When People Compare Our Family’s Down Syndrome and Leukemia Diagnoses

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I was in a shopping center months after my son, Sam, was diagnosed with leukemia and in the distance, I saw an elderly friend-of-a-friend approach me, shaking her head. As she came closer, she took my hands, said she’d heard the news of Sam’s illness and lamented our “rough couple of years.”

Weeks later, I happened to be standing in a gathering area at school and was introduced to another mother. After some discussion, she looked at me in bewilderment and said, “You mean you have a child with leukemia? And a child with Down syndrome?”

I totally get where these statements and sentiments come from. In the space of just over two years, our family has received two separate, challenging diagnoses that have completely changed our lives. There have been many similarities in the process of receiving those diagnoses, too – the signs, the suspicion, the waiting, the confirmation, the grief, the sharing of news. Yes, there have been some extremely rough moments in the past few years. Yes, we have a lot going on in one little family.

But, despite the similarities in the process of diagnosis, is it fair to compare Down syndrome with leukemia? Is it fair to compare the potential complications of having three copies of a 21st chromosome with cancer? I think it’s like comparing apples with oranges, chalk and cheese.

When Sam was first diagnosed with leukemia, my husband, Ben, and I mused that “two weeks ago, the biggest thing in our world was having a son with Down syndrome.” And it was a big thing to us back then. But leukemia has helped us put Down syndrome into perspective, and quickly it paled in comparison.

Receiving the news 18 weeks into the pregnancy that our baby had Trisomy 21 was devastating. But in hindsight, we know Nicholas’s diagnosis was our training ground for what was to come. Ben and I learned a lot about ourselves and our relationship as we came to terms with the diagnosis, and it prepared us in many ways for facing the next curveball. We learned that, in spite of the fact we deal with challenges differently, we needed to lean in and love each other even more, even when our natural inclination can be to shut down and fly solo. Through the gift of the Trisomy 21 diagnosis, “Team Love” became stronger and more resilient for when we had to face leukemia.

If we had chosen to terminate the pregnancy and not keep our third baby, I’m pretty sure after Sam was diagnosed with Leukemia, we would have said something like, “Isn’t it lucky we don’t also have that high-needs child to think about at a time like this?” We might have been thinking we’d saved ourselves some heartache not having two children to worry about. But the truth of the matter is that, in the challenging time after being told Sam had leukemia, Nicholas was the light in our darkest of days. His big smile, his cheeky giggle, his melting hugs – they saved us, and we needed his presence like oxygen. Nicholas is pure love.

While it’s in my nature to see the good in both diagnoses, Down syndrome isn’t like leukemia. Yes, we have been blessed by a child whose Trisomy 21 label hasn’t been accompanied by any health complications so far, but even if it did, I would choose three copies of a 21st chromosome over leukemia in a heartbeat. If I had to choose between watching my child achieve milestones a little later, low muscle tone, almond-shaped eyes and a list of “possible” characteristics, or watch my child endure chemotherapy and face losing him to cancer? There is no question.

Some days I do feel exhausted and overwhelmed by the high needs of two children. But most days, I’m just exhausted and overwhelmed by the juggle of having three children in general. I have learned all children come with their own version of “high needs”; they just manifest in different ways (and, just quietly, Nicholas is probably the lowest maintenance of all my children). We make a conscious choice to take one day at a time.

While they are different diagnoses, both leukemia and Down syndrome have helped us to slow down, appreciate our blessings, and celebrate every milestone achieved and every day we have together.

Follow this journey on Mummalove.

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When My Son With Cerebral Palsy Says the Most Amazing Words

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“It’s amazing you can understand him,” people sometimes say to me. Well, yes, I can, often because my son, Max, likes to repeat a lot of the same phrases. He uses the speech app on his iPad to communicate and he knows that’s critical for people at school, friends and others to understand him.

At home, though, he prefers to speak words and say them again and again until we get it. This can be tricky, since the majority of consonants are not yet his thing (yay for the letters “m” and “n”). But he wants to talk so badly, which was one reason I took a hard stand when his speech therapist at school said articulation would no longer be a focus of therapy sessions.

Our daughter, Sabrina, is particularly good at translating Max-ese, and when I am not sure what he’s trying to tell me, she often is. Sometimes we have a good laugh. (See: Want to buy a monkey?)

What’s most amazing of all is that this boy is talking. Those doctors in the neonatal intensive care unit (NICU) sure can do a number on you, and when we were told he might never talk, that stuck in my head. Once, years ago, someone laughingly said to me that when Max did speak one day, I’d get tired of hearing him. “When he talks, I will never, ever get tired of hearing him,” I informed her, and it’s true.

Every single day, I am grateful for the words. For the rest of my life, I will be grateful for the words.

“Hi, ohmmmy!”

[“Hi, Mommy!”]

“I ahn ooo eee a ire-ahn ehh I owe uh!”

[“I want to be a fireman when I grow up!”]

“Are ooo oh ahh-eee?”

[“Are you so happy?”]

“Oh-eeen eeeesh my ay-or-ih or!”

[“Bowling is my favorite sport!”]

“Ayn oooh!”

[“Thank you!”]

“Oooh ire-ouse!”

[“I’d like to visit a new firehouse. Now, please.”]

“I ahn ooo eee inion ooh-eee!”]

[“I want to see the Minions movie!”]

“Ah oooh oh-ay?”

[“Are you OK?”]

“I ahn oooh-eeee!”]

[“I want sushi!”]

Oh, and the best words of all, the ones I have always seen in his eyes and in his kisses, but he has only started saying in the last year:

“I uh ooooh, Ohmmmy!”

[“I love you, Mommy!”]

Ellen Seidman the mighty.1-001

Follow this journey on Love That Max.

Read more from Ellen Seidman:
Special needs motherhood, pretty much summed up in GIFs
On living with Joy and Sadness
What I did on summer break: special needs parents edition

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Watch the Moment This Girl With Down Syndrome Meets Her New Family

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For the Shook family, Monday, July 21, is a date they won’t soon forget. It’s the day they met Lucy.

Lucy is a 6-year-old girl with Down syndrome who’s been living in an orphanage in China, KHOU-TV reported. The Shook family, from Woodlands, Texas, fell in love with Lucy when they saw her on video. Now, they’re in the process of officially adopting her. On Monday, they were able to finally meet her in person and shared an emotional moment at the airport.

We don’t see it as we are going to help her,” Brent Shook, Lucy’s soon-to-be father, told KHOU-TV. “We see it as she’s going to bless our lives.”

Watch Lucy meet her new family in the video below: 

Go here for more information about fostering children or adopting with Great Wall China Adoption.

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When a Doctor Said They Could ‘Prevent This From Happening’ to Her Next Child

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Tara McCallan’s daughter, Pip, was just a few days old when several doctors confirmed her Down syndrome diagnosis. One looked at McCallan with pity and said, “If we choose to have a third baby, they could prevent this from happening.” 

“The tone was set on how some would value the life of my daughter,” McCallan says in her powerful TedxQueensU Talk below. “Right there my life and her life exploded in beautiful purpose. Right there a passion for change and a fight was awakened.”

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McCallan, a mother of two, founder of Happy Soul Project and also a Mighty contributor, goes on to recount several life-changing moments on her special needs journey.

Get the full story from McCallan’s Tedx Talk, “Be, Demand & Inspire Change:” 

Related: The Moment My Son Showed Me His Sister Will Be OK, Even After I’m Gone

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We Love Why Amy Schumer Gave This Man a ‘Disappointing’ Lap Dance

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Comedian Amy Schumer gave a terribly disappointing lap dance for the best reason: to raise money for the National Multiple Sclerosis Society.

While promoting Schumer’s new rom-com “Trainwreck,” Universal and the fundraising site CrowdRise held a raffle where people could enter by making donations. The grand prize included two tickets to the film’s New York City red carpet premiere, the chance to have actor and “Trainwreck” co-star Bill Hader serve you popcorn in your seat and a “disappointing” lap dance from Schumer.

Multiple sclerosis is a cause close to the comedian’s heart. Schumer’s father was diagnosed with it when the actress was 12, according to an interview Schumer did with CBS News. The diagnosis and her father’s life with the disease has affected Schumer’s outlook and career, even inspiring a lot of the plot of her new movie.

I seek laughter all the time,” Schumer told CBS. “I think that’s something that also comes with having a sick parent is you don’t know what’s going to happen, and so I’ll be like, ‘I’m psyched my legs still work and I want to, like, experience all I can and make as many memories as I can.”

Watch Schumer deliver on the promised “disappointing” lap dance in the video below:  

 

The grand prize winner and lap dance recipient, Adam Fein, had this to say about the experience on his blog: “It was as great as you might imagine and not at all disappointing.”

Fein enjoyed himself so much, in fact that he’s decided to raise even more money for the cause and match the donations up to the first $5,000.

Check out some pics from Fein’s big night below: 

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Adam Fein getting his popcorn from Bill Hader. Photo courtesy of Adam Fein.
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Adam Fein with wife Paula and Amy Schumer. Photo courtesy of Adam Fein.
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Schumer wearing Fein’s glasses and giving him a “disappointing” lap dance. Photo courtesy of Adam Fein.
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Schumer wearing Fein’s glasses and giving him a “disappointing” lap dance. Photo courtesy of Adam Fein.

h/t BuzzFeed

 

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The Phone Call You Dread When Your Child Has Epilepsy

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callblog When my mobile phone rings, one number pushes my anxiety levels to overload. Before I’ve even answered the call, I’m preparing for the worst.

“Hello, Kelly, it’s Fran from the front office at school, we’ve called an ambulance. Your son is having a seizure.”

This is the call I dread the most.

I drop everything and run to my car and drive as fast as I can to be by my son’s side. Once when I got the dreaded call, I was with a friend, and she could tell how distressed I was as I yelled “F*ck, f*ck, f*ck” while we ran to my car. My friend insisted she drive. I’m not sure if she’s ever played Gran Turismo, but she got me to my son in a time Daniel Ricciardo would be proud of. Every time an ambulance has been called at school, I’ve managed to make it in time to hold my son’s hand on the journey to hospital and be there when the epilepsy fog cleared.

My mobile phone became a permanent attachment after my son’s first seizure. I will never forget holding his lifeless body or the gut-wrenching feeling that my son was going to die. He was blue, cold and his eyes were fixed, looking to the corner of the room. He was covered in sick, and he’d wet his pants. He was floppy — like a lifeless ragdoll. I called out his name, but he couldn’t reply. He kept having seizures that day, and after almost 12 hours of being pumped full of God awful drugs, the torture stopped. It left my little boy and our family broken. He was medicated with anti-convulsive drugs, and we were told to get on with our lives.

The first time the school rang after the epilepsy diagnosis, my heart sank. It wasn’t because our son was having a seizure but because of his out of control behavior, caused by the meds. Over the years, there have been a lot of phone calls. I’ve honestly lost count. The medication was for all intense and purposes working – it was stopping the catastrophic seizures but had turned our little boy into an emotional mess.

After years of trial and error, things have settled for our son, and a small dose of one medication seems to be working for him. He recently moved schools, which is a big deal for any kid, especially one who needs routine.

It wasn’t long before I received a call. My son’s behavior had gotten him into trouble. A long and serious chat followed.

A week later the school called my mobile phone again. I thought, What has he done now? But this wasn’t like the previous call. “Your son is on the bed in sick bay; there’s been an incident.”

Bloody hell, has he had a seizure, and they’ve not called an ambulance? Why didn’t they call me as soon as the seizure started? The adrenalin was starting to kick. I was getting ready to run to my car.

But before I managed to set off on my Cathy Freeman-like sprint, the teacher explained my son was playing cricket and had copped a ball in his eye.

“Oh, is that all?” I thought to myself. Relief flooded this mom!

Wow. This was the first time I’d received a “normal” call. I know an eye injury can be serious, but in the scheme of things, I’d take “a ball to the eye” call over a “we’ve called an ambulance” call any day.

I may have been a little bit happier than most when I collected my son with a throbbing black eye from school, but it was exciting not to see him strapped to a stretcher receiving oxygen. I guess it’s all relative.

(For the record, I did take my son to the doctor to get his eye checked and it was fine.) Awesome. Just add ice!

Follow this journey on Ragdoll Mummas.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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