To the Mom Whose Child Just Received a Cancer Diagnosis

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I’ve been thinking a lot lately. I’ve come to a point in this journey where I feel a little lost. It’s a common issue. My son, Sam, is almost done with treatment. Where does this leave me? Where does this leave a woman, a mother who worked full-time prior to her son getting sick?

I started thinking about the different emotions I’ve felt since the beginning. How lost I was at the beginning, how I felt I’d found a side of myself I never knew existed and how I’m now feeling lost again. Lost, found, lost.

It’s amplified when I meet the newer moms on this journey. A common phrase I hear when I meet the new moms is, “I don’t know how I am going to do this.” Usually I only have a few minutes to talk to the new moms, so my answer is usually, “You get through it because you have to get through it, and you will.” I’ve been told that numerous times when I was sure I couldn’t “get through it,” and I’m sure I’ll continue to hear those words. As we get closer to Sam’s last chemo visit, Sam’s last chemo pills, Sam’s last steroid pulse, I think about what I would say if I had the time to sit down and talk for a few hours with the newer moms.

Dear New Cancer Mom,

I’m sorry. I’m sorry you’re part of this group. I’m sorry you now have the title of cancer mom. Your life has changed. In one split second your world just fell apart.

Allow yourself to cry; it will make you feel better. Allow yourself to kick and scream and have a tantrum; let it take all your energy, because there are some days that crying is all you can do for the day.

The fog will lift, I promise. The feeling you get when you walk into a store or a restaurant, that feeling that everything is surreal, that you want to turn around and walk out because everyone in that place is happy and laughing — it will go away. In place of that, you will look at people who are constantly unhappy with their lives and remind them of how precious life is.

Stay positive because things do get better, but be a realist, too. Don’t allow people to make you think your anxiety and worry aren’t justified. They are. Your child was diagnosed with cancer. It’s a very scary world to be placed in. Watching your child go through this and watching other children, it’s not something you wish upon anyone. But when you witness your own child and all the other children continually fighting, it will change your life.

Document your journey, whether it be a journal, a blog, pictures or videos. People may ask, “Why would you want to document this part of your life?” It’s a reminder, my friends, a reminder of what you’ve been through. Write your child a letter at different times of their treatment so they see the battle in your eyes as a mom.

There are people who will support you the entire time, and others who just can’t keep up, who are tired of altering their life to accommodate you. Those are the ones who don’t understand. There’s no need for you to explain, so don’t. You have a sick child; there’s no explanation needed. Move forward and don’t hate them for it.

If you have a spouse, spend alone time with him or her as much as possible. Go out on dates when you’re able to, and take a nap when the opportunity is there. Don’t complain too much about the little things; it’s not worth it. Pay it forward, for there are many people who will help you — sometimes people you don’t even know.

Swallow your pride and ask for help when needed. Surround yourself with people who understand and know what you’re going through. No matter how much others claim to know what you’re going through, they don’t. Perhaps they sympathize with us, but they can never empathize.

If the opportunity arises, take sometime for yourself. Even if it’s a ride in the car by yourself, do it. Don’t feel guilty. You are giving 110 percent of yourself to help save your child. The worrying, anxiety and lack of sleep is overwhelmingly exhausting. If there is anything that has caught me off guard this entire three years, it’s the exhaustion that comes with the sleepless nights, the hospitalizations, the worrying, the crying and just the fight.

Regardless of the type of cancer, the experience is long and difficult. Regardless of what others say, this will be a part of your life forever. Once a cancer mom, always a cancer mom. Hang in there. Keep moving forward. Head up, chin up.

Sincerely,

A cancer mom

Follow this journey on Chemo and Donuts.

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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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