To the Woman in the Grocery Store Who Turned Out To Be My Guardian Angel

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Two and a half years ago, over Father’s Day weekend, I went to the gym and then out to buy steaks. I’d been having short, intense headaches, but at the moment, I felt great.

I went in the store with two of my children, the third choosing to sit in the car right out front. I went to get the steaks, and all of a sudden, my tongue went numb. I felt an icy line separating my brain from my head. I couldn’t speak; I started to shake and drool.

I went to the side of the store and held onto the counter. I sank to my knees to signal that I needed help. I heard my kids start to laugh and then start to cry. A voice said, ” I think something’s going on over here.” A woman, my angel, came over to me.

She started issuing instructions. Someone to take my kids away, someone to call 911, someone to look at my ID and find my name. She told me who she was and that she had some medical training. She gave me a tissue because I was drooling and held my hand. I kept trying to speak to let her know I had another child outside, but she stopped me, telling me I was only getting more upset because I couldn’t talk. Then I heard my oldest son tell someone about his brother and that my cell was in the car and he could call my husband. My angel called my husband, helped get me and my boys to the back room and stayed until the EMT arrived.

I was later diagnosed with a brain tumor and so far am doing great. I’ve had great doctors, my best friend works in oncology and paved my way for me and a million people support me. But that woman — she will always be part of my story. She kept me and my kids calm in the scariest of situations. She held my hand. I will always be grateful to her.

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My support system.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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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To the Man at the Auto Shop Who Asked About My Preemie Baby

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Seven years ago, my daughter was born three and half months prematurely.

Every day was a battle for her, and every day was a battle for us financially. We had next to nothing and were living at The Ronald McDonald House in Colorado Springs, Colorado, and I was a thousand miles overdue for an oil change.

I found the cheapest place to spend my last $30 and naturally had to decline any extra services. As I waited for my car to be finished, a gentleman asked about the photo of a baby on my dash. I explained the circumstances of my daughter’s birth and fight, and he said we’d be in his prayers.

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As I went to check out, I was told our bill had been covered. If I’ve ever needed help, it was right then, and I believe God sent me to exactly the place I needed to go.

I’ll never forget that man and am reminded of him any chance I get to pay it forward.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

Want to end the stigma around disability? Like us on Facebook.

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These Photos Are a Reminder That Our Loved Ones With Alzheimer’s Are Still People

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“Nana said, ‘Bill’ today!” my mom exclaimed before she even had both feet inside the house.

She’d just gotten back from spending the day at Mary Manning Walsh Home, the nursing home on Manhattan’s Upper East Side, where my grandma lived for the last few years of her life.

It shouldn’t have been a big deal that an 80-something-year-old woman said her late husband’s name, but for us it was.. My nana had not uttered a lucid sentence in about two years. Since her dementia diagnosis and two mini strokes, she barely reacted to those around her, including her three children. She gurgled off syllables that made no sense and needed to be hand fed. She wasn’t Nana, really.

Except that she was.

Her mind was slipping away, but with that one word — “Bill!” — we remembered she was in there. She was still Nana, a mother of three, a woman in love with the husband who stood by her side until his dying day (I’ve written about their relationship in more detail here, if you’re interested).

With Julianne Moore’s Oscar win and important acceptance speech, the film “Still Alice,” which follows a woman living with early onset Alzheimer’s disease, rocketed into the spotlight. I’m thrilled about this.

I’m also thrilled that the film’s title inspired the Alzheimer’s Association’s most recent Twitter campaign, where followers send in photos of their loved ones living with dementia and Alzheimer’s disease. With each picture, users include a hashtag like #StillMom or #StillPopPop. I love it because even though my nana passed away in 2010, it’s comforting to think she didn’t die as someone else. Her mind’s deterioration was sad and painful and at times even cringeworthy, but she was still Nana.

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Nana with her five grandchildren.

So to me, and I’m sure to many others, the hashtag is more than a social media trend or this week’s buzzword. It’s a tribute to the ones who won’t be around to see a cure for Alzheimer’s.

It’s a reminder that when they died, they were still nanas and moms and brothers-in-law and best friends and husbands. They were still people.

Take a look at some of the submitted photos below and follow the campaign on the Alzheimer’s Association’s Twitter page here.

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When I Realized My Daughter’s Feeding Tube Isn’t the End of the World

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On Wednesday, my daughter, Celine, had a nasogastric tube (NGT) inserted. The week before, her speech therapist called to tell me that after reviewing Celine’s Modified Barium Swallow (MBS), she learned that my daughter was aspirating liquids and would probably need temporary non-oral management for them (she was fine with purees, thank God). I stubbornly said no NGT before the idea was even mentioned. The speech therapist simply said we would discuss that next time we met. 

Screen Shot 2015-02-23 at 3.59.09 PM A few days after, Celine woke up with a fever and a cough. When your child has muscular dystrophy, a fever and cough are not to be taken lightly. I rushed to the nearest pediatric emergency center only to discover that she had an upper right lobe collapse (the second one in three months) and an infection in her lungs, the third one in three months. I called the speech therapist, begging for an NGT.

The day she got the NGT inserted, I cried. I cried a lot. I felt like I was in mourning, though I’m not exactly sure what I was mourning. I initially refused the NGT because, well, I’m human and I’m vain. I didn’t want a tube across half of my daughter’s gorgeous little face.

I also think in some ways, until that point, I was in denial. Celine is almost 18 months old, but she looks like she’s 10 or 11 months old, so when people see her in her stroller they just smile at the cute baby. Nobody thinks there is anything “different,” so I guess I’ve never had to face the reality of her condition. Now, she has an NGT. The whole world will know. I was pushed out of my happy little world of denial.

I spent most of that Wednesday in tears. Every time I looked at her, my eyes would well up. Then, I read an article about a mom who celebrated her daughter’s wheelchair day, and I felt silly. I felt like a hypocrite. I felt like by being so sad, I was letting my daughter down. How will she live with her condition and accept it if her own mommy can’t? I’m all about doing everything I can to give her a comfortable future, but I am her present. If she doesn’t get a comfortable present, where will the comfortable future come from?

So, I dressed up my little girl and took her and her sister out for dinner. We finished our dinner (without anyone commenting on the NGT!) and walked into a recently-opened gourmet foods market to take a look. A man walked by and actually stopped to stare. Celine, being the friendly and social toddler she is, smiled and said, “Hiiii! Howa yoooo?” The man’s face went completely white, and he rushed off. It reminded me of pranks I’ve seen on TV where a human poses as a statue and, when people stop to admire the work of art, the human moves and the admirers freak out. He could have at least answered her or asked me why she had that “thing” across her face. I would have been more than happy to answer.

Celine will have her NGT for the next 12 weeks while we do intense VitalStim and swallowing therapy. Then, the MBS will be repeated. She cleared an MBS at 9 months, so hopefully she’ll clear it in another 12 weeks.

But if she doesn’t, we’ll find another solution and keep moving. A feeding tube is not the end of the world.

 

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‘American Horror Story’ Actor Ben Woolf Dies

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Screen Shot 2015-02-23 at 5.12.41 PM Ben Woolf, an actor with dwarfism who played “Meep” on the FX TV show “American Horror Story: Freak Show” died on Monday, February 23, Variety reported. He was 34.

Woolf was hit by an SUV while crossing a street in Hollywood the night of February 19. The 4’4″ actor sustained a head injury from the car mirror, and was taken to Cedars-Sinai medical center in critical condition, TMZ reported. He died from a stroke after remaining heavily sedated throughout the weekend, according to Us Weekly.

“Ben was one-of-a-kind, and will never be forgotten,” said a statement from Woolf’s public relations agency, ZTPR, according to Variety. “The time we all shared together will be remembered forever.”

After the news broke, Woolf’s colleagues and friends paid tribute to his life on social media, including his “American Horror Story” costar Jamie Brewer:

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In 2014, The Mighty covered how Woolf candidly spoke about dwarfism, his acting career and his day-to-day challenges.

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Why My Daughter’s Stick-Figure Drawing Brought Me to Tears

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Just before Thanksgiving, the stars aligned and, just like eHarmony for the type 1 diabetes (T1D) world (dHarmony?), we met a sassy blogger online named Libby. A 20-something who also happens to be pancreatically-challenged, Libby asked if she could interview us for her blog, and we were pumped (pun totally intended).

I told my daughter, Isabella, that a new friend with T1D wanted to interview her, which set off a string of questions about who this mystery girl was, what kind of ice cream she likes and whether or not she’d seen “Frozen.” She was excited, and I was, too.

After our interview with Libby (which was chocked full of so much awesome that I’ll let you read it yourself), we decided we wanted to send her a thank you card and one of our fab “Inspired by Isabella” t-shirts. Of course, being 4 years old and looking for any excuse to get marker on my nice, Amish-made table channel her inner Warhol, Isabella said she wanted to make the card.

The card turned into half a dozen drawings and notes, dictated letter-by-letter by me, to our new friend, Libby.

“Does ‘Libby’ begin with an ‘L,’ mom?”

“Are there one or two ‘O’s in ‘love’?”

“How do you spell ‘best friend’?”

And that right there made my eyes start to leak.

Isabella brought me her stack of notes and drawings, and as I thumbed through them, I stopped at one. It was a drawing she’d made of her and her new BFF, surrounded by flowers and a rainbow, their names scribbled to indicate who was who.

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It was hard not to notice the numerous shapes Isabella had drawn up and down the two figures, seemingly randomly.

“I love this drawing, Isa. Can you tell me what these shapes are on you two?”

“Those are our sites… for our pumps and ‘cgms.’”

And I could feel my heart sink.

But then I noticed something else. Smiles. Both the stick figure image of Isabella on the paper and the pigtailed toddler standing in front of me had smiles spread across their faces.

And I knew.

I knew Isabella had found someone else she could draw who also had shapes running up and down them like a highway of reminders of this disease. She was smiling because she had found someone to look up to and to show her she shouldn’t be ashamed of these shapes. And, while her shapes will never define her, they are a part of her story.

Thank you, Libby, for helping Isabella embrace her shapes and for sharing her journey.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

Want to celebrate the human spirit? Like us on Facebook.

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