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.
They swirl so fast, these holidays of ours; funny, endearing and frustrating. Each one building on the last, forcing us to wonder about which was our favorite and how we can ever recreate it? They all matter though, even the shitty ones. They are all there to bring something to that doily decorated table.
Like the ones I spent alone cursing the holiday as a ploy created by Hallmark.
Or the ones where I was allowed a boy/ girl party in our humbly finished basement as I carefully hung an obscene amount of paper hearts from the ceiling . I clearly remember curling my besties hair and the feeling of pre-teen anticipation.
There were the my first ones. The ones where I’d read my cards over and over for hours, treasuring how I was so lucky to be so loved…..Knowing little about the class requirements of inclusion.
There were the obligatory ones, where I mentally muttered “shit I’d better stop and get a card.”
There were friend ones celebrated at a bar.
And Dinner date ones.
There was the one I knew would be my dog’s last.
There was That one crazy Florida, hospital one when Judah’s festive pink eye resulted in a trip to the ER and script for antibiotics.
I’m sure there were boring ones I don’t remember.
There were the ones for the kids. The ones that didn’t include French kisses or lingerie but may have included heart shaped French toast?
The truth is, my favorite was probably the hospital one. Not because it was awesome. In fact, it was awful. 24 hours in a car with 2 small fries, one sick. … And just as we were to arrive at our palm tree destination, the palm trees waved bye bye . It was sucky. But it was memorable, it made me grateful and I was with the ones I loved.
But the other ones did something too…..
Like how the ones I spent alone taught me that I am able to survive being alone.
And my boy/girl soirée taught me how to be a proper host.
My love for those little cards taught me how important it is to give them.
The obligatory and forgotten ones taught me how I cannot always compete with everyone else’s highlight reel ….because sometimes my insides just don’t match others outsides ( thank you author Anne Lamott)
The friend ones taught me a lot about being there for each other and the dinner ones taught me the important simplicity of a meal shared.
The kid ones have taught me to re-see holidays through their eyes bringing me back to the days of my first ones. Coming full circle the way that life seems to do.
And maybe one day I’ll have a really rough Valentine’s or Christmas or Flag day. And maybe one will be one of the best days of my life. Maybe a handful will be just like any other day?
But what is key is to get lost in the beauty and the hard and mundane in all the funny days we are given. Because with them we become more us than we were the day before. With them we carve rings in our tree. With them we gain wisdom and clarity and humor and sadness. With them we gain character that lets us tell stories to who ever will listen about our funny Valentines’.
With them we live wholly…. and that, is cause for recognition. So, here’s to a significant Valentine’s, no matter what it looks like.
“There are several ways that animals respond to winter: they migrate, adapt or hibernate.”
Last year at this time I spoke of the way I was tangled up in all of the ways that Christmas had me high and low ( read that post Here) In summary, I reveled in the magic and suffered as I had to let it go. This year You may find me waving a middle finger bye bye to the season.
I’ve analyzed and reanalyzed my different point of view this year??? It’s what I do. I take my feelings like a sopping wet wash cloth and I wring it metaphorically dry. I’ve come up with a few possibilities. They range from having a new enchanting baby last year to the demands I have this year? It could be my job where the magic must also live as I mold minds of impressionable 5 year olds and therefore sap it from my life at home? It could be my two very own little time stealers who beg for every bit of my being? It could be rampant family sickness, or seasonal affective disorder? It could be that the trauma of Christmas past, where only health mattered, is fading and I’m back to taking for granted? Maybe I came in too hot with the all holiday music or it could be how I threw multiple grandiose soirées that took their pricey toll? Maybe I am unconsciously sad it’s over and am disappointed I didn’t make it more grand? Maybe I’m just fucking tired and I cannot care enough this year no matter how hard I try to will it so?
But all my analyzing and wringing and trying to fix and worrying that the spirit may evade me forever, doesn’t change the fact that I am sullen, I am over it and I am welcoming a form of hibernation.
I have always found it weird that we are the only species that does not alter its routine in response to the weather. We get the same sleep, do the same work and fulfill the same expectations. I cannot very well tell my boss, children or students “nope, sorry, this winter I am going to Florida, lessening my work load or taking a long ass nap.” Could you imagine though? Binging on all that Christmas decadence then sleeping for a good few months?
But we cannot. We must trek on. I don’t know about you , but I still need to replenish. It is time for me to take to all my unread pins about self care and gratitude and simplicity. The excess of society is a skin to be shed and I need to molt.
You will not find me with overlined lips and eyes. My weave will be unclipped and my trendy attire retired briefly to the back of my wardrobe.
If you need me, search for the clean faced girl, wrinkled and worn. Look for green tea and Tabata. You can find me under a cozy blanket, in yoga pants and hair in a pony. I will be centering. I will be searching for my gratitude that somehow has gotten lost in the hustle and bustle of a season that escaped me.
And let’s not get it twisted. This is not a shift I welcome, like a resolution. It is a necessity. My voice feels like a whisper, my prayers are weak and my gratitude shallow.
I want the love back. The deep kind. The kind that makes me ache with thankfulness and awareness of blessings. That takes work folks.
So like many fuzzy creatures I will rest and awake hungry in the spring. I hope to be hungry for celebration and stilettos. But for now, I “sleep” so, please, don’t poke the bear!
Hi it’s mommy, professing her unwavering love yet again. I wasn’t sure how to write this birthday post to you because, well, I wear you proudly on my sleeve daily. I think the whole world knows our love story and how it was born from pain. I’m pretty sure the universe is aware of how big our love is. That way my shame for being scared of you morphed into an incredible explosion of devotion and advocacy. You’ve been called “my favorite” by many and I’m sure even more think it. Although, I love all you babies the same, I do feel I owe you the most. Call it disgrace for my early feelings or my innate need to help the world… but, either way, I don’t think you need another post about how crazy I am for you. I think you are wildly aware of how much I value your life, and I am certain you can feel how your short 3 years have made me such a better version of myself.
I thought instead you may enjoy what others have said about your enchanting little soul over the years:
“Omg! He is so darn adorable!”
“Every time you post a picture or story about him, I find myself smiling. He’s absolutely beautiful and perfect.”
“Beth, I have to tell you that as an Uncle to a nephew with Down Syndrome who is 22 years old, I know that Judah is adorable!!! I love seeing your posts about him and his pics!He has the Greatest Smile and I know why you love him sooooo much!!”
“Every time I see him I just want to smother him in kisses and hugs.”
“A couple pieces of advice:
Keep dreaming big for Judah. Whatever it is you’ve imagined for him and his life, keep dreaming it. The possibilities for Judah are endless and I can absolutely guarantee he will amaze you, your husband and Calvin over and over again.
Judah is simply beautiful. And I’m thinking of you all. Two weeks in and you’re doing exactly the right things. And I’m certain this will continue. And when there are questions, there are so many great resources and people out there to help. Judah’s life will be amazing. Congratulations again to you and your family. ”
“Whether it was a doctor or a school CSE or a complete stranger just know that NO one can ever take away Judah’s worth or the unconditional and unsurmountable love that you will always have for him and that he will always have for himself and everyone he loves! That one rule of thumb has gotten me through a lot of scars and bends in the journey. He is who he is no matter what anyone or any diagnosis says he is, always has been and always will be, my boy. Judah is your Judah!”
“Love those smiley eyes!”
“The world is gonna love this kid…”
“He’s so carefree. It makes me want to be like that!”
“His happy makes me happy. I can feel it from here.”
“I believe in you!”
“All I can say is runny nose or not this soul has made my life a better. Following your family in this journey has be an amazing adventure. God put you all together for this reason , you make it all work out to his advantage . You are my hero and so is he.”
“Always love to see his constant excitement and happiness. ”
“He’s just adorable. I think there is a resemblance between all your boys”
“With all the love we give to this ” Wonder Kid” we still will never be able to give back to him what he gives to our family. Judah thank you for being such a very special part of it.”
“that smiles just makes all bad stuff melt away”
“Judah is 10000% the boss of me. That charm, those sloppy kisses, his fierce will and the strength he has, all make me want to be a better person! We all have those kids we just ‘click’ with and from the moment I held the soft little fluff nugget I knew….I would never stop being Judah’s cheerleader and advocate. ”
Bub, there a million more messages just like this. I have barely scraped the sentimental surface. Countless people have mentioned your ability to change their outlook and even more people have shared stories with me of their strife. They felt brave enough to tell it because of you. People approach me just to talk about you… and both friends and strangers swarm to see your little personality in action.
And Bub, there’s something else I need to tell you…. I don’t want to bear the bad news but I’d rather you hear it from me first. There are people out there (ones who don’t know any better) who think you are not worthy of life because of your teeny, tiny, extra chromosome. Well, sweetheart, if you are ever unlucky enough to find someone who lets a little chromosome outshine your big important life? ….Then I pray you find this post and recall all these incredible things people said about you before you were even on this planet three years!!!! It’s incredible you know? The work you’ve done to change things in your short little life? Don’t stop!!!! You are such a special person with a rare gift…… the gift to set the world on fire. Happy birthday Juju you are loved so fiercely.