A Stroke of Luck, A Grateful Heart

When Jaxson was just a tiny new baby in the NICU, I used to wonder what life would be like where we are now.  I would sit in front of his incubator with both my hands pushed through the holes in it’s side tracing over his tiny “abnormal” features, my head spinning with what-if’s. I would try to picture his first steps, or the first time he called me mommy. I tried to imagine him playing with friends, or standing on a school bus step, new outfit and backpack, smiling ear to ear before embarking on his very first day of school. I tried to see him building forts, reading books, riding a bicycle. I even tried to imagine him as an adult. But I couldn’t see any of this.

At that time, I didn’t know how to picture a child with Down syndrome, even my own child, doing these things. Between having been incredibly unfamiliar with Down syndrome, and the huge binder full of statistics provided to me shortly after his birth, I had no idea what to picture my son doing. Spontaneous visions of him, unable to walk or talk or care for himself in any way, and myself worn down and gray haired, struggling to care for him made sporadic appearances. All I could hear over and over again was his neonatologist saying that he would "suffer mild to severe mental retardation," and in my tiny bubble of a world at the time, that seemed synonymous with an inability to function.

Luckily, like most every other mother (and father) who has walked in these shoes, I have long since realized that the questions and absurd assumptions I first had when Jaxson entered my world are now more humorous than they are relative.* The amount of times I have since scowled myself, silently apologized to Jaxson (and the world) for my ignorance, or smacked my forehead out of embarrassment for my initial thoughts is a number that continues to climb.

I have watched that tiny person in the NICU flourish. Not just grow, or merely exist, but thrive. Amidst stereotypes and statistics, I have watched his personality spark and develop into something fierce and independent. I have watched his determination carry him from one new thing to the next, and his stubbornness guide him at his own pace as he acquaints himself with the world around him. I have seen him struggle to learn things that come easier to others and have heard far too many cries of frustration as his muscle tone limited what he wanted his body to do. I have seen him pushed beyond his limit in therapies, or doctor’s offices. I have watched him endure and conquer so much more than I ever could have imagined back when I held his tiny hand as a doctor confirmed his extra chromosome.

And he’s only 18 months old.

The future I now see for him is as bright and fulfilling as it was the moment he entered this world, before his beautiful almond shaped eyes were noticed and fear crept in. I now imagine him accomplishing so many things in the future, that I often have to remind myself that he will make his own decisions and excel at what he chooses to love, regardless of what I hope he loves. I have learned through many battles with him already that he, and he alone, will decide what he wants, when he will accomplish it, and whether or not he will continue to do it.

There are many moments within many days that I spend regretting the grief I felt throughout his first weeks of life. How I imagined both his future, and mine, coupled with a what-did-I-ever-do-to-deserve-such-a-life-for-my-child attitude, is something I wish more than anything I could take back, though it is a part of the journey that has gotten us to where we are now, and where we will continue to go.

Shortly after Jaxson was born, I spoke to a geneticist in regards to how I managed to produce a baby that was given a 1 in 1400 chance of being born to a woman of my age. He told me that Jaxson was a “fluke,” and that it shouldn’t have happened. At the time, I found comfort in the word knowing the chances of “it” happening again were incredibly rare. But now I wonder, if any mother of any child, extra chromosome or not, were told that her child’s existence was a fluke, shouldn’t she be proud, grateful even? A fluke is not only an unlikely occurrence, but is also defined as a stroke of good luck. I feel as though I should have thanked that doctor, not for the comfort he brought me then, but for the beautiful way he unintentionally used that word.

When I think about how statistically close Jaxson was to not existing as I know him now, it brings me more sadness than I ever felt those few weeks after his birth. What I did to deserve such a sweet and beautiful fluke, I’ll never know, but I am immensely grateful for my stroke of good luck, and the perfect tiny soul it has brought me. 

*In no way am I saying that any degree of intellectual disability is humorous, but stating that my complete lack of education in regards to Down syndrome after Jaxson's birth is something I now find comical. 

I wish I could say that I've been too busy for blogging, but I haven't.

Instead, I've been lazy. The lay-on-my- couch-all-day-and-watch-murder-mystery- documentaries kind of lazy... And I'm not proud. 

But, as I'm currently going on my twelfth hour sitting in a vehicle with five other individuals, I've had a lot of time to think, and thus, find not only the inspiration but the criteria to write about. I've been stuck in this stay-at-home-mom haze, fighting with myself to get bikini ready (though its now June... Oops) and also fighting a (hopefully) teething Jaxson. At nine months old and the past month full of insatiable and near constant whines and screeches, my fingers are indefinitely crossed. Nonetheless, thank you Baby Sign Time for stepping in and soothing him when my nerves are shot. You are a gift from the heavens. I just wish I didn't find myself constantly singing songs in public (when I'm baby free mind you) about signing for more milk and how 'mom has a mom.' But I can deal.

Anyway, criteria:

Besides potentially teething, this past month has been a developmental powerhouse for Jaxson. And I am in awe of him. 

It started with rolling from his back to tummy. He fought and fought both I and his therapist with tears until we'd throw the towel in and pick him up, assuming it was too soon. Then suddenly, after refusing to roll yet again for a toy, his therapist began packing everything into her bag as our session came to a close, when Jaxson, as if he'd been doing it for months, reached for the bag and smoothly rolled to his tummy. And then he did it again and again and again. Just like that. 

But it gets better.

That same week, he decided he could also sit up on his own unassisted. And so he did. After at least a month of having to force him into a siting position (because he so loved to stand assisted, and only to stand) he sat for minutes on end playing his baby piano while my hands waited nervously behind him. All this in one weeks time.

Then came holding his own bottle. Oh how I've waited for this one. Not because I don't enjoy the intimacy of holding him close and staring into his baby blues, but because he's still taking a bottle every 2-3 hours and momma could use some down time once in awhile. 

But this is my favorite part.

Mimicking. I've heard what age babies should be doing it, but as a natural habit now, brushed it out of my mind and simply waited. 

Behold, the first time I sit (yes, sit... Still in amazement) Jaxson in his kiddie pool and splash my hands in front of him, he follows suit. And so bath time was then brought to a new level. Mom-should-wear-a-poncho kind of level.

But then came the best mimic, or funniest, yet. The raspberry. I had spent nearly two weeks blowing raspberries at Jaxson simply to watch him giggle and try to snag my tongue away. I was happy with just that... Until he blew one back. Thinking it was an accident, I blew another. He copied me, and so we repeated until I sat back, full of amazement and tears.

After nine months, this was a new glimpse into this little person of mine. A glimpse of intelligence and personality. He now blows raspberries when he's done with his bottle, every time we try solids (which we still have no luck with), and sadly yet hilarious, when we give him kisses when he's busy playing. 

My baby will be graduating high school next year, ladies and gentlemen. This momma is a happy sappy wreck. 

Now back to hoping we reach bonnaroo music festival soon! We've finally hit Tennessee! 

For never before in story or rhyme,

(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again.

Oh motherhood, you have turned me into a sappy, tissue carrying, cry-over-children-books kind of woman.

This book.

Let's slow it down a little.

What I want to do is sit here and cry on and on about how I cannot believe Jaxson is already seven and a half months old and reinforce again and again how tightly I'm holding onto his little hands in hopes they'll never leave mine. I could go for days, crying and laughing in complete and stupid shock that babies do in fact... grow. It's just the strangest thing, I tell ya.

I've been sifting relentlessly through the photos and videos on my laptop, trying to find some kind of order.... only to remind myself of how quickly time passes:

                               

That sweet and tiny little cry... he was barely two weeks old! (Curse that machine beeping in the background, the amount of heart attacks it caused me is countless.)

There's nothing quiet about his cry now. He's babbling and fighting off naps and yelling at me whenever I walk away. His newest thing is refusing to stay seated when I place him in my lap or on the floor. He pushes off with his feet and tries to stand; if I don't hold him up, I get an earful. He's suddenly very bossy.

We've been experimenting with solids as well, to no avail. HE HATES EVERYTHING. I slave over batches of homemade baby food only to see a grimace and globs of food sputtering back at me. After speaking with a feeding specialist, we've decided to give it a break though, before he begins to resent everything that isn't a bottle. Instead, we've decided to include him in our meals and offer tiny tastes of appropriate foods on our finger tips. I'm hoping it will help him to understand the correlation between food and hunger, and offer him a wide variety of tastes without being overbearing. I won't lie, it broke my heart a little when he didn't like avocados. Hopefully he'll learn to love them as much I do! Along with vegan food. But again... not going to be overbearing....

On another note, Jaxson had his tubes put in last week! Aside from having to spend an hour and half before surgery distracting him from his hunger, it went beautifully. He was in and out quickly, all fluid drained, and after another BAER test, we were told his hearing is just fine! After failing all of his newborn hearing screens, I was a tad bit nervous he could not hear properly. There were incidents these past few months that made me wonder, but now I know it's all been selective hearing. Wow, do they start young. Now I'm hoping to see some improvement in his balance now that the fluid is finally drained. And I'm wondering if his babbling will get louder too, now that he can hear himself more clearly.

But speaking of milestones, or better yet, Jaxson's accomplishments, he's now sitting up while using his hands to balance! He's a bit wobbly, and according to his therapist, he shouldn't spend too much time doing it or he'll learn to depend on his hands instead of his trunk, but nonetheless, I was proud to see him manage it! He's rolling front to back more often now, and quite easily, but he refuses to roll from his back to stomach. He's so very close though, and I'm holding my breath because I know once he manages to roll both ways, he'll be all over the floor. And then will come crawling. And walking. And running. And middle school dances. And high school graduation. And me crying even more.

Anyway! He's incredibly curious. He watches and touches everything. Especially hands and faces... he'd rather play with your fingers than anything else. And I think his favorite thing is to be stood up on your lap so he's face to face with you and can touch and grab your cheeks, lips, eyes, hair... you name it. And he'll giggle and give kisses and pinch, pull, and talk talk talk. His eyes so full of the most innocent wonder.

His coordination is improving greatly too! I love to watch him grab for toys, or pull his pacifier out, look at, then stuff it back into his mouth. There are times however, where a toy is right in front of his face, and he tries so hard over and over again to grab it, his little hands a little too far right or left, his brow furrowed and his mouth shouting in frustration at the toy. I love to watch this learning process. When he finally manages to catch the toy he bounces in excitement and brings it right to his mouth. And I'll think to myself, I never thought something so small would make me so proud. 

How true is that. At this age, I had planned on graduating this semester, and spending this summer in Europe, exploring new places and finding myself. Basking in my youthful ignorance and adventure, making the kind of memories I'd look back on one day and say, "I can't believe that happened." Then I would come home and search for a job in a far off and trendy city, where I would write books in coffee shops and fill my days up with lattes and boutiques.

Instead, here I am. Wrestling a seven month old to sleep, making baby food, losing sleep, scheduling therapies and doctor visits, learning baby sign language, googling things like 'how to help constipation in an infant,' sucking boogers out of nostrils, cleaning puke off of my shirt, or his shirt, or the carpet, or swing, or countless blankets, feeling gums for baby teeth, filling out baby book pages, wearing the same jeans everyday because how could I NOT buy that cute outfit for Jaxson instead, skimming by in a tiny and deeply loathed trailer....

Yet, in a way, here I am doing what I had planned: Exploring new places and finding myself. Europe will always be there, but these sweet baby kisses won't last. There's something about the way Jaxson smiles every time he sees me that makes what I had once wanted for myself melt away. There are days that leave me exhausted, overwhelmed and frustrated, and I wonder how I came to be here, so far from what I had expected. These are the days that leave me feeling old. As if at 22, my sense of adventure has been snuffed out, my youth replaced by worry and fears.

But that smile. The way he gets so excited when he catches me watching him. Or how my arms and voice alone can soothe his tears. Even on my worst of days, when I feel completely stuck and helpless, he still lays his little head on my chest and snuggles closely, babbling softly, his little hands playing in my hair until his eyes slowly close.... and then I know: One day, I'll look back on these days and think to myself, I can't believe that happened. And I'll swell with happiness and nostalgia.


Well, this post has certainly gone in a direction I hadn't expected. I had just planned on giving some details like, Hey, Jaxson's thirteen and a half pounds now, and 25 inches long. Isn't that such a change from his four pounds four ounces and sixteen inches at birth?! 



Okay... end ramble now.

When you pick a little baby up.

When you grab them around their middle and gently lift up, and they arch their back and bend their legs up, and bring their arms up to their head and even sometimes grab their faces. They squeak and yawn and stretch... But still stay soundly asleep.

Those are such sweet moments.

You were born into a strange world.

Like a candle you were meant to share the fire.
I don't know where we come from, I don't know where we go,
But my arms were made to hold you, so I will never let you go.
'Cause you born to change this life,
You were born to chase the light.

Mesmerizing eyes. Those brushfield spots...

muah. <3

Someone finally discovered his feet!

His 'thinking' face.

I just can't get over those eyes.

Perfect.

He has one dimple. Only one. It just kills me with cuteness.

Even his cry face kills me with cuteness.

Look at that head control..


Just some quick baby spam! Happy almost weekend!

The Things People Say.

Almost daily, I think, I am baffled by the responses I often get by strangers when it’s mentioned that Jaxson has Down Syndrome. It might be bad of me, but at times, I almost have to choke back laughter at some of the responses.

And anger, too.

Just the other day, two nurses ogled over Jaxson at my grandmother’s house while they set up some equipment to keep her congestive heart failure at bay. When I mentioned that we had to start packing up or we’d be late for therapy, they were shocked, “Therapy?! For what?” I then explained that he had physical, occupational, and feeding therapy sessions, to which one nurse responded, “All because he was a premie?”

I felt something weird inside at that moment. They didn’t notice? Was it wrong of me to feel a touch…I’m struggling with a word here. Something along the lines of relief or happiness or maybe a little shock. Anyway, it was all wrong to feel.. but it still happened.

I couldn’t contain my smirk at this moment. I knew what was probably going to come, “No, because he has Down Syndrome.”

Nothing of significance followed immediately. Except my senile grandmother, (whom I’ve kept it a secret from only because I liked that she was the only one in the family that didn’t look at him and see the characteristics. She loves his features and tells him every time she sees him. It makes me swell with the most happiness, and usually, tears) whipped her head around and shouted, “Now who said he has that? Tell that doctor to pull his head out of his ass, he ain’t got that.” Oh, how I love that woman.

A few minutes later, the younger nurse, still in the nursing program actually, approached me and told me again how adorable Jaxson is. We chit chatted about all of the cute things he does, I bragged, ect. But then she said this (essentially, but I’ll quote it nonetheless):

“When my daughter was eight years old, I loved it. It was my favorite age and still is. One night I told my husband this and he said that it was too bad she didn’t have Down Syndrome, because then she could be eight forever.”

This is a medical professional in training. Jesus.

Anyway, then she went on to speak about the innocence that people with Down Syndrome have. How they’re immune to the bitterness of the world, on and on… I, along with any other parent walking this path, have heard these statements a million times, I’m sure.

(Side note, after reading about the young man with Down Syndrome who was just asphyxiated by police officers, and not to mention a few other heart wrenching news stories that all deserve much more press than they’ve gotten, I can assure anyone, no one is immune to the bitterness in this world)

But I guess, my reason for writing this blog is my own confusion. How do I handle these situations? I’m still stumbling around this new path. Do I take pity on people like this? Nicely explain how wrong and ignorant they are? Do I jump down their throats and clearly take offense? Don’t they deserve that? To know how hurtful their words are? Should I even care… does it matter?

I think it does. Like all great things that change within this world and bring about a new and positive perspective, and better treatment, it started with someone somewhere trying to change a viewpoint.

But how do you change it? Or educate, I suppose, is a better word since change takes education.

My first reaction in the above situation was offense, but I didn’t make it known. Just felt it. And for some reason, I laughed with her after she said it. Why did I do that? I’ll chalk it up to shock. I re-play it in my head and try to think of ways I should have handled it. Sometimes it involves me grabbing her by the throat and shaking… but I figure that won’t educate her much. Do I blatantly say, “that’s a very rude thing to say?”  

I think it’s best to just let people know, “hey, my son won’t be eight years old forever. He’ll be a valuable member of this society, capable of all emotions.”

I should have just said that. *Slaps forehead in disbelief. I think my issue is that I’m constantly overcome by shock, and lose my footing. I need to get past that.

Situations like the one above happen much too often.  And I’m still tender and vulnerable; I want to be rude back to people, yet sometimes I want to burst into tears. How dare you, my son is perfect. Neither of which will solve anything.

I just need to find my footing on this path. I need to find solid ground and a strong tree to hold onto. Jaxson needs more than a hesitant “vulnerable” mother, he needs an advocate.

Grandma, I think I’m the one that needs to pull my head out of my ass. (And a vast majority of society as well)

Any suggestions for handling these situations? Any responses you made that had an impact? Any times you lost control and jumped down someone’s throat? Am I wrong? Tell me your stories. Educate me.

And just for good measure:

the way's he sleeps.