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


“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


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


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.

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


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.

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To the Parents in the Waiting Room Who Looked Away From My Child


When my son, Richie, was a baby linked to a ventilator and a feeding pump, I would get pitying looks and stares as I took him from place to place. “Poor thing,” people would say, as if his entire existence was about those machines. I brushed it off and realized people didn’t mean any harm — they just didn’t know how to react when they saw a baby hooked to life-support mechanisms.

As he has gotten older, those looks have changed. People glance in his direction and then quickly avert their eyes as if they’re ashamed of wondering about him, ashamed of their own curiosity. They avoid staring, but at the same time, they ignore a child who loves to interact and be friendly. Inline image 1

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A few months ago, we visited Richie’s pediatrician. The waiting room was crowded, and Richie was enjoying watching the kids in the room. He was laughing loudly and squealing with joy. The parents and kids took notice of the noises he was making and turned to look but then they quickly looked away. It was like they wanted to pretend he wasn’t there. I felt ill, and I couldn’t wait to get out of there.

My emotions about the visit confused me.

Not only was I bothered by their reactions, but I was annoyed at myself for being bothered. Why did it matter what these strangers thought of my son? Why did it get under my skin?

I spent some time examining my reaction and trying to understand my feelings. On the one hand, I’ve never liked all eyes focused on me, so that was one reason for my discomfort. But what was most uncomfortable was knowing that whatever those strangers were thinking about my son wasn’t the whole picture. Yes, he was shouting out in public. He’s 3 and big for his age, so I knew the people in that room probably made assumptions about his cognitive ability and his behavior. I knew they were wondering “What’s wrong with him?” I knew what they were thinking because, in a time that seems long ago, I would have thought the same things.

I was uncomfortable not only with the way people reacted to Richie but also with the realization that I once would have done the same.

What my son has taught me and what I wish others knew is a moment in a child’s life — a reaction or noise or behavior — is not the sum of who that child is or who that child can be. When we choose to engage and resist the urge to look away, we have the opportunity to understand the complexity of another person’s journey.

Talk, ask questions, learn. See the human being in front of you.

Whatever you do, don’t just look away.

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Why Making Choices for My Son Grew Harder After His Diagnosis


There’s a storm coming into our valley, and it’s windy. We desperately need snow or rain, and I hope the wind is not all sound and fury, signifying no precipitation. Fences and patio furniture have blown over, and on our driveway the feathery evidence of a pigeon having recently met its end by owl? hawk? cat? has disappeared.

When the weather is less than perfect, I walk the dog on the cart paths of a neighborhood golf course. I look for the flags that let me know whether golf is in play or not, and when I don’t see them, we enjoy the winding path and beautifully kept landscape.

Today the flags were up, which was surprising. Why would a golfer choose to play golf in 30 mph winds, with gusts up to 70 mph? For the challenge, maybe?

People who regularly read my blog will remember that I used to work outside the home in a position that required travel. Wind is not uncommon in our valley, and I frequently flew home in windy conditions. I landed at my home airport hundreds of times, and there was usually wind turbulence. It wasn’t anything to worry about; it was just what was normal. Having experienced the pattern over and over, I was familiar with the usual angles, rate of descent, speed, bumps, etc., of a landing.

One night the winds were bad, and the flight was not following the pattern. We were too high for how close we were to the airport, the angle was wrong, the speed was too fast. I was looking out the window muttering to myself “this is not right, this is not right” when the pilot aborted the landing, pulling us up high and hard. We flew back an hour to the airport we’d just left.

Other planes had landed before our attempt, and other planes landed after our attempt. The pilot of our plane was empowered to make the choice whether to land or not, and he’d chosen to abort the landing and return to the airline’s hub airport.

The next flight home was delayed for hours until the wind decreased, and when we finally boarded again, I’d been upgraded to first class. Someone who’d had that seat had chosen not to take the next flight.

Our lives are a mosaic of our choices. To golf or not to golf. To land or not to land. To fly or not to fly. When we make choices we must analyze the relative consequences and benefits of each choice as best we can, though we don’t know the outcome.

We follow the estimation of good and bad results like climbing out on tree limbs. If I do golf, I’ll maybe have an epic game or a maybe a ball will blow through someone’s window. If I do land, we may have a good but rocky landing or maybe everyone’s day will end badly. “Two roads diverged in a yellow wood…

We learn from when choices go well and more often when choices go badly. That 20/20 hindsight is a powerful source of experience. Regret is also a compelling teacher — both the regret for a choice made that you wish you hadn’t made and the mourning of the road not taken, even when the choice made was good.

Over the years I’ve learned to not only analyze the relative consequences and benefits of each choice and draw on my experiences from previous choices, but to also include in decision-making the price of regret and awareness of the mourning.

Since choosing to become a parent, I’ve made choices both as the parent of a neuro-typical child before his diagnosis and as the parent of a child on the autism spectrum after his diagnosis.

The choices made as a parent of a child on the autism spectrum have been harder.

“Why harder?” one might ask. It was the same child, before and after — why would the choices be different?

Our child’s diagnosis required that we see again everything about our child through a new lens. A lens which was unique to him only. We had to redefine our own experiences and could only marginally utilize the experiences of others.

Harder because there was so much less information to draw on to analyze the relative consequences and benefits of each choice.

Harder because the 20/20 hindsight frequently didn’t add to an accumulated experience on which we might draw to make the next choice — there were too many outlier events. The picture was so much bigger than we realized, and it’s taken years to piece it together into a pattern that we can use to support our child.

Harder because the emotional cost of the regret and mourning felt higher.

It’s truly been the road less traveled.

Follow this journey on Autism Mom.

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