When My Son Asked ‘Why Me, Mommy?’ When He Was in Pain

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Surrounded by medical staff, wired up to oxygen and in terrible pain, my sweet 6-year-old son looked up at me with his innocent blue eyes and asked, “Why me, Mommy?”

I wasn’t the one in pain, but it broke my heart.

I knew this question would come, but when it did I simply wasn’t prepared.

As someone put it so eloquently, developmental dysplasia of the hip (DDH) isn’t life-threatening  but boy, is it life-changing.

My beautiful boy wanted to know why he had DDH.

Why he hurt.

Why he had to come to the hospital, again.

Why he needed to have pre-medication that made him feel like he was upside-down.

Why he was not allowed to have breakfast that day, not even a piece of toast.

Why he had to be pushed across the hospital corridors and down to the cold surgical ward.

Why a man put a needle into his hand and made him cry.

Why the man needed to pump “magic” juice into his arm that made him go to sleep.

Why his mommy had to leave him for hours.

Why his surgeon had to break his pelvis and shave his bones.

Why he had to wake up in the recovery room, where he was surrounded by strangers and machines as Mommy held his hand.

Why he had to listen to other children crying.

Why we couldn’t go back to the ward and find Daddy for two hours because his oxygen levels were low.

Why his wound was bleeding and Mommy was worried he had an infection and would need emergency surgery.

Why he felt too poorly to drink his tea.

Why the nurses had to wake him in the night to turn him over, which hurt all over again.

Why he couldn’t see his brother Eddie.

Why he wouldn’t be able to walk for two months, maybe more.

Why he would have to use a wheelchair.

Why people would stare.

Why he had to have a chronic condition.

The answer is, I didn’t know why him.

He has DDH, and no one really knows why.

It may have something to do with genetics, maybe something to do with chance.

I couldn’t say. I could tell him, however, how brave he was.

That I wish I had DDH, not him.

How much we love him.

How Mommy and Daddy and Eddie are always here to help him.

That everyone was sending him messages of love.

That he was the reason I wrote my book, and so many other parents would be able to learn about DDH and how to help their kids.

That he was the reason we’ve raised over $1,000 to help other kids and their families.

That we will help him get better.

That he will run again and play football.

That he can have lots of “duvet days” with Mommy at home.

That sometimes life can be tough, but that he is a fighter.

That he is the bravest person I know.

That I love him so much.

That his Daddy and brother think he is a superhero.

“But why me, Mommy?” he asked again.

Follow this journey on Just Because I Love.

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.

Lead photo source: Thinkstock Images

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What I Want to Say to the ‘Healthy World’ About My Chronic Illness

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Surprise! I actually don’t hate you. In fact, I love you. I don’t envy you. Yes, of course I wish I were in your shoes  but then again, the grass is always greener on the other side of the fence. I know you don’t understand my situation, and I know this can feel as hopeless for you as it does for me. But please understand some things.

Dear “Healthy World”: This is what I want you to know but never tell you.

Please don’t laugh.

My illness is hard and I know you don’t understand, but I don’t find it amusing that at 16 years old I don’t know my multiplication facts while my friends are in trigonometry. I don’t find it funny that I’m having a tic that looks like I’m clapping. I know you mean well and are trying to make light of a situation that you do not understand, but please don’t.

Please ask questions.

Don’t be afraid of me. I don’t bite. I know that you asking questions means that you care enough to want to understand my illness, and that means a lot to me. Don’t be afraid to ask about the bandage on my cheek with a yellow tube sticking out, or the hospital mask at church, or the noise I’m making, or the tie-dye IV sleeve on my arm in the summertime. If I don’t want to talk about it, I’ll tell you. But most of the time, I don’t mind answering questions.

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Christa and a friend.

Please be there.

Buy those flowers. Send that text to check on me. Don’t be afraid to call me. Maybe I’m resting, but my phone has “Do Not Disturb” for a reason. If I’m not up for talking, I won’t answer. But it will mean a lot to me that you tried. Don’t be afraid to try to arrange a time to meet. Please, please still invite me places. How I long for the days when I was one of you and my weekends were filled with partying instead of catching up on overdue homework and emergency room trips. I know sometimes it can be hard for you because I can never give a definitive answer. For that, I am truly sorry. But please know I am trying my best and I do want to come, and the fact that you thought of me will make my day.

Please don’t stare.

I do notice. I do have feelings. I am still a person just like you. I still feel pain. Please don’t stare at things that stand out. I know it can be hard not to stare at things you don’t understand, but please try. Again, ask those questions. Maybe it won’t seem so foreign if you ask and try to understand what is going on inside of me.

I don’t want your miracle cure… 

…that worked perfectly for your cousin’s neighbor’s dog’s sister’s father’s grandmother’s friend’s neighbor’s aunt. I want a friend. I want a shoulder to cry on when I feel like the sky is falling and the weight of the whole world is on my chest. I want someone who will be there. I want someone who will ask if I’m up for a visit when I’m sitting in the hospital unable to speak. I know I’m not always the easiest company, but please try to be patient with me. If you remember how I was before I got sick, please remember that I’m still in there and I want nothing more than to go back to how life was for me then.

I know I can be hard to deal with sometimes. Thank you for trying. I love you.

Sincerely,

A chronically ill teen

two teenage girls smiling
Christa (left) and a friend.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. 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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When I Realized I’d Become an Ungrateful Special Needs Parent

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As the mother of two children with special needs, it is hard to admit that I have been ungrateful but I have. When I started this journey, I was grateful for every moment — every single snuggle, every medical intervention I needed to learn in order to provide my children with the best care possible. When I started this journey, I was shiny and new, ready to take on each day and find the beauty it had to offer. Yet as the days turned into weeks turned into months turned into years, I have become jaded and ungrateful, worn down by the obstacles we must overcome. Rather than enjoying the moments of parenthood, I have chosen to live in the not-so-shiny happenings of the day-to-day. Where I once found joy and strength, I find anxiety and anger. Somehow I have lost sight of what truly matters in my world, replacing my optimism with doubt and dread each passing day, taking for granted the life I have been given with my two miracle children.

boy and girl lying on couches
Maria’s children, Michael and Maiya.

It dawned on me this morning, with one toddler pulling on my pajama pant leg and the other calling “Mom, Mom, Mom” from his crib. I made my way to my son’s bedroom. Opening his door, I saw him standing in his crib, pants-less, his gastrostomy-jejunostomy tube opened at the port, dripping formula everywhere. His face lit up when he saw me, and his calls for Mom turned into excited squeals of affection. Yet I wasn’t happy to see him; I was annoyed at the mess he made, the extra time it was going to take me to clean him up. As I scooped him from his bed, I realized just how ungrateful I had become. It was in this moment, clutching my son to my chest, his formula soaking my shirt, that I cried for who I had become and the moments I have selfishly let slip away.

I have become so easily distracted by to-do lists and medical interventions that I have taken for granted the toddlers I have the privilege to watch grow. I have been so focused on the daily setbacks that I have taken for granted the small victories in each day, the milestones we have met and the happiness my children spread to the world around them — but not today.

Today, I won’t take for granted the piercing beeps of my sons feeding pump at 2 a.m. I will be thankful that it alerts me when he is out of his allergen-free, nutritionally-complete formula. I will be thankful that it provides the nourishment necessary for him to thrive and develop, keeping us from running total parenteral nutrition (TPN) through the catheter in his chest.

Today, I won’t take for granted the bickering between my 2- and 3-year-olds. As mind-boggling as their arguments might be (who fights over the pink and purple hair clips that neither one is wearing?), I will relish in their developing personalities and the opinions they are learning to express.

Today, I won’t take for granted my daughter’s need for autonomy and independence, even if it means it takes her an extra 15 minutes to get dressed. Could I do it for her, quickly and efficiently? Sure. But I won’t. Not today. Instead, I will wait patiently for her to problem-solve her way through putting socks and shoes on the correct feet, praising her efforts and her success.

Today, I won’t take for granted my son’s repetition of the few words he knows. After months’ of worrying that he would remain nonverbal, I will take notice of what he does say, hanging on his every word, even if there are only 12.

Today, I won’t take for granted the small victories, like finishing the load of laundry in one wash and dry cycle, or having 10 minutes to write before naptime ends. Instead, I will be thankful there was a naptime and that I accomplished something. I will find happiness in the clean shirt that has found its way back into the closet without having to be returned to the dryer to remove the wrinkles.

Today, I won’t take for granted the husband who let me sleep in until 10 a.m., getting up with the kids at 7 and handling the morning routine with a smile on his face. Instead, I will be thankful for him, realizing that not every woman is as lucky as I to have a partner in this emotionally and physically demanding life. I may not thank him outright, though maybe I should, but I will store this moment inside my heart with the thousands of other reasons I love him unconditionally and always.

Today, I won’t take for granted the messy living room, covered in toys and books and puzzles. I will relish the clutter, knowing that my children are engaged, learning and imagining through play. And then I will join them amongst the light-up fire truck and police car, the tiaras and gowns — because everyone should stop and play dress-up policewoman princess from time to time.

Today, I won’t take for granted the seconds I have with my children, the moments that I almost lost three years ago to sepsis, or three months ago to malnourishment. Instead, I will be present in each and every moment, finding happiness in the time I have with my children. I will hold them for as long as they allow, releasing them into the world with pride as they take their futures head on and with confidence.

Today, I will be grateful. I will live in this place of uncertainty, finding happiness in the little family I have created with a smile on my face and gratitude in my heart. And if there ever comes a day when I find myself taking for granted the gifts I have been given, I will find this, reread it, and search for new reasons to be thankful for the husband who
chose me and the life we have built around two of the most beautiful miracles on earth.

boy and girl on couch

The Mighty is asking the following: Write a letter to a stranger or someone you don’t know well who showed you incredible love recently. 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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To the Mom Trying to Accept That Your Baby Will Be Tube-Fed Instead of Breast-Fed

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Fed is best, although it sometimes takes a long time for a mom to accept this. Because it might feel natural to breastfeed and you want to breastfeed, but then when that doesn’t work and you’ve cried over it countless times, you accept that bottle feeding may be the way. You’ve got to go to help your kid grow. Then when that doesn’t work and you’ve gone through the same process of grief and despair, you accept that perhaps having a tube is the way your baby needs to get nutrition to grow big and strong. Not many people end up at this stage, though it can feel like a huge part of hospital life.

But when you do get to this stage, and you’ve been through the previous two, for some reason you keep going back to them. There’s something inside you that says you’re “lazy” and “haven’t tried hard enough.”

Sometimes you need an external voice of reason. To say, stop. Is he growing? Is he developing? Is he happy otherwise?

Yes.

Then at the moment, that’s all that is important.

Let them smile, play and reach for things, and roll, and start to giggle. Let them grow, grow, grow. And with growth comes strength, and with strength comes learning, and with learning comes feeding. Hopefully.

And I guess in the grand scheme of things, hope is all we can do.

We may grieve for the feeding we missed out on, feeling like it’s at the core of motherhood. So cry about it, moms, with chocolate beside you. Then go and turn the pump on and get that kid up a centile.

Breast-fed, bottle-fed, tube-fed? Fed.

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This Teen Turned Her Medical Brace Into Fantastical Costume Armor

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One teen transformed her medical back brace into an awesome piece of fantasy armor.

Maddie Cable, 17, from Charlotte, North Carolina, was in a car accident with her mother, Linda, in late November, BuzzFeed reported. Their car hydroplaned and in the crash Maddie fractured to her T12 vertebra. Doctors stabilized it with rods and pins and Maddie was told to wear the brace for at least six weeks.

 

Cable and her friend Sarah Chacko, 19, are both big fans of the sci-fi/retro style called Steampunk. Chacko had steampunked other things in the past, so she and Cable got together and spent about five hours transforming the medical back brace into what looks like an impressive metal armor corset, The Huffington Post reported.

Using metallic spray paint, metal framing trim, gear-shaped stencils and acrylic paint, they created something pretty cool.

 

At first, I felt very self-conscious about the brace,” Cable told BuzzFeed. “But then Sarah brought up the idea of steampunking it, which I loved… I enjoy wearing it now. It makes me feel more confident.”

 

People are initiating conversation instead of just staring,” Cable’s mom, Linda, told HuffPost. “She feels like they see her, and not just her injury.”

Cable and Chacko have a friend who is having knee surgery soon, so the teens say there may be another Steampunk project on the horizon, BuzzFeed reporter.

h/t EpBot

 

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The Truth About My Child’s Meltdowns

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There’s a secret world within the world of parenting a child with special needs, a world only some of us parents are privy to.

It’s difficult to write about.

His face turned red. He screamed, his body tensed. He quickly lifted his leg, dropping it on my leg over and over.

I don’t leave his side. I rarely do. He bites, head butts, pinches and punches.

I am afraid. That’s the truth.

I am afraid to leave his side in case he hurts himself.

I’m afraid he will hurt his brothers.

I’m afraid his brothers will learn to fear him.

I’m afraid he will not regulate this time.

I’m afraid he thinks I fear him.

I’m afraid that one day I won’t be able to help regulate him.

I’m afraid his medication needs to be increased.

I’m afraid he is hurting and Mommy can’t help.

I’m afraid he is trying to tell me something, but I can’t hear him.

I’m afraid his brothers think that he is hurting Mommy on purpose.

I’m afraid he thinks I don’t love him, while I try to hold his arms down and rock him.

I’m afraid he is afraid — imagine being afraid and not even able to tell your Mommy?

This is a reality for me and many other parents like me.

We don’t speak about this because we fear the public will think badly of our children or think we are full of self-pity. I’ve met plenty of members of the public who have told me (after my son has had a meltdown in public), “I wouldn’t let him get away with that behavior.”

Sadly many of us have feelings of shame, shame of what others will think.

My son cannot help his actions and reactions; they can be triggered so quickly and can subside just as quickly.

Behavioral therapy for children like my son can be beneficial, but as the years pass by, my son has lost some of his cognitive ability, making it difficult to engage him.

Art and music therapy are also beneficial, as is animal therapy. Medication has helped.

Medication is a scary option. There are so many questions we must ask before we even think about medication — especially considering my son’s progressive condition.

Medications, dosages and getting everything “right” takes time and patience, for my son as well as us.

But if you’re lucky enough, you will find the right balance, not only for your child but for your whole family.

My son still has meltdowns. I am still afraid of everything I listed above, but — and it is a big “but” — these meltdowns aren’t as often nor are they as intense as they once were.

To those who’ve experienced this part of parenting children with extra needs, I know it is heartbreakingly hard and scary, but there is help out there for your beautiful child and for you.

You and your children are not alone. We are here. We are quiet — but we are here.

little boy holding a toy

A version of this post originally appeared on Firefly Friends. Follow this journey on It’s Me Ethan!

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