding in our *insert room here* for a moment of solitude and peace.
So how in one fleeting moment did I drop to my knees praying for time to remain still??? My five year plan.
It was a morning like any other. I was primping with potions getting ready for work. Mascara and hair product and plenty of concealer. And my mind was wandering I began to imagine where I’d like to see myself professionally in 5 years. I am a kindergarten teacher and although I’ve met some lifers I can see how the burnout rate would be a quick one. So, if I were to burn out what would I do? Where would I go? What did I want to be when I grew up?
And in that moment where I left the present (like I often do) to ponder the future, I started to do some math on my fingers. In 5 years. My baby would be 6, a few months older than my oldest is now…my oldest 11!!! My middles son, 8! How could it be that in 5 very short years I would be crib-less and diaper free? Especially when I feel consumed by piles of knock-off pampers now? In just five years would Elmo still even live here? Would the tooth fairy or even dare I say Santa be a faded fairytale? And I just know I’ll be in the thick of sports practices and grocery bills.
I always knew these things were inevitable but I didn’t realize they existed within my teeny- tiny 5 year plan.
So now what? Well. Things have morphed a bit for me. You see, cardboard boxes shaped like rocket ships are now allowed to remain as permanent decor. I’m not in a rush to discard the overflowing amount of toys I trip on daily and bath time is no longer a chink in my chain. When they are screeching and clinging, I’m breathing and my mantra exhales “five short years is all you got mama.”
Don’t get it twisted, I still self medicate with a glass of wine, roll my eyes when someone needs wiping and wake up bleary and worn with new wrinkles. But my five year plan is now one that is focused on looking at my messy life through rosy colored spectacles.
I cannot imagine the amount of mammogram stories there are out in the big internet- world of ours; astonishing tales of devastating news, trials, pain, worry and exhilaration.
To be honest, mine does not have an ending just yet because this was an entirely different story…
I am a 43, (approaching 44,) mother of 3 very little boys. All under 6 to be exact. If we do the math, My youngest was born when I was 42 my oldest when i was 38 and my middle when I was 40. My middle munchkin was also born unknowingly with an adorable extra chromosome, or as you more commonly call it; Down syndrome . I am a full time kindergarten teacher and as you would imagine, a very busy woman.
So, I crammed and rushed to schedule my yearly breast exam appointment. I did it for those little boys . My God I want to see them as men. This, I am sure, is not an unusual anecdote. It is probably also not odd to hear how this mother of boys often longs for a pink beaming bow. I know I’m “geriatric” in the child bearing sense and that my plate is spilling on the floor it is so freaking full…but still my loins ache for pink. I am beginning to understand that a mother’s loins always ache for something.
So, on appointment day I was asked a barrage of questions, including, “is there a chance you are pregnant?” My immediate response “NO!!!” My calculated response: NO? I don’t think so? Probably not? To which the tech responded ” I do not feel comforatable with your exam unless you are sure. There is a ton of radiation back there.”
Well now I was freaked and they would not give me a pregnancy test on the spot . So off I went with no mammogram and a worried wonder settling deep in my belly.
All logic parts of my brain said “no way.” My husband and I ( both teachers, both hands on raising our babies, both extremely otherwise occupied) had only been intimate twice. Both times were safe and the vasectomy had been scheduled . It could not be. But my analytical mind went deep. I saw that rabbit hole and I dove in cerebellum first:
Would we have to move…AGAIN! What if I had another boy? What if I had to handle the news of another disability? What if it wasn’t Down syndrome? How would we find the money or time? What would happen to my body and my relationship? Who would ever agree to watch four kids so we could have a date? What about Car seats and Pack and plays?
My head swirled. My nerves buzzed on the surface.
I took to sharing. It’s how I deal. I told my husband and my friends. They laughed with me, worried for me, showed me incredulous faces and urged me to take a test. I prayed too. I prayed that there was not a baby inside my belly. I took back all the the loin longing for a girl.
I also convinced myself that I had every single early sign of pregnancy. Omg! Did my boobs hurt? Why was I tired? Why was I not wishing for a glass of wine? Why did chicken seem gross?
Above all, I was unusually happy with what I already had. I was satisfied. I begged for things not to change. I pleaded…”please do not let this be undone.”
I thought about taking a test before work. The suspense was twisting me… but the unsuspecting positive test with my third boy had me spooked. So all day I contemplated. I struggled and I realized how damn lucky I already was.
The test was negative.
And here I sit.
I am entirely gracious and full of divinity. I may have even galloped a bit on my walk today. So why am I writing this?
This is not a tale of tradgedy or even beauty in the unexpected. It is a story that has me doing what we all do. It is the story of “phew.” I wished and I prayed. I rallied the troops and my wish was granted.
But isn’t this a story we know all too well these days?
It is a story of “what if my story was different?” It is a story of “be thankful for what you have because it could all change in a fleeting second” it is a question of “how do I hold onto the enjoyment in this moment and don’t forget how good I have it?”
It is a feeling of “how do I keep the gratitude close and the complaining away…. without a concerning event to remind me?”
It is a question unanswered for now I am afraid. However, it is a note to hold on to happy with a tight grip and grateful heart. It is being thankful for the reminder… and a hope that no more are needed.