Ever since I made the announcement that I was having you people started telling me not to blink because it all goes by so fast. So, I soaked you in real good. I snuggled you close for long lingering afternoons and let chores remain undone. I played with you and as I did, I bore holes in to my brain of what it felt like so it could not escape. I took pictures. Lots of pictures. I took you places. Lots of places. I would not forget. It would not go too fast. I would not miss a thing or regret a moment. I would hold on for dear life to the sound of your voice. I would ingrain your adorable Calvin-isms into my long term. I actually have them all saved on my phone. I analyzed your face from every angle , your fingers from every knuckle; especially how they looked clasped in mine. I watched you sleep. I still watch you sleep. And every chance I get I squeeze you hard like you’re leaving for your first semester abroad.
But guess what? I’m still forgetting. I’m blinking. It’s not that I’m not absorbing. It’s just that you are changing faster than my mind can lock the previous version of you in my memory bank. You are constantly morphing into a more independent, opinionated, stronger character. According to you, all this change means you may like mashed potatoes again. And you also told me you’ll never change so much that you won’t need my help building robots, so that’s a relief.
The things you said were cute and funny quips. But I did what I do and I took them to heart…..:
I told you that you were changing so quickly and your instinct was to comfort me by reassuring me that it could be a positive change…one that involves your old favorite side dish, mashed potatoes. You’ll never change from that incredibly kind boy who looks out for other people’s feelings. You’ll always find a way to look at the bright side when someone is down in the dumps and you’ll continue to make me laugh with your delightful introspect.
When you asked me why I wanted you to stay six a little longer, I was honest. I told you that as you grow you don’t need as much help from me and I really enjoy helping you with things. You made a conscious decision to always need my help building robots. I love that you know you will continue to love robots. You know yourself so good. You aren’t a flip-flopper and unapologetic-ally so. God I hope you don’t lose that. Because we do sometimes. We lose ourselves to become what others want to see in us. Or we lose us to how we want to be seen. We wear masks. Please, don’t do that. Do not cover your beautiful soul.
And finally, you put family first. You want me and your dad to help you build robots and forts and watch shows and you want us all to be together all the time. Believe me, I wish that wouldn’t change. And I will foster your love for that with abandonment. To fly is inevitable though. And I want it. I wish it for you.
Just please don’t forget that there will always be mashed potatoes at the dinner table waiting for you if you decide to like them again. And there will always be a stash of cardboard, tape, and markers for robots waiting to be built. And when it goes away, which it will surely do…. Well then I will find peace in knowing that I peeled my eyes open all the time. I did all I could do to stop them from blinking.
Happy 7th birthday. You are spectacular darling. Just spectacular!!!!
Worry is like a wart, a blemish, a literal gray hair. It is an extension of me that I wish wasn’t there. It shows itself with just the smallest amount of prompting; most often while the birds cease their chirping and the world is dark. It is incessant, relentless and it picks up speed as thoughts feed off each other like a persistent connect the dots. And then….the light of comes and the sun blurs it a little. Warm hot coffee and laughing littles lessen its blow.
Today surgeries are complete. Doctors and specialists have called to give their all clear and I can feel how I will flow through this day with ease. My shoulders don’t hug my ears. My breath is not hard to swallow. My heart does not feel trapped in my chest. Biopsies came back all clear, MRI’s all clear, bills paid, children loved and happy, husband healthy . All is as well as well can be and my body feels it. My brain knows it. I am at peace….
Yet, still, tucked way back, behind the ease and the breeze, I can’t help but to worry about when the worry will be back.
The life of a worry wart.
I have just finished riding a pretty tubular special needs wave.
A Medicaid approval, my very first IEP experience, World Down syndrome Day, and a respite refuge application came crashing in and we rode it out without wobbling. We are 4 years in on this journey though, so surfboards do not easily capsize . My husband and I handled it all like bosses and we even learned some things along the way.
Here is what I know for sure:
1. Parents of kiddos with special needs are fierce fighters and unabashedly so. Never, have I ever worn a t-shirt to a concert I was attending, but you can bet your sweet self that I wore my “Advocate Like A Mother” shirt to my son’s IEP meeting. We are proud parents who aren’t trying to pick a fight. But, we are passionate protectors of the ones we love and we know firsthand how hard they need our safeguarding.
2. Parents of kiddos with special needs are some of the kindest people you will ever meet. Although the grizzly is within us, much like the good Dr. Bruce Banner, we wish to remain calm and unstirred. We need a lot of energy, we do not wish to waste a single whisper of it. And we empathize, my goodness how we empathize. We fill doctor offices with knowing smiles, we meet moms in grocery stores ,who have screaming children, and we authentically console. We understand tired parents, piles of paperwork, bad days, and friends who are unable to keep commitments. We only stare if we want to offer up a smile, only judge if we see cruelty, and even then we don’t hold grudges.
3. We know people stare at us. What seems like forever ago, we too did not know about special needs. We curiously watched others trying to comprehend a world so foreign to us. We understand that’s what you are doing. We know there is never malice and we get it. We also hear our child being loud in an otherwise quiet restaurant. We are quite aware that he or she is throwing an abominable tantrum. We know we look different. Do not be embarrassed for looking a bit too long as you try to get a peek into our reality.
Also, I can’t speak for all parents, but I kind of like it. You know the popular Dr. Seuss phrase “Why fit in when you were born to stand out?” This resonates. I never felt like conforming. In fact, I rejected it. But that rebellious childhood story is a different tale for another time. In any case, I enjoy changing perceptions just by being seen. And while I realize that sometimes when people see our family it may invoke pity or sadness. Some others may observe us cheers-ing our drinks or smiling wildly and think “what do they know that we don’t know.” Maybe their peek inside our reality won’t seem foreign or scary or sad but more like some beautiful, whimsical secret.
4. We are very aware that people with special needs are the greatest minority group, yet, they are the least supported and most under utilized. If people with special needs were formally recognized as a minority group, 10% of the world’s population would be living with a disability. According to the United Nations Enable fact sheet, that would be 650 million people. The World Bank also estimates the 20% of the worlds poorest people have a disability. So, imagine the frustration of families when Betsy DeVos made the reckless decision to cut funding for the Special Olympics. Please refer to things I know for sure #1. We are fired up. We feel slighted. We feel less than. And most importantly, we feel sad. Because it is everybody who is losing here. The special needs community creates a narrative of overcoming, of perseverance, of unconditional love and support. It inspires. It is in fact that whimsical secret. The Special Olympics was the spotlight shining on worth. Now I am afraid that the people who DON’T know already are going to be left in the dark without a flashlight. And, in the dark, without a flash light, well, that’s how fear happens.
You will not see those of us who love our community rioting, or retaliating , or even fussing with a vengeance. We will kindly remind you of our loved one’s worth by holding hands and wearing t-shirts. We will talk to our congressmen and sign petitions. We will share inspirational stories ourselves and pick up the slack created by our politicians….And we will band together in hopes that nice guys do not in fact finish last!
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.