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My Whole Family Has the Same Illness, and My Husband Cares for Us All

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I’d heard through the years that when you met the right person to marry, you’d just know. That finally proved true for me in 1999, when I met the man who would become my husband, Chad. Engaged within four months, it had not taken me long to realize that not only would he be an incredible spouse to me, but he’d also make an extraordinary father to the children we had already started to name on days spent at the park dreaming about our future.

The road to parenthood wasn’t easy for us. Unbeknownst to us, we both had an underlying mitochondrial disease. Yes, you read that right.

Both of us.

It seemed as soon as I would solve one medical issue, my body found another. After we finally got pregnant with our first son, I heard people talk about how husbands slept all night, leaving the wives sleep-deprived. That didn’t prove true for me. Chad would change diapers before handing our children to me to nurse. We also bottle-fed so he could give me more rest time.

 

During the first six years of their lives Chad was the primary source of income. By 2010, we had all received the diagnosis of mitochondrial disease. In 2012, I began writing to try to supplement our income. It also provided an escape from the harsh reality that had become our life. Unfortunately, my body couldn’t keep up with the energy demand. I was constantly sick trying to be a full-time mother and writer. That’s when Chad stepped in and did what many men wouldn’t: he became Mr. Mom.

Chad let me sleep in every morning, always the one to get up with the kids and administer the many medications they take on a daily basis. He had a very strict routine he spent months developing, one he knew would work best for our children to allow them to thrive. While I know our children’s medical histories like the back of my hand, he brought a different perspective and angle to how best to care for them.

Medications are administered over six times throughout the day. Feeding bags are refilled, discontinued and started again, as both boys now have tubes. CPAP tanks are emptied and then filled again. Syringes must be washed so they are ready for preparation of the next day’s medications. Bath time and bed time routine consists of bed pads and pull-ups, making sure the oxygen concentrator tubing has been laid carefully through the hall so no one trips and connected to Noah’s machine. And last, but not least, he is a barber and the nail clipper. He is the disciplinarian when needed, and the fun father that plays games with his kids as his hobby.

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Over the last couple of years, we realized I would always get sick if I spent the night when the kids are in the hospital, so our procedure changed. I would go with the sick child to get them started, telling the nurses the medical history, and then Chad would come to relieve me, handling the rest.

The main symptoms of his mitochondrial disease are severe fatigue and myalgia. So, while doing all of these things selflessly to make sure his family does not fall apart, he often wears an ice pack on his upper or lower back. Cutting the grass requires liters of Gatorade and many rest breaks. If there is too long between meals, he has been known to black out. Fasting is a definite no no, but he’ll feed us before he eats every single time.

He rarely complains, and when asked if he’d rather work, go out with friends or take care of his family, I am 100 percent sure he’d say be with his family. There is nothing Chad wouldn’t do for his children or his family, despite his own limitations. He is the epitome of the word father.  I’ve heard people say that if something seems too good to be true, then it probably is. My husband, the father of my children, proves otherwise.

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Thinkstock photo via syntika.

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Why I'm Telling You About My Medically Complex Children

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Right now, my boys are sitting at our hand-me-down dining room table playing on computers that educate them during the school year as online students.
They are building and designing games on Roblox Studio. Together, they’ve created a group where they assign tasks to members. They pay people to do jobs they haven’t yet learned to do themselves with the Robux they save each month from their games.

They apply rules to their group, moderate the members, and set training sessions to teach those members how to contribute to their little world.
My boys are happy, well adjusted, and thriving despite their life-threatening diagnoses. They are very much like your children despite the feeding tubes currently infusing hydration into their bellies, the CPAPs they use to breathe when they sleep, the oxygen that supplements the air they inhale, the wheelchairs they use to navigate long distances or times when they are required to stand for extended periods, despite many medications that help their bodies perform basic tasks like digesting their food, and despite the immunoglublins that cost thousands of dollars a month that provide an immune system so they can actually go in public without getting sick.

Why am I telling you this?

When I had my oldest, Noah, I thought my life would be filled with play dates, birthday parties, seeing my child in the hall at the school he attended and I taught at. I imagined vacations to the beach in the summer, the mountains in the fall, and watching my husband coach his Little League games with weekends spent watching Tennessee football on top of ‘ol Rocky Top as a house divided (Go Gamecocks!)

I never imagined I’d become so skilled I’d be teaching nurses strategies on how to tape GJ-tubes to prevent them from being pulled out or telling doctors which gauze causes the least amount of granulation tissue around a stoma. I didn’t even know what a stoma was. I dropped biology in college in favor of plant science. It was the last class I took before I student taught, and I took it a semester all by itself after I’d had Noah so I could have more time at home with him before jumping into my career. I remember talking to my professor about how sick he was, and him comforting me that he’d be OK.

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Why am I telling you this?

Twelve years into being a mother, I have learned to fight like I’ve never fought before — and also learned way more biology than I ever imagined. See, when everything is so out of control — when you lose the ability to tell your child they will be OK, when they ask you if they’re going to die from their disease and you don’t want to lie, but you don’t want to tell the truth — you learn to fight for cures, and awareness, and a way to distract them. When they can’t play Little League and have to see life and Rocky Top from afar, when you have to tell them no Tennessee football games because of their health, you find new dreams to replace the old. You fight to make all the wishes come true.

You especially learn to fight when you have go neck and neck with doctors who think they know your child better than you.

Doctor: Well, he looks great to me.

Me: Smiles and nods while thinking, “But you just met him.”

Fighting is taken to a whole new level when the people who should be on your side, who should value your opinion and trust you can’t get past their ego, and you can’t fight them because they hold all the power over whether you take your child home. Knuckles get bruised when you attempt to educate a school about your child’s disease, but they’re unwilling to learn — when they refuse to provide even basic services, like making sure they don’t accidentally kill your child while he’s there for a few hours.

You develop this hard shell of an exterior like a turtle. You learn that slow and steady wins the race, but you wish you were a rabbit because you’re tired and wonder what it’d be like to have a little extra energy. You know if you poke your head out too far, you could get hurt. Sometimes it’s just easier to stay inside where it’s safe, where no one judges your speed, your fights, your advocacy, your children, their disabilities, your parenting. Should I post this to Facebook or write it in a journal? Will they judge this?

Why am I telling you this?

Because despite all of these things, my kids are sitting next to me on computers thriving. Do you know why? Because the state of Georgia and the federal government recognized this is the best place they could possibly be — with people who love them, in a home they call their own, doing all the things they are able to do — not focusing on the things they can’t. They recognized that doing this is cost effective for the state and federal government. But more than that, they recognized that my children are worthy of a life — of breathing air, digesting food, playing games, laughing, learning, and loving others.

We are barely able to stay afloat. There are so many costs Medicaid doesn’t cover monthly that we gladly foot the bill for because we love our children, and there’s nothing we wouldn’t do for them. But without Medicaid, there’s nothing we will be able to do for them because we wouldn’t be able to afford it.

My children meet institutionalized level of care. That means if we can’t care for them at home, their needs are extensive enough that they’d need to be in a nursing facility. Even with our care, the state just approved them both for 40 hours each of home health nursing in addition to what we provide. That is their level of their care. Not a personal care assistant. Not a CNA. The state of Georgia has approved an RN to be in our home for 80 hours a week in order for them to get the care they need while continuing to thrive, to live as full of a life as possible.

So I just want to say that I hope when people think about where they want their tax dollars to go (or in this case not go), they think about my children playing on their computers, beating odds, and thriving while doing so. It’s because of Medicaid that that’s the case.

Don’t be fooled into thinking the AHCA gives the states more freedom. It doesn’t. It’s basic math. Less money = less services. The first to be cut will be the ones who need it the most. The people who abuse the system will always abuse it. The people who use it honestly will always be honest. We are the ones that will suffer. My children’s lives aren’t a line item on a budget. They’re not a negotiating point. Don’t tell me this is about government conservatism. The only things I’m interested in conserving are their lives, their ability to sit at my hand-me-down dining room table wiggling in my chairs while playing their games.

The only worry I should have right now is whether they’re going to break those chairs, not whether our country is going to break us.

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As a Mother With Mitochondrial Disease, My Presence Matters

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Mother’s Day provokes odd emotions in me ever since my first husband died of a brain tumor when I was 27. Some years, I celebrate simple survival, parenting two young boys on my own. On others, I just cry, overwhelmed by it all.

Ten years in, when I thought I was finding balance in my role, my legs grew unstable. Fatigue intensified and after years of medical tests, my younger son and I were diagnosed with mitochondrial disease — a cellular level powering problem.

When I’m too tired, my legs don’t work well. Clumsy, awkward strides slow me down and keep me from long walks, mountain climbs, and a lot of other activities. The year my oldest son graduated from high school, I had two unexpected surgeries in five weeks and fell way behind.

The world kept spinning as I limped and healed. Despondent, I often felt like I was letting my family down. Unable to fully participate and keep up, I felt like a failure.

Those feelings didn’t abate overnight. It took time to accept what I know is true — that being a mom is much more than keeping up with the silent standard of perfection our society espouses. Being a mom is mostly about maintaining heart connections that provide love and acceptance in the walls of our home.

Sometimes it means cooking when I don’t feel good, or sleeping in the car after driving to an early morning swim practice, or taking long afternoon naps so I can watch as evening band competition. I adjust much of my life so I can simply be present when possible.

And while it was hard to accept, even when I am tired, using a cane and moving slower than all of the other parents is OK — my presence matters. Simply because I am a mom — a mom to two talented young men who just need to know I am there.

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Thinkstock photo by Pavel Losevsky

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Dear Mom: These Are the Words I Don't Say Enough

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Dear Mom,

I always think it, but I never say it: Thank you.

Thank you for taking me to all of my doctor appointments, and for being my voice when I feel like I don’t have one. You are my biggest advocate, and without you, I wouldn’t be getting the treatments I am today, let alone have a diagnosis.

Thank you for sleeping on the tiny, uncomfortable bed next to me in the hospital for countless nights. I haven’t gone one night alone.

mother and daughter smiling

Thank you for speaking up for me when a doctor put my symptoms down to anxiety, and for always believing me when I say something is wrong. You know how much it gets to me when someone doesn’t believe my symptoms, and you made sure no one would do that.

Thank you pushing for more tests when we knew something more was wrong, and for not stopping until we found the answer.

Thank you for putting my needs before yours. I always tell to you to worry about yourself first, but you don’t listen .

Thank you for being assertive when it comes to my needs. I mean this in a very good way. Without this trait, I would have gotten wrong medications, had to wait months for tests or not gotten treatments I needed.

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Thank you for pushing me to do things outside of my comfort zone. When I think I can’t do something, all I have to do is look at you and wait for a certain look to know I can do it. You have taught me to be confident, not cocky, and to be assertive in the right moments.

Thank you for making me feel beautiful despite my tubes and scars. Whenever I try something on that lets one of these show, you say, “It doesn’t matter.” This has helped me get past being afraid of showing any part of my body that I feel uncomfortable with.

Thank you for being there for me in some of my hardest times. You’re the person I can talk to about anything, and without this, I would have to keep every feeling inside me.

mother and daughter in matching t-shirts at a race

Thank you for making me laugh when I’m having a bad day. You always know how to do it, and it really boosts my spirit.

Finally, thank you for loving me unconditionally. No matter what, I know you will always love me and that’s a feeling that can’t be described.

Although I may not say it, know I am always thinking, “Thank you.”

Thank you so, so much.

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The Walker, the Waves and Me

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Our yearly trek to the beach often highlighted my annual decline. And that year was no different. The waves crashed onto the beach as the sun warmed our skin. Entranced, I longed to throw the force of my body into the tide and feel the current carry me to the shore. But years had passed since I’d been that daring.

Diagnosed with mitochondrial disease and hypermobility disorder, I fatigue easily, which has an impact on my muscles and joints — especially my ankles and feet. Thus, walking on sand alone tires me out.

Strong young boys carried me to the ocean’s edge more than once that year. And when they weren’t around, I leaned on my grey walker for balance.

So, as the waves called to me, I should have ignored their plea. But then an idea hit. The kind I couldn’t ignore.

“Nathan,” I started, leaning toward my oldest son, “Will you help me into the waves? If I use the walker and you hold it steady, I can just stand waist deep for a little while.”

“You want to?” he asked. “Let’s do it.”

While others looked on in dismay, Nathan steered me to the water’s edge. There, his hands gently guided me and the grey walker into the churning surf.

Triumphant, every cell in my body smiled. While I rocked with the water, I stood steady in walker’s frame. When enough time passed, Nathan said, “Do you think it’s time to go in now, Mom?”

After one last wave washed over me, we slowly maneuvered back to shore. But when I sat back down, I felt stronger, more able, washed by the water, even.

I battle limits every day. After eight orthopedic surgeries to stay mobile, my feet ache. Nerve pain ricochets. And a recent fall in the shower resulted in another ankle tendon tear.

But memories can still be made. Especially when I let go of my pride, lean on an old grey walker and ask my 23-year-old son for help.

The author with her walker and her son next to her, both walking on beach toward water

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Thinkstock photo by valio84sl

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What Do You Do When You're Told Your Child Is Dying?

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I have spent the past year waiting for my daughter to die.

Findings and opinions were many.

A one-in-billions genetic mutation.

Only three known cases in the world.

“She’ll be dead by 15 months.”

“Enjoy your time together.”

That was the initial prescription – “enjoy your time together.”

Everything had been fine. I was living the dream. Beautiful little girl, loving family, fulfilling job.

It is really shocking how abruptly you can lose everything. Or think you have.

Anakha had been fine. There were no alarm bells. She was a “typical,” happy little 9-month-old.

Then, one day, she stopped crawling.

“She’s just tired. It’s the heat.”

“Don’t be ridiculous, Mama! She’s fine!”

Over the next four weeks, she lost independent sitting, rolling, grasping, and finally neck control. She stopped babbling. At 10 months, she had the motor functions of a 2-month-old. An MRI showed progressive cavitating leukoencephalopathy, which means there are holes in the white matter of Anakha’s brain, which controls all motor functions or movement. The doctors hinted at a “mitochondrial disease” but would not provide further information without a diagnosis.

At 13 months, the official diagnosis came. Multiple mitochondrial dysfunction syndrome – type 3. A rare genetic condition. Only three cases reported in the literature. The doctors told me she would only regress, that next to go would be the ability to chew and swallow safely. She would need a feeding tube. Then a breathing tube. And by around 15 months old, she would be gone.

Anakha was written off.

So what do you do when you find out your child is dying?

I will be honest. At first, you cry and scream. You grieve. You mourn. Your hopes and dreams, your future is shattered.

Allow yourself enough to feel the pain. You may carry the horror of that moment for the rest of your life. But when you emerge, you might be the strongest version of yourself there is.

You will do everything for your child. Anything for your child. You will push yourself to extremes unknown. You will tirelessly advocate for the needs of your child.

Mothers of children with these diagnoses, imminently terminal or not, are the toughest people I have ever met. I am proud to count myself among them. If you need to get something done, call one of us.

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We are warriors.

You learn how precious time is. Every moment must count. No wastage. You weed out everything superfluous in your life. What used to be major calamities to you are now laughable. Oddly enough, you may ease up and develop a dark sense of humor. You learn to live with the grief. It is always there and catches you in unexpected moments.

One of my Achilles is while driving alone, glancing into the rearview mirror and seeing that She. Is. Not. There. It reminds me that one day she may really not be there, permanently.

You can become financially unstable. Medical bankruptcy is real. You find creative alternatives for employment just to survive. I started my own legal practice, something I never thought I could do, as it gives me the flexibility to be home with Anakha and still engage in meaningful employment. It’s going well.

People you expected to lean on in a crisis either step up hugely or cannot handle it and fade away. You are hurt at first, but then move on because they do not matter anymore. And people you never expected to care become your rock.

So what did I specifically do for Anakha?

I did not listen to the doctors. I would not write her off.

It is astounding how common Anakha’s story is, of children being written off, only to defy the odds. She should be an outlier, but I have heard the same story repeatedly from other families.

As soon as I heard “mitochondrial disease,” or as we call it, “mito,” my science background kicked in. I researched, advocated for medications and services, contacted doctors and researchers around the world who study her specific condition and gene.

Anakha is now 27 months old. She has regained head control, grasping, rolling, independent sitting for short periods of time, and weight bearing. Her vision has improved. She gets around in a homemade wheelchair, made by my crafty mom. She can speak in short sentences and understands everything.

And her favorite words? “I did it!”

As a caveat: hope, love, prayer, belief and hard work do not mean your child will survive. But it may give them a chance.

Anakha is surrounded by a supportive group of doctors, therapists and family who believe in her and her potential.

Now, instead of waiting for my daughter to die, I live and laugh and enjoy our life together.

We live.

Follow this journey on Reboot Social.

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