Ilyce's two sons.

To Those Who Believe 'If You Don't Have Health, You Don't Have Anything'

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The other day while I was watching my healthy 13-year-old son at his nightly wrestling practice, I was reading something online that made me start crying. Another parent asked me if I was OK or if I needed help. I quickly explained that I had just read something really sad online about a very sick child. This dad is new to our team and he didn’t know about my other child (my “sick” child), so I proceeded to tell him about Max. I explained that I had been reading about another child with the same disease who wasn’t doing well and it made me sad for the other family. I also explained how grateful I felt to have my own son alive and relatively healthy at 18 years of age.

Ilyce's two sons.
Ilyce’s two sons.

I thought my description of Max’s happy life would lighten the mood. I gave the usual details about all the experimental treatments Max has received and how he has defied the odds. I thought that my glowing love-filled account would make this concerned wrestling dad see the beauty in Max’s wonderful life.

I showed the dad pictures of Max playing buddy baseball, riding a horse, smiling and laughing. I tried to let him know that it was OK — that I was OK and that Max was OK. But absolutely none of this seemed to register. Not one picture of my smiling boy got through to this man.

The dad looked at me and said, “Well, if you don’t have your health, you don’t have anything.”

I usually just let comments like this roll off my shoulders because some people just don’t get it, and they possibly never will. He saw straight through the beautiful child and only saw a wheelchair.

What would I say to people who believe that if you’re not healthy, you have nothing?

I would say, “No, that’s not true at all.”

Without perfect health there is survival, life, beauty, love, acceptance and a desire to be on this Earth for as long as possible, even in a “less than perfect” body.

Just because a person may live with an illness visible or otherwise doesn’t mean they have nothing, or that they are nothing. There are people fighting to be here, fighting for the life others might not see value in. People that might not appear “valuable” to you are cherished members of their families and productive members of their communities who happen to have some sort of illness.

I compare caring for my son to taking care of a beautiful garden. Some children might be more like prairie grass, lower-maintenance and growing easily with little specialized care. Prairie grasses are hearty and sturdy with wildflowers springing up effortlessly. Prairie grass is meant to survive on its own and spread throughout the land for everyone to see and admire. It is beautiful, wild and can survive without much help.

My son is more like a garden planted in a hostile climate where specialized care is necessary. My garden can grow, thrive and even produce beautiful flowers. But this type of garden needs an expert gardening crew to make sure all the conditions necessary for survival are met and maintained. This garden will not be wild and spread throughout the land because it will need to grow in a beautiful greenhouse. People can still admire the beauty, care and love that go into maintaining this delicate garden. This garden may be high-maintenance and may not survive on its own; it needs constant care. But the care is done out of love.

Some of the most beautiful flowers can require the most care, and they may only bloom for a short time.

Life is a good thing; it’s beautiful and fleeting. Life is something to be marveled. Some lives may seem easier than others, but all life has beauty and value if you choose to see it.

The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about you or your loved one’s disability or illness. How did you react, and what do you want to tell people who hold this misconception? Check out our Submit a Story page for more about our submission guidelines.

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18 Powerful Messages for Anyone Who’s Been Bullied for Being Different

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Sometimes the things that make us so wonderfully unique are the very things bullies attempt to make us feel bad about. In the moment, it can be hard to recognize the lack of value in their hurtful words. It can be hard to tell yourself — and believe — what they’re saying isn’t true.

We teamed up with Soul Pancake to ask our Facebook communities this: “What would you say to anyone who has been bullied for being different?” The responses are a powerful reminder about what is true: our differences can be our strengths, and bullies don’t get to decide who you are or what you’ll achieve.

These are just some of our communities’ responses. We hope their messages resonate with you.

1. “Hurt people hurt people. Most bullies are treated badly in their own lives and are just lashing out at the nearest target. It’s not you, it’s them. You are you, and you are amazing.” — Maxine Sinda Napal

2. “Find something you love to do. Do it to the best of your abilities. The feeling you’ll get from achieving milestones you set for yourself can drown out the ridiculous judgments from other people. It also empowers you to be you.” — Ben Altair

3. “The world is a better place for having lots of different types of people.” — Kimberly Matthews

4. “When you’re different, people are actually afraid of you. Not in the sense that you’re scary, but in the sense of the unknown. They don’t know how to handle you, so they bully you to get you to conform to what’s ‘normal’ so they can feel more comfortable again. Make people uncomfortable; be different anyway. Find people who do accept you and love you; those are the ones who will help you grow like the wildflower you are. And if you’re being bullied and feeling sad/angry/depressed, one of the bravest things you can do is reach out for help.” — Kristen Dolan

5. “Different is beautiful. Never, ever forget that.” — Miriam Gwynne

Two kids sitting outside
Photo submitted by Miriam Gwynne

6. “Your normality is not theirs, and that’s OK. Your battle is important, and you’re fighting to stay strong. Don’t let them take that away from you.” — Sophia Trimble

7.Don’t let what other people think of you stop you from loving yourself. Your quirks, what makes you different, is what makes you special. Embrace it.” — Kathleen Gagnon

8. “Your differences are what make you unique, strong and free you from the prison of conformity. If someone doesn’t appreciate your differences, then they are too low on the mountain to see how great you are at the top.” — Madelyn Heslet

9. “Being called ‘weird’ is like being called ‘limited edition,’ meaning you are scarce and therefore worth a lot!” — Tanya Leavitt

10. “Always remember that people make fun of the things they don’t understand in other people. And those things they poke fun at are the things that make us unique. Bullies are everywhere in life, and they become more difficult to recognize the older you get. But they will always do the same thing and that’s make you realize that you are special and unique. I wouldn’t trade my uniqueness for anything in the world.” — Matthew Chaulklin

11. “It sounds cheesy, but it does get better!” — Serina Crawford

12. “I’ve been there myself. Try and get together with likeminded people, build your own circle of friends and stand up for yourself. It may be hard at first, but you will become stronger in the process.” — Jan Ett

13. “Everyone is different in their own way, even those who bully. Those who bully often don’t see the beauty in differences and maybe not even themselves. Anyone can pretend to ‘be perfect,’ but there is no such thing. Humanity is full of differences and mistakes, so don’t change or get discouraged because you aren’t like someone else. You are who you are because you are meant to be who you are, and no one can replace you. Be proud to be different, and in time, you will realize how much you have made a difference in the lives of others, especially in those who bully you.” — Danielle Myers

14. “The issue is to accept who you are and revel in that.” — Mitch Albom (photo submitted by Heather Kapp)

A photo of the I'm Kind of Awesome journal with a copy opened to a page that says, "The issue is to accept you who are and revel in that"

15. “Yes, it hurts, and yes, it isn’t fair or right. One day you will see their ignorance and fear has made you strong and capable and amazing.” — Brenda Raner

16.Don’t ever let them feel like you are less worthy because of your differences. Find someone (anyone) you trust to talk to about your experience. Find something you’re good at and concentrate on getting better at. Know that even though it is really hard right now, it will get better. You are important and unique, and no one can offer exactly what you have to offer this world!” — Sara Blazar Sharpe

17. “You might feel helpless, and that no one really cares. However, the person who really needs you the most may not have even met you yet. Keep strong. Keep your head up. Fight with every fiber of your being.” — Wendy Jonas

18. “I have cerebral palsy (CP)… People made fun of my walk [and] refused to include me in games at recess etc. In fifth grade, I started explaining why I was different and honestly, most kids had never understood. After that, things became much better and even still if people stare or make unkind remarks, their opinion now means very little to me. I made my Facebook awareness page three years ago and A Stairway To The Stars Heaven’s Journey With CP now has over 7,500 friends who help me prove different is beautiful. I started doing pageants again and hold the title Miss Shining Star 2016. Never let anyone make you feel you aren’t enough. You are perfect just the way you are!” — Heaven Ramsey

Watch SoulPancake’s video, “Bullied: People Share a Message With Bullies From Their Past”

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To Those Who Wake Up and Put a 'Fake Smile' on Their Face

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Many people with chronic illness or mental illness can relate to waking up every morning and having to put a fake smile on their face. I do it as well. But recently, I stopped to ask myself a question.

Why?

Why do we use the amount of time and effort it takes to pretend to be something we aren’t? Why do we pretend to be what we wish we were, only to drag ourselves further from our dream?

I thought about this a lot because I do it as well. What I realized is this:

I think we push ourselves to act as if we are something that doesn’t even exist.

We may want to blend in with the crowd and be “normal.” But no one really knows what “normal” is. To many people, “normal” might be healthy. “Normal” might be happy. “Normal” might be OK. But otherwise, I don’t think anyone really knows much about this “normal.” Would it have brown hair? Red? Black? Blonde? Natural? Dyed? Would it be tall or short?

I don’t think “normal” exists, and I don’t think anyone truly wants it to exist, either. I don’t want to be the same as everyone else. For me that’d be boring and awful and torture in so many ways.

So why do we pretend to be something that doesn’t exist and we don’t want to exist, other than “because everyone else is doing it?” There’s no good reason to justify pretending to be something that doesn’t even exist as we exhaust ourselves further.

So what if we were real?

What if we let down the mask and showed our true face? What if we allowed ourselves and each other to laugh and cry and leap and shake and dance and sob naturally? What if we didn’t judge our differences but accepted them and each other as we are? What if we embraced our challenges and triumphs and breakdowns and let them pull us together as one instead of shoving us apart?

If we were real, it would be beautiful. If we were real, we’d come together as one, sharing a common goal: to build each other up according to their needs. We’d never be alone, we’d have more energy, less stress, and more joy.

I don’t know about you, but in my opinion, that sounds pretty sweet. Less struggling and exhaustion and more energy and joy. Why wouldn’t we want that?

So let’s be real. Let’s make life beautiful.

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

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6 Pieces of Advice for Parents New to IEP Meetings

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As a resource specialist teacher, I speak in acronyms like IEP, DIS and LRE. To someone who is inexperienced in this world, I must sound like I am speaking some secret code language that only a select few know. That’s not what I mean to be. I actually mean to be a resource — really. I am usually the first stop when a child is diagnosed with a disability, and in meetings I mean to give parents the language and tools to support and advocate for their child’s education.

What many parents new to IEP meetings don’t know when they begin working with me
is that I was their child, too. My mother, like many of them, was a recent immigrant and not a native English speaker. She attended those meetings on my behalf and felt like a first-time parent despite having raised four children before me. Since beginning my career, I have listened to her stories about her dealing with my teachers and other professionals at these meetings to get her insight into the mind of a parent. I promised myself as I started this career I would not forget the parent perspective.

After 15 years of meetings, countless sheaves of paper and collaborating with a plethora of parents with one common thread — a love for their child and concerns for their future — I have developed a list of things I wish to communicate during these meetings:

1You can do this.

When your child was born, you may not have envisioned sitting in on these meetings. I’m sure any baby books you read didn’t include a chapter on the IEP process. But like with any new stage of your child’s life, you can figure it out. Trust yourself and cultivate people who have experience or who can support you in your decisions. Most of all, forgive yourself when you make a mistake and try again.

2. Ask, ask and then ask again.

There’s a fine line between deferring to the expertise of the IEP team and being a passive participant in these meetings. Whether you agree with the team or not, please ask questions. Ask for clarification, ask about your options, ask about the future or what you can do now. If we don’t have an answer, ask us who might. Just remember, periodically on your journey, there may be no answer — ask anyway.

3. Connect to community.

Whether you are a “joiner” or not, seek out community. This can take so many forms. The point is to cultivate support. Join an online support group or newsfeed for your child’s diagnosis. Subscribe to a professional organization’s website. If you can find an in the flesh support group — go. Talk to other parents at your child’s school or clinic with the same diagnosis and discuss their common issues and triumphs. Family, church, friends — anyone you can share freely with. Outside support will help you move along in this process.

4. Remind us that you know your child.

I will admit in our quest to “diagnose” and “treat” your child so that they can find success, we at times can forget to distinguish between the child and their diagnosis. Remind us that your child is a child — tell us what they like, what they do outside of school. Tell us even about their feelings and fears. We need to remember your child is in fact — a child first.

5. Think outside the box.

While the meeting ultimately results in a structured plan for your child’s education, to get there some brainstorming needs to happen. We know your child’s diagnosis is new to you — your child is new to us. From your perspective as a parent, make suggestions based on your child’s interests, predict their reactions, tell us what you can do and have access to. But also, what would you do if you could dream for your child? The best plans can be created from the most unexpected notions.

6. Ignore the negative — accentuate the positive.

Remember your child has both strengths and weaknesses — as does everyone. The nature of the IEP is to ultimately ameliorate the weaknesses and create strengths. Let us worry about the weaknesses. As a parent, concentrate on developing the strengths your child already has and give your child opportunities to show them off — to you and to us. Believe me time spent on that, will help us in creating the strengths your child needs to succeed in school.

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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When Your Child's 'Failure to Thrive' Diagnosis Makes You Feel Like a Failure

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My first baby wasn’t an easy baby.

He had colic and cried all the time. He had silent reflux and couldn’t be put down. He screamed in the car. He rarely slept.

And he wouldn’t gain weight. I nursed around the clock, but he just wouldn’t gain.

Caitlin Fitzpatrick Curley with her son.
Caitlin Fitzpatrick Curley and her son.

At first, our pediatrician would just note the drops in percentile. “He’s just finding his curve,” he’d reassure us.

But soon it became something more. It seemed our little guy was on a rapid descent down that growth chart. At birth, he was at the 75th percentile, but by 4 months, he was hovering near the bottom. Our pediatrician was empathetic but told us we would be referred to specialists if the pattern continued — just to be careful.

We tried even harder to get calories into our baby. I dragged a chair into our closet and nursed in the dark. I woke him up during the night to sneak in a dream feed or two. I arrived early to every weigh-in so I would have time to squeeze in one last-minute nursing session.

When it came time to weigh him, I felt a loss if his diaper was wet. As the nurse positioned him on the scale, I silently hoped he would gain and prayed with all my might that he wouldn’t lose.

The scale was never kind to us.

At our six-month visit, our pediatrician referred us to Massachusetts General Hospital for failure to thrive.

The words felt like a blow, and he must have read it in my face. He told me it was a terrible term.

He was right: It is.

I made it, just barely, to the car. My son and I cried together on the drive home.

How can one fail at feeding her child?

The appointments started right away. We met with the endocrinology, nutrition, gastrointestinal (GI) departments. We ruled out celiac, metabolic diseases, cystic fibrosis and cancer.

We were told to keep a food journal and record dirty diapers. We added high-caloric powder to his food. I discontinued breastfeeding, and he was put on various high-calorie formulas. We added oil and butter to everything.

Our lives revolved around calories in and calories out. I knew the calorie and fat content of everything. Every appointment loomed on our calendar. I felt suffocated. There was never enough time and never enough calories.

We drove into Boston monthly to meet with the nutrition and GI departments. My baby would cry all the way there, and we’d both cry on the drive home.

He just wouldn’t gain.

Our nutritionist would rifle through our food journal with a calculator in hand, tallying our calories as if they were points earned. We never had enough points, so she would repeat the same lecture from four weeks prior. She’d give me another helpful handout filled with strategies we had already tried a thousand times.

I wanted to take her back to our home. I wanted to see her to try to win at this game. I wanted her to feel what I was feeling.

I felt like a failure. I felt I was failing the one thing I had always assumed I’d be good at: motherhood.

We saw a renowned GI specialist who came highly recommended by many. He could never remember our names, rarely made eye contact and needed to be reminded of our care plan. And yet, he was a renowned pediatric GI specialist, and I needed him to help our son climb back on that growth chart. I felt I had no choice. I thought we were getting the best care.

Still, at every appointment I would ask him the same question: Could this be somehow related to silent reflux? Could he be in pain?

And every single time, he would tell me silent reflux doesn’t present this significantly. Things wouldn’t be this severe.

As our son grew, things got more complicated. To say that he was an active toddler would be a hilarious understatement. The child never stopped moving. He could climb walls and find his way out of any child proofing.

I would watch him run, climb, jump and tantrum, and all I could think was: How many calories is he burning right now?

I worried about the future. Would we ever get off of this dizzying spiral? Were we creating unhealthy and irreversible habits? Would he ever eat fruits and vegetables?

Eventually, when my son was a year and a half, the GI specialist ordered an endoscopy and abdominal ultrasound to determine the root of our continuing issues. It was an early morning and a long day. Watching a team of Boston’s finest put your baby under general anesthesia is no walk in the park.

We hoped we would have an answer soon and in three days we did. The GI specialist called to inform us that our son did, in fact, have silent reflux.

My gut had been correct all along. Our son wasn’t eating a lot because he was in pain. 

We were prescribed omeprazole to treat the reflux, and his weight gradually climbed until he was finally, blessedly, back on the growth chart.

On the day Massachusetts General Hospital released us from their care, we jumped for joy. We were free. Our failure to thrive years were among our family’s darkest days. It’s extremely challenging to put into words what it feels like to be informed that your child is not thriving.

Follow this journey on My Little Poppies.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? 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 Submit a Story page for more about our submission guidelines.

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Dear Special Needs Mom Who Feels Invisible

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mom holding sleeping son I want you to know that I see you.

I see you running your child to therapy when your friends are running their kids to Little League.

I see you slipping out the of conversation when your friends are all chiming in about milestones and test grades.

I see you constantly juggling appointments and meetings.

I see you sitting at your computer for hours researching what your child needs.

I see you cringe when people whine about what feels like petty things.

I see you spread thin but still going the extra mile for your family.

I see you digging for depths of strength you never dreamed you had.

I see you showing appreciation to the teachers, therapists and medical professionals who serve your child with you.

I see you rising early in the morning to do it all again after another chaotic night.

I see you when you’re hanging on to the end of your rope for dear life.

I know you feel invisible, like nobody notices any of it. But I want you to know I notice you. I see you relentlessly pushing onward. I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy and the doctor. What you’re doing matters. It’s worth it.

On those days when you wonder if you can do it another minute, I want you to know I see you. I want you to know you’re beautiful. I want you to know it’s worth it. I want you to know you aren’t alone. I want you to know love is what matters most, and you have that nailed.

And on those days when you have breakthroughs, those times when the hard work pays off and success is yours to cherish, I see you then too, and I am proud of you. Whichever day today is, you’re worthy, you’re good and I see you.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! 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 Submit a Story page for more about our submission guidelines.

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