A smiling mom and daughter laying down

I Didn’t Want My Daughter to See Me Sick. Her Reply Changed My Mind.

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She was 9 years old. And it was only one of the times she had noticed that something was wrong with me.

I was doubled over on the edge of my bed, wracked with tremors, pushing my terrors for the future away from myself. I had been told my neurological condition was progressive. I was living in fear of what was to come.

She came over to me and cradled my head in her arms, shushing me and stroking my hair. “It’s going to be okay… poor Momma,” she murmured. Her arms seemed so strong, yet so frail, wrapped around my head. An image of her tiny hand wrapped around my finger on the day she was born flashed across my mind. I thought about how unfair it was that she should be bringing me comfort. So young, she should be out in the yard doing cartwheels with her friends, selling lemonade or riding her bike. Not picking up on cues invisible to most and cradling her mother’s exhausted head in her arms.

I looked up at her, filled with the wonder of who she is as a person, her capacity to love, to make me feel like her words could be true. I looked at her as the tears filled my vision. And as I said “I’m so sorry, honey.” She shushed into my hair. “It’s okay Momma.”

Later, we talked some more about it. I explained that I wished it were different. I told her how much I wished she didn’t have to see me sick, or worry about me, or feel responsible for helping me. She reached for my hand. Mom, this is what families do. It’s called loving people,” she said, her quiet voice warm and sure.

This kind of insight is rare in a child. She’s extraordinary, my girl. And she’s right. The time comes in every family when we need to look after each other. It might be an elderly family member or a tiny baby, it might be a sick parent or a child with learning differences, it might be a broken heart or a lost dream. Caring for the diverse needs within a family isn’t the sole responsibility of a mother. It is a work of heart from everyone in the family. It’s what families do. Making sense of the challenges we face and delivering the love and care we need. It’s what makes families work.

I have often raged against my diagnosis. Felt like it is a cruel punishment meted out to us alone, among the throngs of well people smiling out from the glossy pages of normal life. Why is it my husband and children that need to suffer through this? Isn’t it enough that I do? Why must it throw their lives into a different trajectory, too? But lately, I’ve been seeing it more often in the light I see shining through situations like that one. I’ve been thinking about her words.

As I watch her grow, I have often thought twice about the hand fate dealt us. She has such a beautiful heart, my girl. Strong and sensitive, sweet and soulful. She may have developed these aspects to her nature entirely independent of our situation, but when I contemplate all the challenges we have faced as a family, I know that her life experiences have contributed to the beauty of her soul. Hardship, unpalatable as it is, helps us to grow. I see that she is advanced in the knowledge of all that matters in life. Her priorities are good. Her heart is kind. There won’t be much that she will face as an adult that she won’t already have resources for. She’s set.

It’s true that my diagnosis has brought much suffering. Yet that suffering has brought a perspective that helps each one of us to appreciate the beauty of life so much more. I didn’t choose to get sick. She didn’t choose to have a sick Mom.

But this life; this is the one we got. And it has given us a chance that many others don’t seem to have. Through all of the moments of need and response, we have learned we can rely on each other. We can rest in each other’s arms. We get it. For every difficulty, there is a flip side benefit. For every compromise, respite. Some of those benefits will be more evident in the long-term. But some, like the strength of connection between us as her arms wrap around my head, are for right now.

It’s nothing to do with sickness or even wellness. It’s nothing to do with how it should be. It’s nothing to do with being a failure as a Mom or over-burdened as a kid. It has everything to do with reality. This is life. And as she put it: it’s called loving people.

I’m grateful to have this wonderful person in my life. I’m grateful for the lessons in love that I get to learn every day. And yes, I am grateful for the space created for that learning by my diagnosis. There are many ways to grow as a person, just as there are many ways shut it down. If there must be sickness, then we are not going to waste any of it ignoring what it has to teach us. It’s just what families do.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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5 Things You Should Never Say to a Chronically Ill Parent

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Wouldn’t it be nice if we could just write a letter to the world, expressing everything we’re too polite to say, and that could just be the end of all our awkward encounters? Well, a gal can dream, right? Yet things aren’t usually so simple in real life. Actually, things tend to get quite messy when you’re a parent with a chronic illness (or two, if you’re like me).

We chronically ill folks have years of experience dealing with unknowingly rude comments. But something changes when you become a parent. All of a sudden, the harmless jokes and insensitive remarks hit us harder and deeper because we are already painfully aware of our limitations and what we can and can’t do with our children.

So to all the well-meaning friends and family, here’s a list of the top five things you should probably not say to a parent with a chronic illness:

1. “But you look fine!”

Unless you want to receive a death stare that could burn a hold through even the thickest slab of marble, keep this one to yourself. While you may mean this as a compliment, saying that they look good, it actually invalidates them. You’re basically implying that because they don’t physically look sick that they must be fine. For most people with a chronic illness, this is usually far from the truth.

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How I feel when you tell me I don’t look sick.

2. “It could be worse.”

Sure it could be worse. A meteor could crash through the roof while we’re talking. Wait, no, maybe that’s a good thing. Regardless of how you “meant it,” this one again comes off as rude and minimizes the chronically ill person’s situation. A good rule of thumb is to put yourself in their shoes. If you just told someone about a bad or difficult experience and that person responded with, “It could be worse,” wouldn’t you feel hurt by that?

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It could be worse; I could be on Wipeout.

3. “Do you ever regret/wish…?”

Sadly this is something that has been said to me more times than I can count – which is crazy when you consider that one time is too many. Even if you genuinely think that not having a child would make things easier for this person, don’t say it. Sure, if I’m being embarrassingly honest, there are times when I daydream that I’m on an island somewhere, relaxing pain-free, with an unlimited lives on Candy Crush. But I don’t for a second wish I wasn’t a parent. Although not being vaguely sticky 24/7 would be nice.

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These are real questions, people.

4. “Have you tried…?”

Yes. Whatever it is you’re about to name, yes. We’ve tried it and a hundred other things and nothing has worked. Whether it’s trying to find an easier way to be physically active with our kids or endless amounts of Google searches for cures to whatever ails us, chances are we’ve been there and done that. While you may be trying to help us brainstorm the perfect solution, here’s a little something that may blow your mind: even healthy, average parents with healthy, average children run into challenges with no clear, easy solution.

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Even the best parents have cake-related injuries.

5. “What can I do to help?”

Actually, just kidding, this would be amazing! You may think we’re invincible superheroes who can do it all, but that’s just a front we put on because if we didn’t we might not want to get out of bed. So even if you think that offering help could be demeaning or intrusive, please do it anyway. And to all the people out there who can see through our hard exteriors, thank you. Thank you for listening and thank you for supporting us.

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This post originally appeared on Bump Birth and Beyond.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. 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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What Hollywood Gets Right About Teens With Chronic Illness

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I belong to a community I never wanted to, but that has changed my life in ways I cannot even express.

I am part of the group of young adults and teenagers who have chronic illnesses, and are fighting these diseases constantly. Unfortunately, as with any situation, it’s difficult to understand what someone is going through if you haven’t gone through it.

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I met my best friend through my illness. I have also met so many other fabulous people who have helped me through this journey. I read “The Fault in Our Stars” by John Green before and after I got sick, and empathized greatly with the main character, Hazel. I watched the movie when it came out in the theater with my best friend.

Similarly, I was ecstatic when I discovered that there would be a TV show (“Red Band Society“) about teenagers in the hospital. I was in the hospital when it came out, and I watched the episodes beneath the glow of my IV pole.

However, not everyone in the chronic illness world shared my views. Many chronically ill teens and young people were upset by the glorification of illness, and how it forms a very untrue portrait of chronic and critical illness in the public eye. And I agree — the TFIOS movie and “Red Band” show are both inaccurate.

The characters in the “Red Band Society” make the hospital look like a party, complete with beer, rooftop fires, and romance. I’ve spent over five months in the hospital over the past year, and I can tell you I’ve never seen a rooftop fire nor fallen in love. “The Fault in Our Stars,” especially the movie, makes terminal cancer look like a literal walk in the park, with dream vacations and an epic love story.

Yes, there is a lot of inaccuracy and drama in these fictional stories about illness. But what are we supposed to expect? This is fiction. This is Hollywood. Everything is dramatized to look much larger than life. There are very few movies and TV shows I have seen that aren’t glorified. I hate to say it but it’s true: it’s hard to sell a story that stars real life.

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But what is the alternative to having these stories be blown up larger than life for the big screen? Not showing them? Keeping everyone who doesn’t have a link to these diseases in the dark?

So many people have no idea that young people can get sick. Teenagers are supposed to be at the pinnacle of health, the topmost point of physical excellence. Even doctors sometimes seem to have difficulty believing that I, a 16-year-old, am totally dependent on a feeding tube for survival.

Yet I am not alone in my situation. Movies and shows like “The Fault in Our Stars” and “Red Band Society” spread awareness. They show people that there are teenagers who are not healthy. They show that there are diseases that modern medicine cannot fix — and we need awareness to find solutions.

This post originally appeared on “Her Breath Is Made of Starlight.”

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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A Letter to the Illness I Thought I Was Too Young and Healthy to Get

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Dear illness,

I never knew you would come for me.

We all know about illness. It’s the elephant in the room. Yet somehow we always assume it will happen to someone else. The trouble is, we’re all “someone else” to the rest of the world.

When I joined the ranks of those forced to shoulder you, I realized I shouldn’t depend on this life happening to others.

You came at an unfortunate time. I was at the cusp of life. I was supposed to be healthy and free. No one imagines someone this young getting sick.

You aren’t fair.

You aren’t right.

But you’re what happened.

My life today is different from my peers, but that’s OK. I’ve learned to savor the moments where I can breathe without pain. I walk when I can, and when I can’t, that’s OK too. You’ve taught me that sometimes crying is the only way to heal.

You took so much that I’d give a lot to get back. You took my love of sports, my ability to eat, some days even my ability to move. You’ve taken so much more, and I hate you for that. But because of this, I’m grateful for the little things. In a few years, those are the things I want to remember. How, despite you, I found hope, happiness and joy. I’ve learned to find the silver lining even when it never seemed to stop raining.

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You’ve shown me how fast life changes.

You’ve shown me how to live. Sometimes you should take the hurt later if it means you get to walk on the beach. When you’re living seconds at a time because of how much it hurts, remember that you will make it out to the other side. Life isn’t measured in years, and months, or even days; it’s measured in heartbeats, and kisses, and prayers.

So illness? Thank you. Because of you I know what it is to be brave.

Sincerely,

Savannah

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Hey, You With An Invisible Illness: Stop Being Superwoman and Speak Up

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If you have an invisible illness, I feel you. Here’s your homework: Be a squeakier wheel.

And to the rest of you, you probably have one of these women in your life. Listen along.

Superwoman: I know you have a high tolerance for pain; I know you can do it all, and I know you even “look good” doing it. This fools everyone, and you may not be getting the best care as a result. Maybe you’re already diagnosed, maybe not.

My mother endured Multiple Sclerosis (MS) symptoms for decades without diagnosis. Aside from an outdated MRI machine that didn’t detect lesions, appointments went like this:

  • It’s menopause.
  • It’s carpal tunnel.
  • You look good. (Her students would call her Wonder Woman after all. Uncanny resemblance.)
  • You have a neuroma in your foot.

Hey, doctor: A woman who’s had natural childbirth knows pain. When she tells you her “tingling” feels like she slapped her hands hard, it’s not from working on a computer. When she tells you it hurts to walk because it feels like her feet are bound up and shoved into tiny shoes, she doesn’t need better shoes — or surgery for a “foot problem.” I get it, people get unnecessary tests. But please, doctor, know when to take a closer look.

Back to you, Superwoman. This isn’t an alarmist post to run to the doctor. It’s about chronic symptoms. It’s the gut feeling you have that this isn’t right, even though you can keep your world going. Trust yourself. And when you finally admit you need to speak up, don’t hold back for selfless reasons. When things got bad for my mom, she waited until after her children left home to get the diagnosis she knew was coming (either a brain tumor or MS). 

There’s a mix of denial and optimism that things will get better if we keep on quietly trucking. My mom will keep hobbling about town with her classy lucite canes, and neurologists will look at her and say, “Well, you’re still walking!” Yes, she’s walking, but it hurts. And she feels she may reach a point where she cannot.

Here’s the thing. She’s started speaking up and isn’t getting anywhere.

I sat with her in an appointment where she came out and said she didn’t believe the doctor was giving the same quality of care he’d give his wife. Taken aback, the doctor assured her he is and sent her home with nothing new.

So maybe you’re not speaking up because you feel you’re out of options. Keep talking anyway! Even if it comes out “bitchy.” Suggesting treatments you’ve read about isn’t disrespecting medical professionals. At the end of the day, we all have the same goal to get better, right? If we keep talking, we’ll connect with people who can help in ways we never imagined. We already are here.

Superwoman, it’s your time to fly. Let’s talk about you. One, two, three… Go.

Note: I directed this toward ladies because I am one and felt most comfortable generalizing to that gender… though each of us is clearly unique.

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To the Momma of a Chronically and Critically Ill Child

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Processed with VSCOcam with f2 preset I’ve seen you in those hospital rooms. I’ve seen you hand your child off to surgeons, not knowing if you’ll ever get to hold them again with a beating heart. I’ve seen you pray, hope and hold on to faith with a sheer will that would put most to shame. I’ve seen you hold your baby with tears streaming down your face because this kind of sickness isn’t the kind that just comes and goes. This is the kind where no one can assure you that your child is going to be OK.

You are brave. You are strong. You are loving.

You fight for your children when they can’t fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry in the stall where they can’t see. You research and talk to doctors and talk to other parents to find the best possible treatment plans and solutions to give the best life to your child. You take part in care for your child in ways even some in the medical field are intimidated by, dropping NG tubes, changing trachs, giving IV meds through a Broviac at home.

You go to the places no one wants to go. You know a side of the world that most would like to pretend doesn’t exist. You call your children’s hospital your home away from home, and while the rest of the world may find that sad, you see the hope. It’s the place that gives your child a chance at life.

I see you, Momma. And you are loving that child unconditionally, just as you should. You are standing beside them come hell or high water, and you are doing a good job. You are giving them the best.

You are their cheerleader. You are their smile maker. You are the one that knows their favorite songs and favorite toys. You are the one that knows how to calm them down, how to hold them, how to love them best.

While other parents know everything about their child’s sleep habits, you know everything about your child’s vitals — where their normal sats levels should be, what their resting heart rate is, their normal pressures. While other parents can talk about their kid’s feeding schedules, you could talk all day about your kid’s anatomy, what surgeries are next or what treatments are on the radar. While other parents are teaching their kids to crawl and to walk, you are teaching yours to drink from a bottle just to get rid of that dang NG, you are teaching them to bear weight on their legs and rebuild their core from weakness of lying in a hospital bed all day. While other parents look forward to going out on a date night without kids, you look forward to the moments when you can grab enough hands to shuffle around a bunch of machines and a hospital crib to just hold your baby.

Processed with VSCOcam with f2 preset You are brave. You are strong. You are doing a good job.

You are a mom. You would do anything for your child. And some of you have to brave the path that no parent should have go down. Instead of debating the best way to introduce solid foods to a baby, you are making decisions with doctors on quality of life for your child. Instead of choosing diaper methods, you are choosing between cremation and burial. Instead of planning a first birthday party and stressing over the details to make it perfect, you are planning a funeral. You are a mom. You would do anything for your baby, even when it means they are in Heaven and free and you are the one left here to suffer.

To those of you, I see you. Hold on to hope.

This is not a path anyone chooses. You did not do anything wrong to make this happen. Your child did not do anything wrong to make this happen. This does not make you worse or better than any other parent. It just makes you different. You love your child the same, you just experience things differently than the “normal.”

Keep on doing what you are doing, loving that kid no matter what.

You are doing a good job.

You are a good mom.

Love,

A Momma Who Knows

This post originally appeared on Scribbles & Crumbs.

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