To the Doctors Who Favored Science Over Humanity When Delivering Our Son's Down Syndrome Diagnosis

429
429
0

It all begins exactly the same, and I’m not sure whether that makes me want to laugh or to gnash my teeth to cracking point. To snicker or curse, thrust a finger in the air with vigor or shake my head in disbelief.

All. Exactly. The. Same.

It’s that magic two lines on a plastic stick, or (hey! better!) real words like “three weeks.” And it’s then that you know. You know there is someone growing in there. It is precisely the same bliss, an identical uplift, an equivalent joy — when you are about to burst from every pore with every imaginable emotion at once. You are about to become a parent! You’re having a baby!

The very same.

That someone in there, for the most part, he grows the same. He affects you the same as any other. You wake up one day and feel so knackered you cannot see straight. You cannot eat anything that doesn’t contain ginger, or peanut butter, or chili sauce or jellybeans or whatever your slowly bloating stomach demands. Your nose becomes bionic. Your muscles pudding. You find yourself walking to the tube after work with your eyes closed, shuffling down the side of the road to the station, visionless because you know the route and you know the number of steps and you know that once you finally get to that platform you can pretty much fall straight into a seat, whack on your headphones and keep those eyes closed still for a solid hour. If you sleep, you’re magically out cold until the stop right before yours — it seems the mommy intuition begins at the same time as well. Because precisely at your very own stop, like magic, you awaken but still only partially, because you cannot function properly — there is a new life in there, for whom your body weakens because you must sacrifice your entire strength for “it” to become “him.”

The same.

The first few months of this whose-body-is-this-because-I-cannot-possibly-be-this-knackered gig and one day you wake up and lo and behold you find you’re feeling better until you actually try on your jeans. Then you feel like utter crap. You won’t be able to wear them again until much later, so get shopping and you’ll feel even better. Everyone does. I promise.

But really the main reason you feel good is because you’re not in those early days anymore; you’re in a place where “new baby” is no longer settling in and sucking every last ounce of strength from you, because you have hereafter made an unspoken mutual agreement. This one says, “hey kid, I will love you and nurture you and cherish you and treasure you until both our dying days, so ease up already, hey?” And you already “get” him, because he is your son. Already your son. That love, too, is the same.

Precisely the same.

Then you go on vacation — that last one before he formally comes into life, because you know there will soon be a time when your adventurous his’n’hers explorations are no more, that you are now three-to-be and when you have a kid to look after, your time will never again be your own. And you will have to baby-proof everything. Right down to the rental car. Bungee jumping and hang gliding are to stay on the bucket list. Hell, you even feel a bit soggy on the Roger Rabbit ride in Disneyland. You’re pregnant. It’s the same.

But just before you left, it all changed.

They ran some tests. They found something that made you and your experience suddenly become “different.”

And they took it all away.

Until recently, this life, this progression, this expectation, well these things were all identical to every other pregnancy. The ones that become routine.

But.

There came some tests.

There came some results.

Some frowns.

Some statistics.

Some numbers.

Some labels.

Some things which made this pregnancy, your baby, no longer routine.

And they took something from you. They took your Joy and replaced it with Fear. Like a home invasion. Ripped from you like a gold chain from your neck. Broke into the safe and crept off with everything you had locked away and protected.

They took something you can never retrieve. They took it robotically, from behind spectacles made of What-if. Charts and graphs and measurements that said “femur x, nasal bone y.”

And from that point, that very minute, that phone call where she says, “Oh lots of people have that ‘risk’ figure, I’m sure there’s nothing to worry about.”

Are you?

Are you really?

Care to join me in my bed til 3 a.m. from here to eternity?

And please tell me when did “son,” “child,” “baby” turn to “risk”?

Stole it. Snap.

Then everything you were feeling, wanting, hoping, expecting, is speared through with negativity. Perhaps not with their direct intent but as luck would have it, the science got in the way of the humanity, and then suddenly your baby, your child, your son, became a “problem,” a “risk.” Pregnancy, parenthood, joy, became faint memories. And you stopped taking bump selfies but only wanted it over. You wanted nothing more than to have your child and to get the hell away from the thieves of your happiness. You continued to value him despite what you were told. You grew fangs. Tiger mom was born long before your son joined her.

You were ripped from your plans so severely that the letter you began writing to your unborn son would never be completed. You put off all the home redecoration until the bitter end because you would never again believe there would even be a child, let alone a healthy child. There was “risk.” Surely there would be “disaster.”

(There wasn’t.)

The nursery would remain half-decorated and slightly cluttered until that child, that son, was here and was home and was yours. You could not rewind the time. You would never get that back. Like throwing a stone into an abyss, it wouldn’t even give you the satisfaction of echo.

(And that nursery would not be “right” until you moved home and your son had lived a full three years.)

But then he was born and he was amazing.

(Wait…what?)

He has grown and thrived and been such a complete opposite to the predictions.

(No… really?)

He has returned to you what they took — not because he had taken it back from them per se, but because they could not take what was in him and who he actually is.

Yes. Yes. Yes.

They never did know who he actually is. Perhaps that is the greatest tragedy of all. Perhaps more so that they never will.

(Here it is. Learn. Please.)

Four years later, these memories still burn. Like a stick jammed into a hornet’s nest. A magnifying glass on an ant hill. They scar and they fester and they do not go. Because they have taken a moment we cannot have back. They have stolen an experience we are never going to be able to re-live. Our first. Our only. Stolen.

Doctor, why did you take our joy and tar it with sorrow, based on “maybe”?

Doctor, why did you determine that a genetic difference completely negated the pleasure and the essence of our entire journey?

Doctor, why did you turn our expected new child from someone into something to fear?

Doctor, why did you ask whether we would rather risk losing him to an invasive test than to continue knowing he may be (in your opinion, not ours) “flawed”?

Different, yes. Flawed, not on your life.

Do you know, doctor, the damage you can cause with the weight of your words?

Do you know, doctor, that despite your budgetary constraints and your paper trails and your revolving door of “normal” pregnancies to look after, we remained human, we remained feeling, we remained in love with our unborn son?

Do you know, doctor, that your heavy words crushed a piece of our hearts?

Do you care?

It is said that with great power comes great responsibility. And there you had the greatest of power. In a place where we as prospective parents were feeling vulnerable and weak, nervous and excited all the same. Desperately lucky to have finally conceived a child after trying for so long. There you had a chance to find and present positivity in this strange new world we were facing.

But you blew it.

Doctor, you really screwed up.

You had an opportunity to help us rejoice in this new life. We were doing that already, but you took it away from us with your frown and your supposition. You stole it. You blew it.

You should have started by asking us how we were feeling.

baby in tube in pool
Rukai in the pool.

You should have looked at us and seen the glow in our eyes.

You should have asked us what we would name him.

Rukai. Rukai. Rukai. He is 4 now.

He is mighty.

He is not Fear. He is not Problem. He is not Worry.

He is Rukai.

In the very same way as was for us, as long as you practice medicine you will meet other expectant parents for whom you can either be a guiding light or the memory of darkness. There is no second chance at welcoming new life.

With great power comes great responsibility. Own it. Earn it.

He is Rukai.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

429
429
0

RELATED VIDEOS

JOIN THE CONVERSATION

Why I Talk About the Grief I Felt When My Baby Was Diagnosed With Down Syndrome

116
116
0

I’ve written about grieving my daughter’s prenatal Down syndrome diagnosis before, but I haven’t written why that grief was important for me. I haven’t shared what drove it or how I view it now.

That grief was born of what felt like the world crashing down around me. When I heard the diagnosis and all the worst-case scenarios, all I could hear is that someone took the path I’d imagined for my child. In that sterile, medical environment they left her in a small circle, defined by an outdated book, her almond eyes and low muscle tone. A spot defined by limitations instead of potential.

I grieved over the challenges she would face and over the intolerance she would undoubtably encounter in this world. As a mom, I want to take away my children’s pain and soften their landings. I want to take any intolerance and wrap it up and hide it from them so they never see it. I grieved because I knew I wouldn’t be able to shield her from hurt forever. I grieved because I knew she may have to work harder for everything than I’ve ever had to.

It wasn’t until I found blogs and met families further down their paths that I saw the circle she was placed in expand, slowly becoming the winding path she’s proudly bear-crawling down.

little girl with pigtails and purple tutu
Sydnie’s daughter, Everly.

But when we don’t talk about our sadness, it makes it isolating and a source of shame. It took me almost two years to embrace my initial grief and stop being embarrassed by it. It took a lot less time to move past the grief and embrace the joy, because the joy was a quick Google search and a tight-knit Down syndrome community away. I believe when we stigmatize grief, we hinder progress.

When I share my stories of my daughter Everly, they are filled with hope and humor and love. But to get the whole picture, you need to see that it started with darkness for me. I look over at her now, standing independently and concentrating as she hesitantly takes one… two… three wobbly steps before she falls down, only to stand back up with determination and try again. I navigated her diagnosis much the same way. Slow, wobbly moves out of my grief, determined to find our path again. And just like I know she will soon be confidently striding and then effortlessly running, I found my stride out of the darkness onto my path of joy.

I choose to no longer be ashamed of my initial grief. That grief made me stronger. It forced me to search the depths of my soul, and it makes me fight that much harder for acceptance. But it also exposed a raw, emotional side of me that has made me love harder, appreciate more and ultimately made me a better mother.

Follow this journey on Happily Everly After.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign-up for our Down Syndrome Newsletter*

116
116
0
JOIN THE CONVERSATION

The Song I'm Asking One Direction to Write on World Down Syndrome Day

510
510
1

Dear Harry, Niall, Liam and Louis,

Today is March 21. For most people it may be an ordinary day. But for our special family and thousands of others around the world, this day marks an extraordinary day of celebration. It’s World Down Syndrome Day! It’s held on March 21 because individuals with Down syndrome have three copies of their 21st chromosome. It’s about spreading awareness in being different and unique. It’s about showing the hope and beauty behind the everyday challenges kids and adults with Down syndrome face.

I’m not a spokesperson for any organization. I’m just an old-timer 35-year-old mom and a huge fan (with two fan daughters and my 3-month-old is definitely going to be soon!). I wanted to ask a heartfelt favor. Please consider writing a song dedicated to celebrating people who are different and special, whether it’s Down syndrome or any other need.

Mother with daughter with Down syndrome

I’m more than a mom, you see. Four years ago I took on a secondary role of being an advocate (a.k.a. “Wolf Mom”) for my daughter when she was born with Down syndrome. Please make my job easier as I raise her. The comfort of your beautiful voices and words would compare to the most powerful and picturesque book in the world!

The “story of my life” has had many challenging days. I never thought the word “celebration” and Down syndrome could be uttered in the same sentence after we learned of our daughter Jayda’s diagnosis. Would she be successful in this world? Will she be treated fairly? What can we do to make her better, even the best, in her life? I’m trying to answer those questions every day.

I want to share this story with you. Words are so powerful — both hopeful and hurtful. Last week I experienced a traumatic event. It would be the first and hopefully the last instance where someone showed cruelty towards my daughter. As she was twirling and tapping in her dance class, an 11-year-old boy blurted, “She should get brain surgery!” My heart sank, and I shrunk in stature. I decided to confront the boy and his father. I couldn’t let go of what I heard. I owed it to my lovely daughter and myself. But after only a few words, I began to sob uncontrollably.

My daughter, the one who supposedly needs brain surgery, ran across the room to console and hug me, asking me if I was OK as I wept away. She knew her mommy was hurt.

I have never been the same since. I am a firm believer that everything happens for a reason: my daughter’s diagnosis, the dance class disaster — all meant to be. I chose to be empowered by it, though.

Now I’m asking for your help with being an agent of hope for others. Your songs are uplifting during challenging times. They reach millions of young people at a delicate age, an age where they can be deliberately mean. Bullying is at an all-time high and can have destructive consequences if not prevented. I learned the hard way as a child about being bullied. Now my 4-year-old is facing it early on.

Writing a special song dedicated to all of those who struggle or have difficulties may not be latest trend, fashionable or fun to talk about. But then again, your band is unique ,and you start the trends.

Having a disability like Down syndrome may be hard at times, but there is hope when there’s love and acceptance. Having a disability is part of the real world. Some people aren’t exposed or sensitive to this. I know One Direction writes songs that reflect reality. Our family faces reality every day.

Your message of love and tolerance would surely resonate more than this sobbing mom could ever do.

Thank you for listening to me.

Love and Peace,

Lara Suleiman

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

510
510
1
TOPICS
JOIN THE CONVERSATION

To the Doctor Who Listened When I Said My Son With Down Syndrome Is Not a 'They'

95
95
0
son in play car
Rukai

We once had four medical appointments to attend over 12 days. Four. In the name of “health monitoring.”

“We must monitor his vision. Their eyes are commonly not working properly.”

Yet my son Rukai can spot a bit of fluff in the carpeting from 20 paces and immediately go to retrieve it.

A rattle of keys in the front door will turn his head. His eyes go wide and fingers point at the arrival of his daddy. Down the hall, I open the bathroom door. One door is quickly disregarded for the other, and he comes charging my way to interrupt, his curiosity piqued.

“We must monitor his hearing. They commonly have hearing loss.”

Pediatrician #1 could not confirm another issue, off to Pediatrician #2. I told P2 that over the years, we’d left off therapists and unnecessary appointments because Rukai drives his own development. We don’t want his default to change from easygoing, chilled, to pressured, overworked. We don’t want to strip away his autonomy.

He is free. He is driven. We protect that at all costs. And there he was only 3. A 3-year-old should play. A 3-year-old should not sacrifice his daylight to waiting rooms in search of issues which may-or-may-not-materialize. A 3-year-old should default to happy.

“Oh yes,” said He. “They are very happy people.”

(Except when he’s being a monstrous little tyrant, my good man. Come to ours when we’ve got a new menu item and watch me try to get it down him. If that’s happy, then Bozo the Clown got it all wrong and we’re living amongst the comedy of Pennywise.)

Saturday came, and we had appointment four of four: The Baseline Echo. Two years since discharge from cardiology at Great Ormond Street. Yes, that amazing place. Yet there we were having A Baseline Echo. Doctor innocuously suggested he may call us in for a follow up, and Tiger Mama pounced. The hell you will.

“He was discharged two years ago,” said I.

son playing with model car
Rukai

Doctor was calm. Doctor was the very best doctor I had come across in my entire 13 and a half years living in the U.K.

Doctor and Tiger Mama pointed and counterpointed and reached an agreement. Daddy sat quietly, watching, listening, asking. Best not poke a stick at this Quiet Man or he’d become Tiger Dad, and you wouldn’t want that tag team in a very quiet hospital that early in the day. Ever.

Doctor was calm. Heart too, was calm. Heart was fine. As we knew. Born with two holes in it, that day there were none. As we knew. No surgery required. As we knew.

Rukai 1 : Pessimism 0.

Rukai wins.

As we knew.

We left shaking hands. We left shaking heads. Four appointments. Twelve days. About 33 percent of our time over the better part of a month spent visiting doctors when there was and always has been pretty much nothing wrong. We are so blessed that he is so healthy. But he isn’t the only person with Down syndrome with good health. Down syndrome is not a disease. Rukai’s condition affects him according to his personal genetic makeup, and that is the only common thread we trust.

People with Down syndrome are not all the same. The fact is, there is no They.

Medicine calls it “health monitoring,” but it feels an awful lot like Big Brother. This is in no way “the life.” But this is The Life. We drop everything, we drive to and fro, we pay, we park. Doctors — strangers — poke and prod. Rukai thrashes and shouts. Cut it out. Quit poking me. You just weighed and measured me two days ago. Stop shining that light in my eyes. Get that thing out of my ear. That gel on my chest is cold. I was absolutely fine and you are now antagonizing me. Why?

They are not always happy. Damn it, stop suggesting it.

And stop calling my son They.

I told the Doctor (because he did drop a “they” early on in the conversation) that the services were awful where we lived, that those people were intrusive and patronizing and disrespectful.

They threw Rukai into a box labeled “Down syndrome” and discounted him. So we packed up and moved house to begin again.

(And seriously, who does that?)

“He is our son. He is our child. He is our world,” said I. “He is not They.”

And this Doctor, he nodded. He smiled and he nodded and he kept scanning for a problem that did not exist. He searched for one acronym, and I corrected him that it was the other acronym we were looking for, that the notes were wrong, that it was “column B,” not “column A.”

And this doctor, he smiled and he nodded and he seemed to get it. I wish for the world, that they all could get it. I apologized for my short fuse and explained at length why Tiger Mama pounced initially, and he understood. That was after he told me I was right. About the acronym. It really was column B.

And then he said it. “You just want a ‘normal’ life. If nothing is wrong, you just want to get on with things.”

We were there to check Rukai’s heart, and there mine may well have skipped a beat.

And so we agreed to a suggested check up five years hence — “suggested” being the operative word; no “mandatories” here.

Thank you for hearing us.
Thank you for listening to us.
Thank you for understanding us.

I told him where we came from and to where we’ve gone.
I told him how bad it was there and what we endured.
My words did not ricochet off. They nestled in and had a cuppa joe.We turned to go, and Rukai turned towards him.
We turned to go, and there was a high five.
We turned to go, and Rukai reached out. To the Doctor who Reached Out.
Rukai climbed into his lap and delivered a cuddle.
Rukai is the world’s greatest BS detector, and that cuddle was there for the giving. To the Doctor who Reached Out.This is The Life. But Rukai is now very firmly in the driver’s seat.

Thank you, Doctor.

95
95
0
TOPICS
JOIN THE CONVERSATION

When a Man in the Elevator Didn't See the Whole Picture of My Son With Down Syndrome

2k
2k
4
picture of baby with breathing tube
Kaleb

Well it finally happened.

The other day I had a first I knew would eventually happen; it was just a matter of time.

While leaving an appointment a gentlemen in the elevator with us looked over at my son Kaleb, and I watched the recognition in his face which followed with, “Oh bless you guys.”

Even though I knew something like this would eventually happen, I was unsure of how to respond.

Part of the gentleman’s statement might have been geared towards the oxygen and monitor with Kaleb, which depending on the extent of his knowledge could have even been part of what he meant, knowing that those with Trisomy 21 are more prone to
health issues and are evident with Kaleb’s extra accessories. In reality the oxygen and monitor have more to do with his premature birth at 28 weeks. We don’t always go into the full birth story, NICU stay and medical file with every person we meet.

I really do not believe this guy meant anything negative by his statement. As we were talking, we discovered a mutual friend who has a daughter with Down syndrome. He began talking about her and it appeared to be an attempt to make sure we knew and understood that he was friends with her. But I was aware that he saw Kaleb’s diagnosis first.

In the beginning, after receiving the diagnosis, I struggled with this, so I get it — even though others assured me I would not always think or see his diagnosis first. Already at only 6 months of age, I am experiencing this and find myself thinking about it less and less. I also know when others view Kaleb they might first see Down syndrome. My hope and prayer is that they will not stop there, that they look beyond the diagnosis and see Kaleb.

Later while talking with big brother Kaden, I got out my phone, pulled up an email and showed him a picture that his teacher sent me of him playing at daycare. He thought it was cool that his teacher had taken his picture and sent it to Momma. We looked at it, and we pointed out his Kansas City Royals World Series Championship shirt, his Thomas watch and how much fun he seemed to be having. He then proceeded to take his finger, trying to move the picture around and said, “I want to see more.” He told me about his friends and other toys in his room. He knew there was more going on than what the picture could capture. It showed just one snapshot of what was going on. The picture didn’t include his friends who were playing nearby, it didn’t show more of the toys around or the feelings he felt while playing.

It is the same for many when they see someone who looks or acts differently. They see the initial picture, a picture that seems different. I have gotten to know Kaleb, I have fallen in love with the person. When I see Kaleb I see his beautiful eyes and his irresistible chubby cheeks. I see his spunky personality — a personality that shows itself more and more. I picture those big smiles I love and our “talks” we have as he coos at me. As with Kaden’s picture I know there is more to Kaleb than what meets the eye. That snapshot of his outward appearance or of his medical equipment doesn’t tell the whole story. 

March 21 is World Down Syndrome Day, a day where we recognize those individuals who are born with a little something extra. It is a day to celebrate those individuals who so beautifully show us every life can leave its mark and has something to offer this world. While having an extra chromosome gives them something in common, we recognize and celebrate their individual personalities and varying talents/abilities. It gives us a day to show the world that there is more to the picture than what meets the eye.

Follow this journey on Adventures, Reflections, and Life Lessons.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

2k
2k
4
JOIN THE CONVERSATION

Half of These Parents Have Kids With Down Syndrome. Can You Tell Who They Are?

376
376
0

Every parenting experience is different — full of challenges, downfalls, triumphs and joy. All children, whether they have a diagnosis or not, have their own set of talents and struggles. The video below is a beautiful reminder of this, where parents and siblings of children with and without Down syndrome talk honestly about the most rewarding and the most challenging experiences their families face.

Midway through, you’re asked to guess which loved ones have a child with Down syndrome and which don’t. Chances are you can’t tell the difference. The clip ends on this note: “We’re all in this together.”


 

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

376
376
0
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.