I have been keeping a secret. A seven year old secret.
Except, maybe it wasn’t even mine to keep? Maybe I should have just come out with it way back then when I met him? Maybe I shouldn’t have over thought it and over drank it and endured so much solo heartache?
Maybe. Maybe not.
But regardless, I can’t go on living with so much weight, when all I have wanted to do for the last seven years was to unburden it. So I’m going to fill you in, tell you the good and the bad, let you know that we are enduring trials these days. I won’t share it all here, but there are parts I don’t have to hold on to anymore.
Ironically, at the same time that I picked up the burden I speak of, my worry, I also became kind of weightlessly in love. I was in love and burdened with worry the same day I met him, and simultaneously, absolutely smitten with all six pounds and eight ounces of him.
Our third baby was perfection.
He was the perfect size, had the most perfect cherub shaped face, and I swore, every ounce of him was a freaking miracle, from conception to the exact moment he came earth side with his wild tear inducing cries.
But let’s back track. Let’s just point out the fact that MOST times we have no idea what a person is going through. We can guess and we can assume and we can scroll their social media, pull apart their facebook posts and really REALLY analyze the quotes they share but I bet your bottom dollar you can’t guarantee what they’re facing on the daily.
Trust me. I know.
I lived it.
You would have never known unless I told you.
For seven years many in my close circle had no clue what health issues and crisis’s we have been living through. The doctors appointments we’ve attended and the specialists visits we’ve traveled to, all while navigating a health condition that still seems way over our heads.
I have sworn my entire life that I have been the type to pin my heart-waving-on-my-sleeve-kind-of-girl, sharing it all, and then, when my life and his were bound together, that ended.
Suddenly though, with his birth, there was an uncertain line to determine where his life started and my life began.
For a while when he lay deep within the heap of my looming stomach, I assumed he was more me, and the line sorta shifted. I hadn’t seen his face yet, didn’t know his gender yet, and his dad and I were still bickering over what name he would get either way.
And we were one.
There was no him and me, there was only a “WE”.
‘“We” were in a car accident today.”
‘“We” were having another doctors appointment on Wednesday.”
‘“We” were seeing another ultrasound specialist again”
‘“We aren’t going to make it to 25 weeks pregnant”
“We needed to be on bed rest from now on”
and then the best “We”???
“We made it to term!!”
You see, we were in a head on collision at 24 weeks pregnant where I went in to labour and HE dared to be born.
BUT together, WE stayed put.
Me on the couch and he in my womb.
The days were long and the worry list longer, but somehow we stayed as one for as long as we were technically suppose to and then seven years ago, in the small town hospital I was born in, my third child, my last “we” came into the world at the exact same time the tears of joy washed down my cheeks.
HE. WAS. PERFECT.
He had a tuft of see through blonde hair, so faint only his mama could see it, and he had adorable oversized eyes perfectly spaced in his heart shaped face.
His daddy named him Lucas, and his mommy was too madly in love to notice she didn’t get her way with naming him.
The doctors laid him in my arms and he was a “he” and I was “me,” and we were separate for mere minutes before he wriggled and squirmed his wrinkly tiny body onto my chest, where he latched and we were seemingly ONE again.
I suppose that is when the line became blurry.
Was our story separate now that we were apart?
I couldn’t be sure.
As all mothers say, having a baby is like having your heart walk outside of your body.
IT. IS. MAGICAL. But this new mother, me, was just about to hear the most confusing thing of her life that dared change the way she would hear that saying about motherhood.
Was the news mine to share?
Was it my story?
Was it happening to me?
Was it happening just to him?
There were so many questions and they all started after the doctor looked right at me and said confidently: “He probably won’t walk.”
BUT ALLLLLLL MOMS SAY: “Having a baby is like watching your heart WALK outside of your body!!”
How could that happen then?
IF he didn’t walk, then how could MY heart feel like that?
Wait. This isn’t about me.
This is about HIM.
What do I say?
What do I feel?
Who do I talk to?
Or do I?
I decided that maybe I should just keep this confusion close until I could figure it out. BUT ONE THING WAS CERTAIN.
Maybe I should just tell the doctors, with their forlorn faces, that they can take their downcast eyes and strut them right out of here AWAY from our presence! Because it was all too scary and terrible to be speaking right to a brand new baby LIKE THAT! I mused that he hadn’t witnessed his first sunrise or sunset yet, he didn’t know there was way more beauty out in this world other then the glaring lights and covered faces of an operating room and yet they just came in and gave him a terrifying life long prognosis. How could they give him such bad news so early?? I hadn’t even had the chance to tell him how perfect he was! HOW AMAZING HIS LIFE WAS BOUND TO BE!
I covered his ears with the blanket he was swaddled in.
That was it.
From somewhere deep within me, past the three layers of stitches on my stomach from my three precious babies, past the scars on my uterus and past my gut intuition, the God-given and forever holy Mama bear protective instinct in me came ALIVE.
I decided right then and there that I would do my very best to protect the heaving sweet bundle in my arms from ever hearing a negative prognosis about his abilities. I would shield him from feelings of shame and doubt. I would cover up those perfect little ears with my tired hands day in and day out and ONLY tell my darling, prayed for, fought for, wished for, pined for, child that he was enough.
And so I did just that.
I didn’t loudly share the doctors appointments or the meetings with specialists. I kept his story small and sacred.
In the past seven years I have STILL never figured out where his story begins and mine ends. I have been mindful, extra mindful, to bring limited negativity into his life. It’s something I knew I would one day not be able to change for him, but while I could, I would do my damnedest to give him the best story possible.
And, I would cover those ears of his whenever I could.
But NOW, he can listen.
He can comprehend.
The lines of our stories were separate for a handful of years, but they are getting intertwined again.
I have my life and he has his. He can tell anyone he wants, whatever he wants, and he will HAVE to. His condition has changed. He is changing. He is telling his story in his own way and needs to in order to have his changing needs met.
I think our stories have never been so separate, but ever since those early years, they have never been so intwined.
I have thought about this for so long, and now I know it’s finally time to explain chapters of his Life. Snippets if you will. Because he needs to be understood. He needs support. He needs prayers. He needs to fight for his health. He needs a community of others who have been through this in his corner.
We both do.
It is time to see that we both have separate stories, and they are ours to share.
SO here we goes my side of it all…..
From day one, with Lucas, his life and his story have been the biggest blessing. He gives me reason, grace, love and boundless JOY. His story, his resilient spirit and his unwavering happiness are inspiring. But it all has also been hard.
Our stories, yours and mine, of heartbreak and uncertainty are universal. I know everyone reading this can relate. My story isn’t unique and neither is my sons.
You have had hardships too. You’ve gone through times that you didn’t think you would make it through. You question God. Your faith wavers. You wonder WHY YOU. You get down and negative. You are frustrated and ungrateful. You are lonely and unsure. You wonder if any one else lives through the crap you are living through, and sometimes you’d like a little proof so you don’t assume you’ve just been given a bad hand.
I. GET. IT.
I’ve looked at my life and my sons and I have thought all of those things and more. I’ve also wondered what the lesson was? We are suppose to be learning something right?? These hardships aren’t for nothing? RIGHT?
Why else would we beat the odds? Why else would we survive a totalled car together? Why else would he hang on in that broken womb of mine until he was healthy and ready to be born? Why else would he survive and flourish after intrusive and extensive spinal cord surgery? Why else would he defy the limits our health care providers spoke of?
Heres the thing. Part one of our story is even more confusing. The thing most people don’t know about our family is that the uncertainties didn’t happen once our son was born. I just haven’t shared that story at the top of my lungs, but they truly began since day one. For the first TWELVE weeks I was pregnant with our third baby I had THREE ultrasounds that confirmed NO baby was present in my growing womb. My morning sickness told me other wise and so did my weekly blood tests that measured my HGC hormones.
And so I did what all mothers do and I promised God anything He wanted, if only He would give me this baby that we wanted to complete our family. I would never fight with my husband again or yell at the kids, I would never eat sweets again and I would volunteer and ABSOLUTELY give the lottery away if I won it.
AND THEN, after forcefully refusing a DNC, and at my lowest emotional point to date at the time, FINALLY at my twelve week ultrasound, my little soon to be Lucas, waved and fluttered and danced around.
And he hasn’t stopped dancing. Despite the odds.
Sadly we won’t be able to build him a proper dance floor until we win the lottery, and you all already know where I promised that money would go. 😉
But it hasn’t been easy despite the dancing.
At his birth, they noted, that the lower part of his spinal cord was tangled at the base of his spine. To the naked untrained eye, we had no idea. He looked just like my other babies. If anything, this babe was planned and prayed for so you better believe this seasoned Mama was popping prenatal vitamins and downing folic acid down the hatch to be extra careful. SO HOW ON EARTH could something be wrong with his sweet little back?
As a newborn, after an MRI, the doctors determined our baby was born with spina bifida.
It was a diagnosis that was a relief after they initially told us he had another diagnosis and needed a waist down amputation. Yes, you read that right.
AT four weeks old he had an 8 hour surgery to move the nerves that were tangled in his spine to where they should be. As a new mom, this news and the surgery we’re traumatic. But I can’t imagine how a newborn baby would have felt enduring all of that! YOU GUYS, he did so well!!
When we left the hospital a week later, a hundred stitches heavier, I asked what we could expect; “Would he walk now?” The specialist told us to keep our expectations limited.
But I am an optimist and optimists don’t keep their expectations limited!!
Instead, we optimists think of the best case scenario. We repeat affirmations daily, search the internet at all hours of the night looking for studies that prove only awesome outcomes and subsequently implement stretches, creams, ointments, and prayers from sun up to sun down.
And at our yearly check up at the clinic at McMaster Children’s hospital they raved that he didn’t just walk he RAN everywhere.
I haven’t taken this miracle for granted. I’ve go hundreds of “running pictures” on my phones through the years and I now cry every time I go to one of the kid’s cross country meet ups and see waves of children running with all of their might — with those determined scrunched up looks on their faces. I know not all kids get that opportunity.
I understand what their scrunched up faces are saying too.
ONE FOOT IN FRONT OF THE OTHER!
Our miracle baby was defined as a miracle baby at twelve weeks when he finally showed up in an ultrasound and then again, by doctors, for seven years.
And then, just like that, like a punch in the chest, this week, we discovered and confirmed, our worst fear. After a summer of many health issues and mobility issues. We determined our sweet, running, dancing little man’s mobility abilities were drastically deteriorating. He needs surgery again.
Basically, his spine has tangled up again after a growth spurt and it is worse than it was in the beginning.
We need surgery ASAP.
I say “we” but our stories are separate now and yet we are both going to have to go through the same emotions. This is a stressful time. A time where tears fall more often for the both of us. The surgery has a very small percentage of turning out the way we want it to due to it’s complications. But if we don’t do surgery, things will continue to drastically change negatively for our son. Things could be worse coming out of surgery too. We are talking about nerves here. Touching nerves and relocating them. The thought makes me jump and shiver. I can’t imagine how that would feel for those who have gone through this type of surgery.
His ears are not covered these days.
He isn’t protected from the severity of his condition.
He knows what is happening and has no control.
As all mamas do, I worry about his quality of life and his precious natural carefree attitude.
He is just a seven year old boy who really wanted to play soccer this summer and couldn’t. These days he rides a scooter around to alleviate the pain he feels in his lower extremities. For someone who has nerve damage now and limited feeling, I worry about how terrible the pain must be! There are so many worries.
But do you know what? My little cherub faced boy with the same tufts of blonde he had as a baby, just smiles through most of it.
He is resilient and his smile is infectious and he was purposefully blessed with an attitude where NOTHING can get him down. (Except maybe blood being drawn last week where he yelled “YOU’RE KILLING ME!!!! YOU’RE HURTING ME!!!!” for ten minutes straight while his emotionally exhausted mama and two lovely nurses held him down. We can’t all be perfect. 😉
BUT MOSTLY, he is the most happy go lucky, likeable little dude who just wants to make every day a party! He truly doesn’t let much bother him. And so, tonight, with another specialist appointment tomorrow and a massive double surgery pending, I am scared but I am GRATEFUL.
I am grateful that despite what happens, ’cause goodness knows these doctors are the best of the best and going to do their absolute BEST, that with his contagious positivity we can survive the outcome.
I will never stop shielding his little perfect ears and protecting him forever and ever AMEN, and holding back chapters of his story, but I am now advocating for him loudly. Looking for solutions, trying new therapies, rubbing his sore changing feet every night and I find myself telling him something I use to every single night until he was too big to wrangle on to my lap.
When he was a baby, I use to kiss his feet after bath time every night. After we had rubbed essential oils on them and done the stretches I had googled on the internet to quiet my anxiety, and I would say “These feet are going to go good places,” Then I’d grab his sweet chubby hands with the knuckle dimples and I’d put them in mine and I’d say “…and these hands are going to do good things!!” and man more than ever, I really believe THAT.
His story is his to tell in his own voice when he wants to. And there’s so much more to tell. But, right now, it is finally mine to share in hopes of supporting him more. I am sharing in order to create a community for him, to gain knowledge for him, to be his advocate, to explain his needs, and to maybe, just maybe, allow others who have health complications and their care givers, to feel like they are less alone.
OUR story has no ending, we are just at the beginning.
I know it is going to be a little like a mystery at times, and there are going to be chapters of suspense that would give Stephen King novels a run for their money, but most of all, this story is a LOVE story between a boy and his family.
One where they protected him fiercely, fought for him relentlessly, while teaching him there is so much opportunity, even if limitations abound.
A story where love and gratitude exude.
A story without limits and WITH lots of dancing.
MicheleSeptember 23, 2019 at 1:35 pm
You are an amazing mamma, your sweet boy is so blessed to have you. Thank you entrusting us all with his story. You know we will all be praying for him and you and your family for healing and strength. No one deserves it more xo
wilmaSeptember 23, 2019 at 7:20 pm
My thoughts and prayers are with you. May your boy continue to be strong, mighty and joyful.
SandraSeptember 23, 2019 at 10:26 pm
I’m praying hard for Lucas and all of you too! Much love ❤️
LaurelSeptember 26, 2019 at 1:00 am
In my heart and prayers…being a parent is not for the faint of heart!
heatherOctober 20, 2019 at 1:59 pm
I can so relate to your story. Our daughter was born with a congenital amputation (wears a below knee prosthetic) and a mild form of spinabifida. But she also has scoliosis and a tethered spinal cord – every growth spurt we would panic waiting for signs. I find that kids dealing with stuff like this have an inner strength that is incredible. I hope your little guy recovers well from his latest surgery!!!!