The Top 6 Reasons I’m a Thankful Special Needs Mom

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As I ponder what to be thankful for this Thanksgiving, it’s easy to find an answer. These are my top six reasons to be thankful.

Reason #1: A miracle in the making.

A few weeks after my son Samuel’s birth, he was diagnosed with a rare form of dwarfism called thanatophoric dysplasia. His days were not promised to us. Indeed, we lived each day understanding our son’s life was precarious. Days turned into weeks, and soon we celebrated his 1-month birthday.

Then, on his 6-month birthday, he came home from the hospital.

That was 10 years ago. We no longer celebrate “month” birthdays, but this Thanksgiving, I thank God because I believe he gave us us the blessing of raising a miracle.

Reason #2: A boy’s love for his daddy.

As I lean over to lift my son from the car seat, he presses his arms tightly to his body. I stand up and pause. Hmm, that’s unusual. I try again. Same reaction.

I ask my husband to try. As my husband approaches, he wiggles his fingers and offers his son a huge smile. My son looks up, flashes his pearly whites and raises both arms in the air.

I nod, now understanding. He wanted his daddy to pick him up, not me.

I’m not upset by this change of procedure. I’m delighted to see this relationship between my husband and his nonverbal son.  He loves his daddy. Now, he looks for his Papa to pick him up all the time. I am thankful for this beautiful interaction showing what love looks like.

Reason #3: The wealth of health.

I’ve never been more grateful for health than now. Could it be, as I tip toe into my 50s, health has more bearing? I pray fervently for my sweet son to have health. Indeed, I have prayed for this boy daily all his life. Every sniffle, runny nose and cough raises my eyebrows. So it is with most mothers.

My toolbox has a couple of extra tools to help my son. A nebulizer to help his coughs. A concentrator for low oxygen levels. And suction equipment to help with mucus.

But, more than the tools, I am thankful for not needing to use them. For days upon end, his equipment is silent. The “on” switch stays in the “off” position. For this, I am most grateful.

Reason #4: A boy’s toys (his iPad).

Eating at Texas Roadhouse, we placed Samuel in his stroller at the end of the table. As I devoured my salad, the patrons next to us get up to leave. Passing by the stroller, an elderly gentleman stops and observes Samuel’s fingers flying over the touch screen of his iPad.

“My, he sure knows how to use it.” He then chuckles, adding, “Kids these days.”

I imagine he might have been thinking of his grandchildren. And yes, my son knows how to whip his way around the YouTube Kids app and photos on the iPad. This is one of the tools in our parent toolkit. And I am thankful. It keeps him re-focused (most times) off of his other love, cereal.

Reason #5: Every parent’s go-to: O’s.

My son is quite motivated by a round piece of cereal in the shape of an O. He has learned to stand reaching for this golden circle. He is attempting to walk (sideways) to reach this morsel on the couch. He will obey commands from the school teacher in attempt to not only please her but to secure a delectable reward.

And so, I am thankful for a bag of Three Sisters brand Honey O’s. Don’t leave home without it.

Reason #6: The preciousness of life.

I pick up my 22-pound package of love and hold him tight. I tickle his belly, and he erupts in laughter, making his whole body shake with joy. My laugh lines appear as I add my giggles to his. I gaze into his face, awed. How did I get so blessed?

It strikes me all at once how precious life is. I take these moments, press them into memory and seek to add more, day by day. I’m thankful for the snuggles, the giggling and the laughter of a child. A special child who has exceeded all expectations of a lethal diagnosis of dwarfism. I thank God for this gift.

Thanksgiving — not just a day, but a daily habit.

Follow this journey on A Miracle in My Living Room.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, 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 Share Your Story page for more about our submission guidelines.

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22 People (and 1 Balloon) We Want to See in the Macy’s Thanksgiving Day Parade

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In a perfect world, people of all abilities would be represented and included in the Thanksgiving Day Parade (and, you know, everything else). That’s not the case yet, but if we were in charge of the parade, it might look something like this…

We’d like the following people (and one balloon) included in this year’s Thanksgiving Day Parade:

1. We’d love to see professor, author, animal welfare expert and autism advocate Temple Grandin seated atop a horse and leading the parade, just as she’s led the way for awareness and understanding of autism spectrum disorder.

LOS ANGELES, CA - AUGUST 29: Temple Grandin and Claire Danes attend HBO's Annual Emmy Awards Post Award Reception at The Plaza at the Pacific Design Center on August 29, 2010 in Los Angeles, California. (Photo by Michael Buckner/Getty Images)
Temple Grandin and Claire Danes via ThinkStock

2-5. World-famous model with Down syndrome Madeline Stuart would be strutting her stuff on a catwalk-themed float alongside Rebekah Marine, known as the “bionic model,” fellow model with Down syndrome Gigi Cunningham and “America’s Next Top Model’s” first deaf contestant, Nyle DiMarco.

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Courtesy of EverMaya / Tammy Swales Studio
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Via Rebekah Marine’s Instagram
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Image courtesy of Erica Butler/Majestic Time Photography
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Via Nyle DiMarco’s Instagram

6. Chris Ulmer is a special education teacher at Keystone Academy in Jacksonville, Florida. Earlier this month, a video of Ulmer’s morning routine of spending 10 minutes complimenting each of his students went viral. In our Thanksgiving parade, Ulmer and his students would march along and compliment everyone within reach.

Children learn to love or hate at an early age.I think it's time we actively work towards teaching love and acceptance.

Posted by Special Books by Special Kids on Sunday, November 15, 2015
7. We couldn’t have a parade without Maysoon Zayid, actress, professional standup comedian and disability rights activist. When Zayid, who has cerebral palsy, isn’t making audiences laugh, giving amazing Ted Talks or working the runway, she is advocating for better representation of actors with disabilities in Hollywood.
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Melissa McGlensey / The Mighty
8. Bestselling author, national speaker and autism advocate Kerry Magro would be hanging out on a float with Adele and Demi Lovato, who helped him with sensory overload and issues with self worth.
9. Ronda Rousey isn’t just a badass mixed martial artist and the first UFC Women’s Bantamweight Champion, she’s also a role model for people with apraxia of speech, as we learned when Mighty contributor Laura Smith met Rousey. We would definitely include Rousey in our parade (and not just because we’re scared she’ll beat us up if we don’t), as well as passionate apraxia advocates.
attends the Maxim Hot 100 Party at Vanguard on May 15, 2013 in Hollywood, California.
Via Thinkstock
10. We’d be remiss if we didn’t give these amputee veterans and models a spot in the parade. These heroic (and OK, hunky) U.S. Military veterans appeared in photographer Michael Stokes’s book “Always Loyal” this year.

11. Up next is Ste Walker, the 24-year-old man who raised awareness about invisible illness with a brave Facebook post. Tired of people making assumptions about his health based on his appearance, Walker shared a photo of himself looking “normal” along with one that shows his scars and tubes. The post went viral and educated many people about assumptions we make based on outward appearances.

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Via Ste Walker’s Facebook page.

12-18. Our parade would feature the entire cast of A&E Networks’s new show “Born This Way,” a six-episode documentary airing in December about young adults with Down syndrome. The hour-long episodes feature the stories of seven people with Down syndrome from Southern California as they go about their everyday lives.

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Scene from the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

19. One of the main attractions would be the giant parade balloon of Julia, the new “Sesame Street” character with autism. Julia appears in an online storybook called “We’re Amazing, 1,2,3,” where she meets Elmo and teaches him about autism.

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20-21. If Winnie Harlow, a model with the skin condition vitiligo, wasn’t already one of our favorite people, her encounter with a girl who also has vitiligo certainly cemented it. In September, Harlow surprised April, who aspires to be a model as well, on TV show “The Real.” The heartwarming meeting had everyone in tears. We’d love to see these new friends at our parade, waving from atop a float celebrating all forms of beauty.

22. Laughter would abound, and few people understand the healing power of a joke, and the importance of being able to poke fun at yourself, better than motivational speaker, bestselling author and Halloween costume mastermind, Josh Sundquist. Sundquist has one leg, and for the past several years he’s dominated the costume game with his creative creations. This year’s was no exception — he went as IHOP (get it?).

23. Erin Jones, a special needs mom from Nashville, posted a prescription selfie on Facebook that sparked a mental health social media revolution. Jones’s empowering declaration to the world that it’s OK to get help when you need it, along with her serving as the inspiration behind the #MedicatedAndMighty hashtag, definitely earns her a spot in our parade.

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BONUS: Rounding out our dream Mighty Thanksgiving Day Parade would be a procession of all of our amazing readers and contributors beneath a banner that reads “Different Is Beautiful.”

Without all of you, we wouldn’t be here.

 

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To the Walmart Employee Who Rolled His Eyes When I Asked for Help

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I understand — I look young and healthy to you.

The fact is I’m not. And no, you can’t see that I’m fighting a constant battle with my body. See, I have Ehlers-Danlos syndrome. I’ve also had Cauda equina syndrome, which resulted in a spinal cord injury, along with epilepsy.

I simply asked you to put a 24-pack of water in my cart.

You rolled your eyes, sighed and did so for me. As you walked away you stated, “You would have been fine doing it yourself.” Well, I can’t. Because of the Ehlers-Danlos, lifting anything — especially something as heavy as a case of water — can dislocate my joints. Because of my spinal cord injury, I’ve a hard time balancing. I could have very well ended up falling and dislocating my hip. I could have fell just the right way and, because part of my spinal cord isn’t protected correctly, ended up paralyzed.

I understand when working in retail customers can make your day horrible (believe me, I know from working at a grocery store). Oh, that’s another thing I forgot to mention: if I’d gotten hurt putting that case of water in the cart, I could have been out of work for weeks or months. I could have ended up in the operating room.

Please, next time anyone asks you for help, help them. If your attitude intimidates them into trying to do it themselves, it could cause a trip to the emergency room or worse. For those of us with invisible disabilities, our lives can often change in an instant. Please don’t make it harder.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, 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 Share Your Story page for more about our submission guidelines.

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4 Ways to Help a Friend in the Midst of a Medical Crisis

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We’ve all felt inadequate and even uncomfortable as we try to give support to a friend in need. We may have said some of the dreaded clichés, such as, “God won’t give you more than you can handle!” or “You’re so strong! I wouldn’t be able to do what you do!” You don’t want to sound like you’re minimizing your friend’s pain, but you also can’t truly understand unless you’ve been there. 

I have been there, many times. My daughter, Abby, was born with an extremely rare syndrome called Cerebrocostomandibular syndrome, which affects her airway and lung development. At age 5, she has had 15 surgeries with at least 30 more to go. We’ve been in and out of the hospital for surgeries and illnesses more times than I can count at this point. 

In the last five years, we’ve had so many people do amazing things for our family. I wanted to share with you just a few of my favorites.

1. Be intentional with your offers of help. Instead of saying, “Let me know if I can do anything,” just go ahead and give a day and time you’re going to bring a meal over. I don’t believe anyone’s going to turn down a home-cooked meal! Arrange to clean your friend’s house — without judgment! Invite the kids over for a play date. I never quite got the hang of asking for help, but I was so appreciative to the ones who didn’t wait to be asked.

2. Send gas cards and care packages. If your friend is traveling to a hospital, gas bills add up quickly. Practical gifts like gas or restaurant cards are really nice and don’t take up space in a tiny hospital room. Some hospitals also have gift cards for the cafeteria and coffee shops. 

Care packages are fabulous, too. Include lots of consumable gifts like on-the-go snacks, microwavable meals that can be heated up at the hospital, hand sanitizer, quarters for the snack machine, a bottle of water, a pen or maybe some treats for the person in the hospital — but find out what is allowed first! There’s nothing like sending snacks, only to find out the person can’t have them! 

3. Buy hospital parking passes. Most big hospitals require a fee for parking, but a lot of them sell parking coupons at a reduced rate. Purchase some of these parking passes for a friend who is going to be traveling back and forth often. Make sure you find out about expiration dates and vehicle requirements. This is such a nice gesture. Parking, on top of gas, gets expensive when you do it often.

4. Visit. Whether the person is in the hospital or at home, visitors brighten everyone’s day. Call ahead to make sure a visit is OK, and be sure to ask if there are any restrictions. Many hospitals have minimum age requirements for visitors, and we also always asked that all visitors be healthy and have had the flu shot. Don’t be offended if your friend asks you to come a different day. It could be a busy day of tests at the hospital, or maybe the patient just isn’t feeling up to it that day.

But if you are able to visit, do it! Bring along a fun game or a little gift. Put meals in individual containers for your friend to heat up. Honestly, you don’t even need to bring anything but your company. Your visit will be just the medicine your friend needs.

No matter what you decide to do for your friend, just know that your love and support means the world to her. Even if she can’t express it, even if she never gets around to writing thank you notes, even if she lashes out at you from the stress of the situation — you caring enough to reach out is what is helping her get through this difficult time. 

Follow this journey on Life as a Leach.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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 Share Your Story page for more about our submission guidelines.

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To the Home Care Nurses Who Saved My Family and Marriage

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Dear Home Care Nurses,

We were a family on the fringe. I was barely hanging onto my job and my marriage. I wanted to do all of it myself. I wanted to be the best mom, the best wife, the best nurse and therapist and the best employee. Slowly, I watched it all start to slip away. I watched a child not progress, fall ill constantly and fall behind in every category of development. I watched my marriage crumble; we were mere roommates and barely acknowledging one another. And my job became a complete afterthought.

When I reached out to your company, I was at the very end of my rope. Drowning in a sea of hopelessness and feeling like the world was completely suffocating me, I begged you to help me.

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Asking for help is so hard. Knowing I couldn’t do it all was a huge pill to swallow. You came into my home and told me, “Why would anyone expect given your situation that you need to do it all.” Your words were so right. I’m not a medical professional. I don’t have experience with developmental delays, and I literally know nothing about helping a child overcome severe apraxia of speech and sensory processing disorder (SPD).

Assuredly, you told me your company could do it, and you would help us. I cried as I listed out my son Von’s diagnoses. The magnitude of everything we faced on several sheets of paper was overwhelming. I broke down in tears thinking about how alone I felt and how overwhelmed I’ve been trying to do it all. I took a leap of faith that day, and I decided to allow you into my home.

Since you started, our home has been organized, clutter-free, full of laughter and happiness. Von is a new child. He can speak more than 100 words, can drink from a straw, is able to express his wants and needs and he is learning to jump and climb. Every single day you each work so hard with him. You sit with him patiently while it takes him over an hour to eat, and you diligently apply all of his therapies every single day. He is guided with love and tenderness as each of you cheer him on. He waits for each of you to come to our home every day. His eyes light up when he sees your face as he walks down the stairs, and he loudly professes he loves you.

My marriage has also completely improved. We’re active in our church, and we work diligently on having time for ourselves. Your care allows us to have date nights, and my husband and I have remembered why we love one another so much. And my ability to focus on my job has improved. My employer has recognized my turnaround and praised my ability to move forward. It’s all because we finally have your help.

I know you could work at any other place. You could be in a hospital making a lot more money. You could be in a clinic with more stability, better benefits and a 401(k). However, you picked us, and you picked home care nursing.

From the bottom of my heart and from all the families like ours, thank you for making this choice. You saved my family and my marriage. You have allowed me to simply be my son’s mom without having to worry about his developmental delays, therapy needs and rigorous medical schedules and appointments. You help guide my choices with a fresh set of eyes, and you do so with love and compassion.

Our hearts are full this season, because we know without your hard work, we wouldn’t be here today. We wish you all the best this holiday season. And from the bottom of our hearts, thank you. We love you, and we can’t express our gratitude enough for helping our family and son. Your job may not draw in the benefits and salary of a hospital position, but I can assure you that you’re making a difference in the lives of an overwhelmed family every day. You’re a blessing to everyone you touch. Thank you, nurses.

Katie

Follow this journey on Von’s Super Hero Facebook page.

The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. 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 Share Your Story page for more about our submission guidelines.

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The 3 Words I Want Siblings of Children With Special Needs to Hear

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To the siblings who sometimes feel invisible, I see you.

To the ones who have celebrated Christmas and Thanksgiving in the hospital instead of around your dining room table, I see you.

To the kids who get shuffled from one family member to the next during hospitalizations, I see you.

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To the children who trade video games at sleepovers for blown-up medical gloves during hospital visits, I see you.

To the students whose parents have missed games, performances, concerts and school presentations, I see you.

To the kids who turn speech and physical therapy into fun games, I see you.

To those who have blown out birthday candles in hospital playrooms, I see you.

To the kids who share their houses with nurses and therapists, I see you.

To the students who have been picked up unexpectedly from school, only to find out your sibling has been taken to the hospital again, I see you.

To the children who have grown up too fast and have way too much medical knowledge, I see you.

To the “doctors-in-training” who give tube feeds, suction trachs, silence ventilators and clean hearing aids, I see you.

To the kids whose world gets turned upside down by a medical emergency, yet are expected to keep it together and be well-behaved, I see you.

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To those who must worry about how long you’ll have your siblings and wonder what life would be like without them, I see you.

I see you having a compassion others your age just don’t have. I see you unabashedly loving your siblings and being their fierce protectors. I see you trying to change the world’s perception of kids with special needs by reminding people not the use the R-word. I see you playing with your siblings and accepting them just as they are. I see you growing up to be therapists, doctors, nurses and special education teachers, because you have seen firsthand the difference these people have played in your sibling’s life. I see you taking on the role of caretaker as adults when your parents no longer can. I see you being thankful for the small things in life, because you understand those are really the big things.

So to the siblings of kids with special needs, thank you for all you have given up so your brother or sister can get the best care possible. We couldn’t do it without you. You are loved!

Follow this journey on Life as a Leach.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or 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 Share Your Story page for more about our submission guidelines.

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