The Promise I Made My Newborn as We Cried Together

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 “I asked the Zebra,
Are you black with white stripes?
Or white with black stripes?
And the zebra asked me,
Are you good with bad habits?
Or are you bad with good habits?
Are you noisy with quiet times?
Or are you quiet with noisy times?
Are you happy with some sad days?
Or are you sad with some happy days?
Are you neat with some sloppy ways?
Or are you sloppy with some neat ways?
And on and on and on and on and on and on he went.
I’ll never ask a zebra about stripes…again.”

                                                               — Shel Silverstein

My daughter Addie was born early. Three weeks early. I started having contractions in the parking lot of an Olive Garden while Frank Sinatra was singing on the radio, “Let’s take it nice and easy…” It was almost Halloween, and that night in the maternity department all that was on TV were old scary movies. Addie was delivered into this world in the morning “sunny side-up,” as they described it to me. It was not a dramatic delivery. The biggest issue initially was correctly the nurse who thought I said Addie’s middle name was “Tracy” not “Faith.” To which she responded “Oh, that’s so much better…” (Sorry to any Tracys out there.)

Addie was a little bit of a baby — tiny all around with little waves at the bottom of her hair. She struggled a bit with her blood sugar being low and then with feeding. She had some problems swallowing and latching on. She cried a lot. We found that the only way she didn’t cry was if she slept in something moving. She was trying to tell us something. We just didn’t know what it was yet. She was hospitalized two times within her first month of life, then again two months later. She had many specialists, many appointments and many hospital stays. After her third set of ear tubes, an adenoidectomy, a GI biopsy and a lung biopsy, it was determined that she had ciliary dyskinesia, a rare lung disorder treated a lot like cystic fibrosis. It means the cilia in her body aren’t all intact and can’t rid the body of things that would cause lung infections or ear infections. We also found out she had colitis. She was allergic to milk and soy (she’s 4 now and now not allergic to either thankfully). But Addie still cried. She had a lot of trouble feeding and eating and was delayed. Mysteries still lurked. 

I remember the phone call well. It was a Thursday morning at work. Her neurologist wanted to review her MRI. I didn’t have time to Google. I grabbed a piece of paper on my desk and started writing everything I possibly could. The paper had these words written sporadically: “Brain Malformation,” “Vascular accident?” “Trauma?” “May never know – result is the same,” “Static but unknown future,” “Mild,” “Unilateral,” “many small folds”, “unique pattern,” “may blossom with continued therapy,” “will know more as she grows,” “high risk of seizures,” “mild CP?” I needed the following: information and what to do specifically. I specifically saw the words “may blossom” and felt those two words were the hope given to us to have faith in the doctors and faith that the future would be bright.  

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I remember being in my bedroom. It was nighttime, and Addie was crying. For some reason, this night, the swing wasn’t calming her. The swing was supposed to be the lifeline. It sat next to my side of the bed. If I heard it start to slow, I knew to get up and change the batteries as soon as humanly possible.

This one night, the swing itself was working fine mechanically, but the swing’s magic was not working. So I did the next best thing, and I held her and paced. We walked back and forth across my room. At one point I started crying with her. I don’t know why. I wasn’t feeling sorry for myself. I know I was overtired. But it was something else. I couldn’t put my finger on it. We just cried together; we cried hard. I let myself cry with her. I don’t even know if she knew I was crying. But we had this long moment together of pacing and crying. I wanted so badly to help her. I wanted so badly to “fix” what was wrong. I didn’t know “what was “wrong” with Addie yet, but looking back I truly believe it was in that moment that I knew something was seriously going on, and I let myself cry. And Addie let me pace, hold her and cry. We let ourselves have that moment together. This was nothing monumental, but it was poignant to me. When she — and I — finally calmed, I held her tight and close to me. She was sweating, her heart was racing and I whispered lovingly into her ear, “It’s OK, Addie. Mommy knows there is something wrong. You don’t have to fight it; I will fight for you from this moment on. I promise. I love you as you are.” And just like that – poof! Like when you make a wish on a coin and throw it into a wishing well, I made this commitment to my daughter in her ear, and I let it go. And I never looked back. 

I later found out the actual diagnosis Addie was given was called “Polymicrogyria” or PMG. This means “many small folds.” I find it fitting; my Addie-bug is indeed full of many small mysterious folds — this is her personality. This makes sense.

Addie is now 4 and Audrey is 6. Addie is doing great. She has a service dog named Data and is in a Pre-K classroom in a public school system. Her dog goes with her to school. She has occupational, physical and speech therapy. She loves her big sister to pieces. She was diagnosed on the autism spectrum along with the other above diagnoses, but she’s excelling. I’m thankful for the day I let it go. I’m thankful for the day I accepted it all and moved with her and loved her for her — for all her unique stripes. To this day she hasn’t stopped moving, and I haven’t stopped moving with her.

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The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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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Why a Taxi Ride Taught Me an Important Lesson About Disease and Grief

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It was at the end of a short, intense visit to Memphis in June 2012, midway through my project. I’d been traveling the country, meeting people living with multiple sclerosis, hearing their stories, meeting their families and taking their photograph in candid moments.

That weekend was brutally hot and full of challenges. But one moment in particular served as a powerful lesson and turning point for how I understood illness and disability. The whole reason for my expedition.

All of the little moments from Tennessee, plus ones from Washington, New Mexico, New Hampshire, North Carolina and more, are part of a journey beginning a year after my mother’s death from a difficult 20 years with primary progressive MS. The road is coming to an end, I sense, as I am far different from the bitter, afraid and cloistered person I was during her life. After her death, I wanted to change that; I traveled the United States to see how other people felt about disease.

Read more about my photo project here: Enlightening Photo Series Tells a Deeper Story About Life With Multiple Sclerosis.

I sat in awe of each participant’s story, drank with them, celebrated their achievements and grieved their losses all in order to destabilize how we — strangers, the media, friends, me — understand the word “chronic.” There are no heroes in illness, or Brave Battles or any other “Reader’s Digest” smarm in my travels. There’s just wonderful people and new friends. Artists, scientists, athletes, parents who are not their disease. Their stories, collected in a book of portraits, will be completed this summer, and according to her Go Fund Me page, partial proceeds from the book will go to MS research.

The moment that served as an especially powerful lesson and turning point for me is one I have not shared yet. Perhaps because I, an opinionated atheist, have been reluctant to share its overt spirituality. Maybe because it was so early, so solitary, I imagined it. But I haven’t forgotten it.

It was the taxi ride back to the Memphis airport, a 5:30 a.m. balm. My driver stepped out to get gas, his unbuttoned shirt blowing open in the hot Southern breeze. As he pumped, I listened to the radio, his preferred Sunday morning station murmuring an evangelical program. The preacher’s story lasted only the length of time it took to fill the tank. It was so early, and silent, and it seemed like nobody else was alive but the driver and me. Maybe I was the only one who heard it.

Forgive me for lacking the preacher’s eloquence, but here’s what the radio said:

Two men sat fishing. One caught a huge fish, looked at it, threw it back. Caught another, inspected, threw it back. Then he caught a third, a tiny one, and held onto it. Bewildered, the other fisherman finally asked, “What’s going on? Why keep the little one when you catch these huge, magnificent fish?” The other man replied, “Because my skillet is only 10 inches.”

The congregation went so nuts at this, it echoed in the station’s parking lot from the open window. I jumped — I’d forgotten there were real people there, and he wasn’t just some radio ghost designed just for me. But they roared and clapped with understanding.

The preacher continued over the din. We fear the power of possibilities and the weight of greatness, he said. “We don’t decide it,” he crescendoed, “we serve it.”

I mean. That is a good story.

I don’t believe in God. I do believe in people, that we may fear what makes us great, that we limit ourselves and limit others without their permission. Neither are fair. Disability, illness, chronic, are just words. They are often painful, sad, frustrating, devastating words too; I’ve seen that in my own life and in the lives of those I’ve met.

Through their stories and their friendship, I finally saw we are more than our bodies, our grief. I finally allowed my mother into my heart. Too late? I am trying to make up for lost time. And while I have this body and this mission, I will continue to try.

Serve your greatness. It’s the only choice.

Read more about Nadine Friedman-Roberts’ photo series about multiple sclerosis on NadineFriedman.com.

Clarification: A previous version of this article stated that proceeds from her book are going to the National Multiple Sclerosis Society. According to her Go Fund Me Page, partial proceeds are going to MS research.

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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7 Easy Ways to Support Colleagues With Mental Illness

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May is Mental Health Month. This year it’s of special significance to me since I recently lost my brother Spencer, who lived with schizophrenia. It’s been heartbreaking.

Like many people with a mental illness, Spencer was unable to make a living. I know this contributed to his despair. It’s a shame because he was bright-eyed and intelligent and had so much to offer.

Chances are you have a colleague who suffers from a mental illness — probably silently, unbeknownst to others. The U.S. National Institute of Mental Health estimates that one in four adults has a mental health disorder. One in seventeen has a more serious variety like schizophrenia or bipolar disorder.

It may be the founder of the business where you work. It could be the CFO, who experiences bouts of serious depression; the creative director who’s doing her best to manage bipolar disorder; or the computer programmer who’s autistic. Maybe it’s you, and that’s a-OK.

It’s easier than you think to support these colleagues, even if you’re not sure who they are. Here are some simple things you can to do help:

1. Read up on mental illness — increase your awareness.

Check out National Alliance on Mental Illness. Learn about suicide preventionADHDAsperger’s syndrome and different types of depression.  

2. Post something in honor of Mental Health Month, even if it’s small.

It’s amazing how much a simple post or retweet can signal support and respect to your colleagues, especially those who suffer silently. Consider joining a NAMIwalk or adding your name to the Stamp Out Stigma pledge. Then post about it. Follow the #MentalHealthAwarenessMonth hashtag and retweet something. Do something, even if it’s as simple as sharing this article.

3. Improve the way you talk about mental health issues.

This may be the number one, most helpful thing you can do. Think twice before making offhand remarks about “going crazy,” “acting psycho,” being “schizo” or “ADD,” or saying that something is “making me want to shoot myself.” Here’s an excellent article with more communication tips. I’m still working on this, so feel free to offer other suggestions in the comments.

4. Ask!

If you know a colleague who lives with a mental illness, consider asking them how you might better support them or if there are any changes you can make to work better together. You might be surprised by how simple the suggestions are.

5. Improve your health insurance and work policies.

If you’re in a position to influence your health insurance or work policies, reevaluate them with the perspective of wanting to retain talented employees who live with a mental illness. Invest in mental health benefits. Again, small tweaks can make a big difference.

6. Respect different personality types. 

Think of this as emotional and neurological diversity. Just as a good teacher accommodates different styles of learning, create a sense of openness to different personality types and operating systems. By showing respect for different modes of working, you make it safer for people to bring their full talents to bear. You may find that it leads to better results.

7. Read this article in Harvard Business Review. 

It’s a brave, honest account with some practical suggestions.

“There are no simple answers for organizations. But as someone who has suffered, sometimes silently, from a mental illness for more than 30 years, I can speak personally about how it can be managed on the job. I have worked for world-class consulting firms and publishing companies, both in Europe and America. Life in a hard-driving corporation may not have the life-or-death responsibilities that commercial pilots must bear, but it can be just as stressful.”

In sharing these tips, I want to be clear that I’m not advocating being soft on business results or boundaries. Issues around mental illness are complex — in the workplace and in general. The onus is on those with a mental illness to seek treatment.

But it’s on the rest of us — business owners, colleagues, managers — to provide a workplace that’s supportive. It’s not just a moral imperative, it’s smart business. The productivity upside is huge.

For many people, a job isn’t just a means to make a living but core to their dignity. It’s a livelihood in the fullest sense. If some small action makes it easier for them to hold on to that, why not do something?

So take a step. You’ll be helping someone’s brother.

What other simple steps can people take to support colleagues with a mental illness? Add to the comments below. You can follow me @jeffgiesea.

If you or someone you know needs help, please visit the National Suicide Prevention LifelineHead here for a list of crisis centers around the world.

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When a Teacher Said a Photograph of My Relative Would ‘Scare’ the Students

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It started over dinner when my daughter, Caitlin, was deciding what to bring in for “Show and Tell” at school. Remembering her recent visit to my office, she asked if she could bring in the poster of her cousin that hung on my door. Excited about her decision, I agreed and told her I would get it for her the next day.

The following afternoon, I carefully pulled the tape from the back and rolled up the poster of Nick in his Team USA uniform with gold and silver medals hanging around his neck. I tucked it into my bag and headed home. That night after dinner, the kids argued over who would get to share the poster first. My son, Nolan, who was in third grade, stated that he wanted to take the poster to school on Thursday because Caitlin did not have “Show and Tell” until Friday. This seemed like a reasonable request, but I said I would email their teachers and wait to hear back from them.

In my email, I sent links to articles about Nick’s accomplishments and video clips from the Beijing Games, along with a photo of the poster. Nolan’s teacher responded that night saying she had shared Nick’s story with her family and how they were all inspired by his success. Yes, like many world-class athletes, his story is inspiring.

I didn’t hear from Caitlin’s teacher until the next morning. In her email, she explained that she had forwarded my email to the principal and that she was concerned the poster would “scare” the children. I was appalled.

Through Caitlin’s eyes, Nick Springer is her cousin. Nick Springer is a gold and silver medalist in the 2008 and 2012 Paralympics. Nick Springer is a world-class athlete who plays wheelchair rugby. Nick Springer is a survivor of meningococcal meningitis. Nick Springer is a quadruple amputee.

Nick Springer Spin

Unfortunately, the only label her teacher could see was the last, and she found it frightening. The next day, I received a call at work from the school principal. Here is a bit of the conversation from my side:

It is not if Caitlin will share the poster, but when.

How can we be OK with sharing images like Captain Hook with young children, yet we are afraid to share a photo of someone who represented our country in the Paralympics?

I find it more frightening that we have an educator who feels unprepared to embrace diversity in her classroom. If she can’t handle this conversation, what other conversations aren’t occurring?

On the following Friday, with the support and guidance from the principal, Caitlin shared the poster. And, how did her classmates react? Through their eyes, her cousin, Nick, was totally awesome!

As a former kindergarten teacher, professor of education and parent of a child with an exceptionality, I realize we have a lot more work to do in promoting the inclusion of all people. I strongly believe we need to begin our efforts to do so with young children. We should not shield their eyes from seeing the world as it is or avoid challenging conversations around the dinner table or in the classroom. Through rich dialogue and diverse children’s books, we can share the beauty in differences and the abilities in disabilities.

Then, through their eyes, the world will become a better place.

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A version of this post originally appeared on Jen Stratton, Ed.D.

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5 Essential Tips for a Soon-to-Be Special Needs Mom

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I walked into the conference hall and stopped at the welcome desk.  After getting my packet and name tag I headed into the main lobby. I saw familiar faces and we exchanged hellos. DD (my nickname for my dear daughter) was with me and was working the crowd already. I made my way to the hors d’oeuvres, made a plate for DD and looked for a place to sit. I spotted an empty seat and another familiar face. I sat there… and then I saw you.

You were making your way over to the same seating area. Suddenly I didn’t feel so tired.  I smiled at you and asked, “Are you feeling okay?”  You said, “Yes. About three weeks to go,” with a smile and a rub to your stomach.

“Is this your first child?” I asked.

“No,” you said. “I have two others. This child has Down syndrome and we came to the conference to get a little information. Trying to prepare, you know?”

You smiled at me. I smiled back and nodded my head in agreement. I knew very well. I knew very well.

After talking for a bit you told me you were a speech therapist and you knew sign language as well. My heart smiled more than my face ever could. “You will need these skills,” I thought to myself. I told you you were doing a great thing in trying to learn as much as possible beforehand. “The best bit of advice I can give you is to live for each moment because they will change,” I said.

Perhaps you knew what I meant. You will certainly find out very soon. I looked up and DD had yet again abandoned her chicken wings because there was music nearby. Before I knew it DD had hijacked the opening reception. You smiled and laughed with me.

These moments are the ones I speak of. Here are a few more nuggets of wisdom I have gathered over the years.

1. Don’t be afraid to cry.  There will be times when you cannot turn the faucet off. Don’t try. Let those tears flow freely. They will give you strength you didn’t think you had. These will not always be tears of sadness or of the unknown. They will change as your little one grows. Your tears are nothing to be ashamed of. We’ve all been there.  Sometimes, I’m still there. Know it’s OK and don’t let anyone tell you otherwise.

2. Parent in the present. I noticed your name tag was pre-printed. You registered beforehand. There will be times when your best laid plans will be thwarted due to some unforeseen opponent you may never discover. That’s OK, too. Give your little one what he needs at the moment. Follow his lead. Be a hug ambassador. Make the rules as you go along. This journey will be more like your previous parenting experiences than not. The small nuances that set them apart may seem vast, but remember your efforts will always pay off in some way. You will doubt yourself at times. Know it’s OK and don’t let anyone tell you otherwise.

3. Family doesn’t always mean family. There may be times you feel misunderstood by blood relatives and friends alike. They may not understand why you cancel plans at the last minute or can’t return a phone call promptly or couldn’t go to a specific restaurant for dinner. Or why your phone has twelve specialists on speed dial. Or why you may get to a function late. Trust you have a new family of people who get it.  We understand everything and more without a word being said. Know it’s OK and don’t let anyone tell you otherwise.

4. Accept help. Your husband offered to take a photo of me and DD. Instinctively I said no at first, never wanting to “bother” someone. I’m a culprit of this myself, but it’s important to know you can’t do it alone. There are angels dispatched among us to help. Let them. They may not be in the form you think, but let them. You will need them. Know it’s OK and don’t let anyone tell you otherwise.

5. Enjoy the ride. I sat next to you again the next day in one of the workshops. You seemed tired. Get ready because it’s just beginning. Just know this is the best tired you will ever feel. You’ll be great. Know it’s OK and don’t let anyone tell you otherwise.

Welcome to the family, RK.  Nice to meet you.

A version of this post originally appeared on Countdown to K.

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4 Things Not to Do (and What to Try Instead) When You See a Child Having a Meltdown

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For many parents of children with special needs, public meltdowns are a fact of life. To better understand what does and doesn’t help parents when their children have public meltdowns, we reached out to our Mighty parents via Facebook.

Here’s what we learned:

1. This one may seem obvious, but don’t stand and stare.

When you notice a commotion at the grocery store or park, it can be difficult not to stare at first — especially if you aren’t used to being around children. But to parents who are busy caring for a distressed child, staring strangers only make a bad situation worse.

“I wish people wouldn’t act like they’ve never seen or heard a child cry until they laid eyes on my child,” Anna Perng wrote on Facebook. 

Instead — If you feel unsure of what to do, just keep walking.

This may seem counterintuitive, but many parents say that other than offering a quick smile or word of encouragement, the best thing you can do is ignore what’s happening. “Just keep it moving and let me do what I need to to keep my son calm,” Mandy Mandy said on Facebook.

Deborah Kline, whose child has autism, said she’d prefer the situation not attract any more attention than it already has. “Just keep doing what [you] were doing, as if it’s not happening,” she wrote on Facebook.

2. Don’t offer unsolicited advice or comments.

“Comments like ‘Ahh, she’s not happy!’ or ‘You need to put a leash on that one!’ are frustrating,” Melissa Cote, whose daughter has autism, said on Facebook. “Like we don’t already feel bad enough that our child is having a hard time. Now we have to wonder what others are thinking, too.”

Heather Rhone agreed. “Unless you’re going to give me a sympathetic smile as you walk by without saying or doing anything, I really don’t want you to do it,” she wrote on Facebook. “Once my child hits a certain point, there’s no amount of talking, admonishing or reasoning that’ll help. She’s got to work it out herself. ‘Helpful’ strangers are about the least helpful thing during a meltdown.”

Instead — be supportive and smile.

It’s simple, but sometimes the best thing you can do for someone in a difficult situation is smile and say something encouraging.

“Probably the best thing you can do is offer a sympathetic smile,” Elizabeth Pasten wrote on Facebook. “The most memorable people have said things like, ‘You’re doing a great job’ or commented on my patience and the techniques I use to calm down my son, like the deep pressure massage or tight hugs.”

I had a gentleman smile and say, ‘You’re doing a great job, Mom,'” Roberta Johnson said on Facebook. “I almost cried, it meant so much!”

3. Don’t try to help without asking first.

When you see a parent and his or her child in distress, it can be instinctual to immediately do what you can to try and help. But when we posed this question to our Facebook friends, several parents said they would prefer if people didn’t try to intervene without asking first.

“I never notice what others are doing or not doing because I am so focused on him,” Jennifer Brooks, whose son has autism, wrote on Facebook. “But one time, someone did intervene and while it distracted [my son], it also didn’t exactly help. I would have preferred they hadn’t done anything.”

Instead — ask first if the parent needs any help. 

Many parents don’t appreciate unsolicited help, but offering it can go a long way. Even if there isn’t anything you can do, your care and concern are what matter most. And sometimes, there’s something simple you can do to help — like assisting a frazzled mom with her grocery bags or watching one kid while the parent tends to another.

“I know I’m hyper-focused on my kid in that moment, but if my hands are full of bags or my purse is on the ground, I would love for someone to help me with my stuff, not my child,” Meghan Hanley wrote on Facebook.

In her post “When My Son Had a Public Meltdown, Everyone Stared and Judged. One Woman Didn’t,” Tanya Brodd wrote about taking her infant and 2-year-old with autism to the mall. Her older son Andrew had a major meltdown early in the trip, but Brodd was unable to console him while also holding her baby. Then a woman approached her and asked if she could take the baby for a moment while Brodd tended to her other son.

“I truly don’t know what I would have done without the help of this sweet woman,” Brodd wrote. “While others were judging me, she helped, and her compassion brings tears to my eyes to this day.”

4. Don’t assume the child is just being disobedient or refer to him or her as a bad example for your own children.

“It’s nice to hear [another parent] telling their own kids that mine is just having a hard time right now instead of being naughty,” Beth Klingbiel wrote on Facebook.

Jennifer Lovy, whose son has autism, agreed. “It drives me crazy when parents use Evan’s meltdown as an opportunity to show their child how not to behave or to reinforce their child’s exemplary behavior,” she wrote in her piece, “What to Do (and Not Do) When Your Child Sees Mine Having a Meltdown.” “I can guarantee my son isn’t upset because I won’t let him have a cookie or because it’s time to leave the playground. More likely, he’s bothered by a sight, sound or smell that you or I barely notice but to him is an all-out assault on his nervous system.”

Instead — if you’re with children of your own, talk with them about why the other child might be having a hard time.

Some parents, like Lovy, say they would prefer if parents explained what was going on to their kids rather than shushing them or avoiding acknowledging the situation. “The next time you see a child with ‘bad’ behavior or physical differences, it’s OK to use him or her as a teaching tool. Just do it the right way,” she wrote. “By avoiding their questions you’re actually showing them there’s something wrong. Instead, use this as an opportunity to educate your children; often, a simple explanation will suffice.”

Editor’s note: Some responses have been edited and shortened.

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