When Grief Over a Diagnosis Sneaks Up on You

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When we got the diagnosis in January, I’d felt a huge sense of relief. We finally had answers to our many questions. We were certain of what I’d felt in my heart for a long time — my son, Jackson had childhood apraxia of speech.

With diagnoses in hand, I set out to educate myself and others. I hit the ground running to make sure we were doing everything we possibly could for Jackson.

What I didn’t do was grieve.

Last week, the sadness and uncertainty nearly pulled me under. Somewhere between learning we needed to get an occupational therapy evaluation, realizing it’s highly likely that Jackson has sensory processing disorder and battling the school district to meet his needs, the grief found me.

So I fell apart in the shower. I let the water muffle the sound of my sobs.

At 2:00 a.m., silent tears hit my pillow. Jackson wasn’t feeling well, and it killed me that he couldn’t tell me what was wrong.

I sat in my car and cried in the parking lot outside the doctor’s office but quickly pulled myself together before my appointment. The doctor walked in and her first words were, “That little boy of yours is so lucky to have you as his mama!”

And I fell apart again — right there on the exam table — while my doctor hugged me.

Grief found me last week.

I grieved for the little boy who wants so desperately to talk.

I grieved because we have a long, hard road ahead.

I grieved because my 3-year-old should be signing up to play soccer or participating in activities with other kids.

I grieved because being the parent of a child with special needs is hard.

I grieved because few people truly understand what we face on a daily basis.

The week leading up to Easter was filled with tears and sadness. I was weary from worry. But then Sunday came, overflowing with hope, and these words comforted me:

Because he lives

I can face tomorrow

Because he lives

All fear is gone

Because I know

He holds the future

And life is worth the living

Just because he lives.

This apraxia journey is a roller coaster ride. There are days I feel strong and capable — Jackson’s biggest advocate. Other days I question my ability to get it right.

I never realized I’d be fighting so hard for my son when he was just 3 years old. I never imagined I’d be worried about IEPs and making sure people see him for who he truly is and not the labels they want to slap on him.

Yes, there are days I feel defeated and frustrated — but hope always lingers.

Oh, how I’m grateful for the joy discovered amidst the difficulties. Easter egg hunts. Texas bluebonnets. Ice cream for dinner.

I love this little boy entrusted to me.

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This post originally appeared on JenniferJacksonLinck.com.

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When a Manager Offered Me a Janitorial Job Because of My ‘Type’

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A few years back, prior to becoming a Vacation Planner for the Mouse, I had many opportunities to pursue a role in reservation systems and guest services.

I lived in an area where there is a big name theme park and a casino that just opened up on the outskirts of my city. Plenty of opportunities to put my college level skills in Advertising Communications to work. I knew most of the basics of recording demographic information and communicating with people in a customer service setting. I’m the ideal candidate for many things…

… But I’m legally blind.

My first try at the theme park to get a guest relations role was turned down because I couldn’t be face-to-face with their computer screen. Why they had it on the ceiling was beyond me, and they wouldn’t accommodate me unless I was wheelchair-bound.

Funny, isn’t being blind a disability, too?

So after being let down yet again, I tried the casino. It was a large group-interview thing, something I tend to be horrible at because it’s hard to follow visual cues.

Well, wouldn’t you know it, I got a call back. Not for guest services like I hoped, but for what they called Environmental Operations.

So I went in, prim and proper, carrying my portfolio in a breifcase, thinking this was my big break.

It was a job offer to be a janitor.

The pudgy manager was there talking to me like I was slow, asking me what a janitor does in an almost smug voice.

Now I had bad interviews before, ones where I came out crying and ashamed. Discrimination sucks. And for someone like me, it’s a common thing that comes out in important times like this.

But this time, I wasn’t going to have it. No more was I going to go home and ball my eyes out.

“So you are assuming that I as are woman with a slight physical disability can’t function beyond a level capable of picking up used beer glasses?” I said in the most serious yet cheerful manner.

“Well, a girl of your type…”

And boy, I got heated.

“A girl of my type? What is that supposed to mean? A girl who fought her whole life to be taken seriously? A girl going to a well-known college in advertising communications,  who has been working since she was 17 in various forms of retail and marketing positions? A girl who devotes her life to volunteering for various organizations? A girl who has great communication skills and is friendly with anyone who needs assistance?”

“But I mean… given your… uh… visual…”

“Take a look at this portfolio and read me out loud what everything says,” I ordered as I tossed the folder on the table.

And so he read:

“Associates degree in advertising from Johnson and Wales University, Millennium Dreamer Global youth summit ambassador sponsored by Disney, JWU Deans List, Volunteer at the YWCA, Volunteer with Habitat for Humanity, DECA member, Special Olympics Coach, State of Pennsylvania Paraprofessional Certificate…” and the list went on and on as his face turned pale.

“I do believe this concludes the interview, sir. But let me address one thing. Next time you see a person like me in the crowd, don’t just assume that cleaning toilets is all we can do. A person like me is perfectly capable of doing more, so much more. Maybe next time you overlook the disabilty and give that person a shot.”

“I’m… I’m sorry,” he muttered.

“This is a case where you shouldn’t be sorry. As a matter of fact I feel sorry for you that you lost a great candidate,” I said as I shook his hand and walked away.

For once, I didn’t cry. As a matter of fact I was angry, yet proud I was the one for once to be on the other side of the table.

So to that HR person over there looking at that resume and that beautifully capable person across the room, learn to look beyond and see the big picture. You never know that the person you reject based on appearance will soon become the biggest asset in your company.

You don’t know what you’re missing.

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I’m Not Courageous. I’m a Mother.

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I have learned more from my boys than I learned on my own in 34 years of life. Despite their young age they have shown me that first and foremost I am a mother. This is what defines me, not my job or my past. Being a mother is my single greatest achievement. It is what gives my life meaning and guidance.

They have shown me that I am strong and that despite the bad days, when the stress and anxiety about Sam become unbearable and everything seems to be crumbling around me, I will wipe away the tears and I will carry on.

Not because I am brave but because I am a mother.

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I know there will be more bad days ahead, but my boys have shown me that it’s OK to cry. Crying does not make me weak. Instead, my struggle makes me human and with each tear I wipe away I become a stronger and better mother.

I am not courageous — I am a mother. A mother of two amazing boys who remind me every day to live in the present. This is the single most important lesson they have taught me. And when you don’t know what the future holds for your family, this is the only truth that matters.

My son Sam is delayed because he has not reached his milestones on time. Abandon the notion of time and Sam is a normal, happy, smiley baby. After all, he has his whole life to learn how to walk,  run and talk. At a young age children have no notion of the past or the future. They only understand the present. In his innocence Sam does not know that he is delayed and Loic does not know that his brother is different. He does not ask me why his brother is not yet walking. He just loves him for who and how he is with no strings attached.

Their innocence transcends all notions of time, rendering expectations meaningless. All that matters is the here and the now. Wouldn’t we all be a little happier if we could see the world through our children’s eyes?

But I am a mother, and my days revolve around time (exercise time, nap time, play time, bath time, story time and bedtime) and my thoughts revolve around my children’s future. I cannot abandon the notion of time but I can reshape my focus, attention and perspective. With Sam, all we can do is wait and see… but I plan on making the best of this waiting game.

Time will not be my enemy, I will befriend time. I will enjoy every precious day, hour, minute and second of this life. Because let’s face it, at the end of the day, time goes by too fast.

“Happiness, not in another place but this place… not for another hour, but this hour.” — Walt Whitman

A version of this post originally appeared here

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How My Diagnosis Threw Me Into the Rewarding World of Adoption

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My name is Rachel, and I’m a type 1 diabetic.

My diagnosis was very much an ending and a beginning. You see, I’d been sick for a year and a half. During that time I visited five medical professionals, all of whom reviewed my symptoms and rendered a verdict — the wrong verdict.

I’d lost 30 pounds, was constantly hungry and thirsty, experienced numbness in my hands and feet, my vision was blurry, I was depressed, I was wetting the bed, and no amount of antibiotics could clear up my sinus infections. One doctor sighed and said, “Anorexia?” Another proclaimed I probably needed sinus surgery. Another told me to simply eat more.

I was diagnosed in an emergency room. A doctor burst into my room, wide-eyed at the lab report on his clipboard. “Well, we know why you’ve been so sick. You have type 1 diabetes.” My blood sugar was seven times the normal level, and my A1C, an average of my blood sugars over a three-month period, was so high that it wasn’t on any medical chart. I’d been diabetic for a long time, and I was on death’s door in the ER, my body in a deadly state called Diabetic Ketoacidosis (DKA).

I spent five days in the hospital: numb, angry and defeated. I had my answer, but it was one that made me hate the body that had turned against me. My first diabetes nurse educator shared that I had to mourn the loss of part of my body. But I ended up mourning much more: the year and a half I hardly remembered, the insults I faced as others viewed my ever-thinning frame, the memories I didn’t make because I was literally wasting away, the opportunities I missed because I was depressed and sick.

I was handed glossy diabetes brochures with 60-year-old couples on the front, grinning with their too-white teeth and wearing Velcro-topped shoes with a greener-than-green park in the background. These brochures made diabetes look more like a luxury vacation than a lifetime sentence of needles, blood and medical appointments. I silently screamed at those happy couples: This disease has no cure! I might face kidney failure and amputations and blindness! 

I was at rock bottom.

As I neared the end of my hospital stay, one of the nurses asked if my husband and I planned on having children. We both said yes, and she proceeded to educate us on diabetes and pregnancy. I’d stopped listening. A word, the clearest I’ve ever felt, popped into my mind.

Adoption.

Logically, it made sense. I wouldn’t chance passing the disease to our children. I wouldn’t have to endure a complicated and potentially dangerous pregnancy. In my heart, it made sense too. I’d worked as a daycare employee, nanny, children’s writing camp counselor, Sunday school teacher. I had no problem loving children I didn’t birth as my own.

Two years later, our first baby arrived. She had chocolate skin, a soft-as-cotton-candy afro and eyelashes that rival those of any mascara model.

Two years later, our second daughter arrived. She was a serious, demanding and full of a personality that told us she was going to have the kind of drive it takes to be successful in life.

Then, like clockwork, two years later, our son arrived. He’s incredibly affectionate and energetic. He calls me “Mama.”

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I managed to gradually move from rock bottom to a mountaintop because I had a purpose.  My purpose was to get healthy, stay healthy and become a mom. Because of my diagnosis, I also fulfilled my lifelong dream to publish a book (and not just one book but three with a fourth and fifth in the works!), write articles about my disease and adoption and encourage others.

Despite my many sick days, I wouldn’t trade my diagnosis in for anything. Without it, I wouldn’t be a mom to my babies, and I wouldn’t be the writer I am today.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. 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.

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What It’s Like to Have a Twin Brother With Special Needs

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Without my brother, Owen, my life would be in black and white. In my house, there are a lot of situations including Owen, but good or bad, they always teach me a little bit about him and myself.

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I love Owen, but sometimes, things can be a little rough. Like the time when we were at my grandfather’s house, Owen ran out the front door. My mother cried and we all searched for my twin brother. When we found him after about five minutes, which felt like much longer, we all ran up to him and that day, my family and I realized what Owen is capable of.

I have many different feelings about Owen. Sometimes, I am jealous that he gets applause when he picks up a fork or when he says a new word. I used to get very jealous because I didn’t understand why he got all the attention and I didn’t. Now, I don’t usually get envious but when I do, it is typically because he gets another aide or he is crying so my parents can’t watch me do flips into the pool.

Overall, I now understand that Owen needs special attention from many people, and I know that my parents love and want to pay attention to me.

Other times, I am worried if he is going to be okay after a trip to the doctors’ office or if he is safe at every moment. Last summer, when the pool cover broke and our pool was wide open, it worried me, because Owen loves water! If he could, he would be in the pool every second. I would stay awake for about an hour each night wondering if he was secure in his bed because I knew that if he could, he would be in the pool.

I get angry when my friends say words like “stupid” or “retarded.” I often stick up for my twin even when he isn’t around. When I hear students on my bus or at school call another kid “retarded,” I speak up and tell them that when they do that they are making fun of people with intellectual disabilities.

The majority of the time, I am happy that Owen is my twin and am grateful to have the experience of learning from someone who has special needs. Loving, silliness and happiness are characteristics that describe my brother. I love that Owen doesn’t have any fear or hate in him. He has taught me to see the best in everyone and appreciate the small things. Owen adds a lot of colors into my life, most of them beautiful and few that are gray.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why People From All Over Are Taking Photos With Carrots

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Brice Royer, the man best known for his viral Craigslist ad selling unconditional love for the price of $0, has recently been getting some internet love of his own.

The 31-year-old from Vancouver has a form of stomach cancer called gastrointestinal stromal tumour (GIST) that has severely restricted his diet. He wrote on his blog that carrots are the only food he can eat consistently without pain. Since his diagnosis, he’s lost more than 30 pounds and struggles to get enough nutrition.

To help boost his morale during this difficult time, people from all over world began taking photos of themselves with carrots and sending them to Royer.

Brice Royer (Brown Rice) is at home or in hospitals most days. Can you cheer him up and kiss a carrot for him? He has...

Posted by Rachel Moody on Saturday, March 28, 2015

 

Their kindness made me tear up,” Royer wrote about the people sending photos, “and the fun pictures made me laugh.”

Royer says his mother will print out all the images and put them on a wall where he can see them. He calls it the “Carrot Love Wall.”

It makes me want to get out of bed, and it makes me want to stay alive,” Royer told The Huffington Post British Colombia. “Normally they say patients like me have a five-year life expectancy after a GIST diagnosis, but I won’t give up so easily.”

Tweet or Facebook photos of yourself with carrots using the hashtags #EatCarrotsForBrice and #KissCarrotsForBrice to show Royer some support and to make him smile. 

h/t HuffPost BC

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