To the Husband of the Wife Living With Chronic Illness

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“After we get married, everything will be sunshine and lollipops.” We said that a lot when we were engaged. We were in our mid-20s, stressed out from wedding planning, buying our first house and starting our first “real” jobs. We just wanted our lives to be normal and boring. Even though the vows we took eight years ago included “in sickness and in health,” we thought the “in sickness” part was way ahead of us.

wife and husband on their wedding day

I believed the daily pain in my feet and my stomach would finally cease after the stress of the wedding planning was over. I never could have predicted that soon after we married, those issues would not only become worse but also snowball into a laundry list of other debilitating symptoms.

I’ll never forget that you were in my corner when no one else was. You were there when doctors didn’t believe me or couldn’t find what was wrong.

It took me a while to realize this experience might be just as hard for you (or harder) as it is for me. I feel the improvements in my body during my good days and feel hope. You only see the person you love the most suffering.

I know you feel intense pressure to provide for me. Thank you for being a budgeting whiz and doing everything you can so I don’t have to stress about how we will afford my medical care.

I want to apologize for all of the times my chronic illness made life difficult for you. I’m sorry for all of those times in the ER when my symptoms scared the sh*t out of you and sent you into a panic. I will always remember the sight of your giant body sleeping across two hospital chairs because you didn’t want to leave my side. During the hardest times, I watched your heart break and before I could even process what was happening to me, my heart broke in response to yours. I wanted so badly to be cured just so that you wouldn’t hurt.

Devoted is the word that comes to mind when I think of you. It seems like a small word when I think about how much you have done for me. I know you would do anything to heal me, and you have done everything in your power to help me.

I want to thank you for each and every single thing you have done for me, but the list would be too long. I want to thank you for each and every sacrifice you have made for me, especially for quitting a job you loved to move thousands of miles away from your family and friends so I can live a better life.

You have given to me so selflessly, regardless of what I’ve been able to give in return. You deserve much more than my brokenness.

You want things to be easier for me, and I want things to be easier for you, resulting in the most ridiculous game of tug of war. I want you to stop sacrificing things because I want you to be happy. At the same time, I am immensely grateful because I know I would never be able take care of myself as well as you take care of me.

I think about what your life would be like without me: more freedom, more time, more money and a lot less stress. Sometimes I wish you didn’t have me as a burden so you wouldn’t have to sacrifice so much. Thank you for reassuring me that I’m worth it.

Thank you for encouraging me to put my health before my career. I don’t know what would have happened if you hadn’t pushed me to take better care of myself.

I’m not sure if you know how amazing you are. It’s not easy being married to me, but you have handled it with grace, integrity and strength. Anyone else would have walked away, but you’re still here holding my hand.

I have struggled and fought, but you are the real hero in this situation. You are behind the scenes working and giving, and that’s what has allowed me to fight. You are a lot stronger than you think you are.

I admire you and wish I could be more like you. You’re not only a great husband but a great human being. You are my biggest cheerleader and my best friend.

There is no one else I could have traveled this journey with, and I wouldn’t be here without you.

You’ve taught me what it is to love. You’ve taught me how to be selfless. You never let me give up.

I am healthier because of you. I am stronger because of you. I have hope because of you. I feel loved because of you.

Follow this journey on Tricia Barendregt’s Facebook page.

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6 Things People With Illnesses Need to Stop Saying in Support Groups

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Support groups are wonderful for those of us with illnesses others just don’t get. Groups on Facebook can be great and convenient, but they can also be hostile and dramatic. I know illness can lead to high tension, but we are supposed to be supporting each other. So here are some things I noticed happening a lot; things that we need to stop.

1. “This cured me; it will cure you.”

Suggestions are more than welcome in support groups, but people often fail to make a very important distinction. Saying something may help or it helped you is not the same as insisting something is a cure. People with incurable and under-researched diseases are likely to witness this. Someone may insist a workout program, biofeedback, a diet or drug is the cure for their disease. While we are all incredibly happy that it helped you, please stop getting other people’s hopes up. Just because you were helped by something, doesn’t automatically mean everyone will be, too.

2. “I accomplished _____ through hard work; you can do anything!”

Support groups are about support — celebrating the good and the bad. So if you graduated from nursing school or ran a marathon, I will be so happy for you. But I believe saying “Don’t let this get you down” or “You can do anything, too” does more harm than good. Not being able to exercise, attend school or work can already be difficult to deal with. But feeling like you should be able to do those things because someone else with your condition can could make you feel worse.

So I suggest we encourage each other, but keep in mind that some people are extremely limited. Not all of us can “push through” and run or work again.

3. “It could be worse.”

It can always be worse. That’s true, but it shouldn’t affect how we empathize with each other. Someone’s struggle doesn’t have to be diminished by another person’s struggle, and seeing someone struggle with something worse isn’t going to make you feel better.

4. “At least you don’t have…”

This is similar to #3, but in this case, you’re comparing your own issues to someone else’s situation.

Sometimes when I see people complain about something that doesn’t seem like a big deal, I fall into this mindset. Just because I may feel things are worse for me doesn’t make things easier for the other person. It’s still difficult for them! They’re seeking support and a place where they can complain and relate with others. When we compare our situations to other people’s issues, we are taking that place away from one another.

5. “I would rather have…”

I’ve heard some patients with invisible illnesses say they would rather have a well-known disease. While I think (or hope) most of them meant they wished they had a condition that has more research, more advocates and visibility in the media, this is still a massively insensitive thing to say. It trivializes the challenges people with those diseases face. So instead say, “I wish my condition was more visible and researched.” 

6. Attacking someone who is trying to understand/help.

I see this often. Someone will post to a group with a question, and people will answer with their experiences or opinions. Then everyone jumps down each other’s throats. Experiences and opinions shouldn’t be attacked. Seeking information shouldn’t be attacked. Differences in opinion are OK. Please stop attacking each other.

We are supposed to be supporting each other. I’m in one group where multiple threads have been taken down due to the animosity in the comments. If everyone stopped saying these six things to each other, I believe we could all get along perfectly.

Just keep in mind that we’re all different, and our experiences won’t be the same. Don’t compare experiences or assume yours is similar. Support each other! It’s the entire point of a support group.

Follow this journey on EmilyCoday.com.

Lead photo source: Thinkstock Images

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To the People Who Ask for Updates on My Baby’s Medical Condition

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Dear Well-Wishers,

Thank you so much for taking an interest in my baby.

I know you are genuinely concerned and interested his well-being. I will most likely give you some variation of the following: he’s doing great, we have a date for the next surgery, he’s the cutest baby ever, he giggles now, he’s looking more like his dad every day.

I won’t tell you that I hold my breath at every cardiologist appointment, terrified that they’ll admit us immediately. That we’ll be ripped from our home and my son won’t sleep in his crib again for many weeks — maybe months.

I won’t tell you that all of the occupational therapy, speech therapy, physical therapy, neurology, ophthalmology, whatever-other-specialist appointments are wearing on me. That time I should be spending rocking my son to sleep for a nap is spent on the road in a car seat or in waiting rooms.

I won’t tell you that I watch every move he makes, taking notes to bring to appointments. That our celebrated milestones are smaller than most — he reached for a toy, he brought something to his mouth, he tracked one of us all the way across the room.

I won’t tell you that many times throughout our day, I fumble with his prescribed O2 sensor. I curse it as it struggles to read his oxygenation level while he happily kicks on his changing table. I won’t tell you how my heart sinks as that number drops incrementally over time.

I won’t tell you that I watched him stop breathing hours after his first surgery, that we were asked to leave the room as the surgical team was called back in. That we could hardly make it down the hallway for the rush of nurses, doctors, and respiratory therapists going in. I won’t tell you how that moment replays in my mind during quiet moments, and that I’m terrified I’ll watch it happen again after his next surgery.

I won’t tell you that I worry how his scars will effect his self-esteem. How it saddens me that there are so many physical activities he will never be able to pursue. How I wonder if he’ll feel left out, being sidelined without even having had a chance to try out.

Maybe my bare-minimum medical updates leave you so dissatisfied that you reach for common ground. That you want to empathize so badly that you tell me about a friend-of-a-friend’s nephew who was born with a hole in his heart, had surgery as a toddler and is now 12 years old and doing just fine. I smile and nod, but it’s a story I’m tired of hearing. That is not our situation and that will not be our lives. At 12 years old, I anticipate my son will be undergoing his fourth or fifth open-heart surgery, with surgeries promised to follow.

Maybe if I gave you all the harsh facts of his diagnosis and all the dirty details of our daily lives, I would be spared that same old friend-of-a-friend story. Maybe if I kept a blog of my son’s medical “journey,” you wouldn’t have to ask at all. It isn’t that I don’t want to share or that it’s too hard to share. It isn’t that I don’t appreciate your interest or your concern.

Well-wisher, when you ask me how my baby is doing, your voice drops an octave or two. You look pensive, hoping for the best but preparing for the worst. The question mark at the end of your words hangs heavy. I know that these are social cues meant to convey care and concern; that you mean to tread lightly just in case the update is bad. I appreciate the position you are in.

But it only reminds me that my baby’s story is a sad one to the community at large. While his medical condition is sad, it is not his whole story — nor do I want it to be. When I gloss over his medical status, do not be dissatisfied and reach to connect with your friend-of-a-friend story. Listen to what follows the medical status: He’s the cutest baby ever. He giggles now. He’s looking more like his dad every day.

Tell me how your child’s first giggle brought tears to your eyes. Ask me whether my baby’s dynamic little personality is more like mine or his father’s. Ask me if he’s sleeping through the night, if he has reflux, if he likes our dog, if he fights diaper changes, or if he likes car rides. Ask me if I have pictures of the cutest baby in the world. Because I have thousands, and I’d love to share our absolute joy with you.

Marli Carton's son

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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. Check out our Share Your Story page for more about our submission guidelines.

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I Saw What I Dislike About My Body in This Photo. Then I Saw This.

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At first glance, I see my round face. I see what I dislike and what makes me feel most vulnerable. I say, “Yuck, I won’t be showing this one off.”

That angle is not my best. Anything but that. I’m 35 weeks pregnant, and with each pregnancy, I seem to carry this plush padding that I otherwise don’t carry on my frame. It’s foreign and a wee bit scary to me.

I can also see the fatigue in my eyes, even though I’m trying hard. That day was a rough one, and nausea and aching back bones nearly had me collapsing in the grass. It was one of those days where I really didn’t want to capture the beauty of pregnancy.

You see, pregnancy and I often bonk heads — hard. I am one of those women who sheepishly admits I don’t like being pregnant. I know it’s awful to say, since many women struggle with infertility, but I have my own struggles in my physical body that just make pregnancy dang hard.

When I first saw this photo, I kept scrolling. Oh dear, I thought. But then I felt a raw burning in my eyes and emotions creeping up and into all of me. I saw what I failed to see at first, blinded by my own judgments towards myself.

Michela , pregnant, holding her daughter outside on the grass

Looking at this photo a second time, I see so much more.

First, I see my daughter’s beautiful, precious feet.

I see feet that are crooked, because she hasn’t ever walked. I see feet that can cause her pain. I see feet that have been wept on, kissed a thousand times, bruised by IVs, covered in plaster and casted. I see feet that bring good news, shod with grace and glory. I see tiny seashell pink toenails, and a milky brown beauty mark smack dab in the middle of her left foot.

I see legs I know so well, covered in luscious layers of fat, but lacking muscle tone. These legs have been caressed and cradled in our arms since day one.

I see a body, wholly dependent on me to carry her, near or far.

I see my precious child, unable to move but full of delight and joy and inner strength.

I see how my hands hold her, just so. Curved around all the vulnerable parts, careful to keep them tucked in so they don’t fall by her side and threaten another fracture.

I see my blonde curls and hers, too. She has my curls.

I see just how breathtakingly beautiful she is, just as she is.

I see the smile on her face that says: This is so fun, don’t ever let me go, Mama!

I see it in my face, too. I will never let you go, my darling.

I see the wings of a protective mother enveloping her daughter. I see a very pregnant belly, hanging low. Inside, a baby feels the weight of his or her big sister against its bum.

I see my titanium and bone spine that bears the weight of a quickly growing baby and a 3-foot-tall toddler.

And then I see it, and my eyes start to fill with tears. I’m thankful no one is around to watch me cry over a photo of my own self and my little girl.

But I see it, I finally see it. Strength.

I see the years…the years of hard laboring and weeping and groaning under the weight of all the brokenness in the world. Maybe that’s what’s lining my eyes, pooling there around the rims.

I see a mother.

I see hope.

I see beauty.

Too many woman don’t accept their bodies and fail to see the beauty in front of them: I need a face lift, I need to lose weight, I’m too skinny, I’m too fat, if I could just change this, if I could just lose that bit there, if only my hair looked less drab, if only my skin were clear, my teeth straighter.

But I choose to see beauty. The most beautiful people I know accept their so-called broken bits and misfit pieces — the typically unwelcome features and attributes in this perfectionist world.

There is a lot I would change about the photo if I could, and it wouldn’t be the angle. It captures a moment on my timeline as a mother, one that I will never experience again.

Four weeks after this photo was taken, I gave birth to a healthy boy. And seven months after that, my precious daughter passed away.

This photo means the world to me.

Read more from Michaela at Michaelaevanow.com.

The Mighty is asking the following: Share a photo with us and the bigger story behind it. What don’t we see in that photo? 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 Share Your Story page for more about our submission guidelines.

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When You Feel Like an Outsider at a Baby Shower

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I live in an apartment. I come home and take the elevator up to the third floor. It’s not a fancy elevator. It’s one where you are keenly aware that you are in a metal box being transported between stories.

This particular one has a gap between the elevator itself and the floor. You can see this gap as you step across it. It’s like a gaping abyss. But smaller. I’ve always been afraid of bottomless holes. Of spaces where you can never stop falling. The gap between the elevator and the building always feels like one of those to me. I grasp my keys that much tighter. Because to drop them down there would be to be doomed. Or at least, that’s what it feels like.

Today, I went to a baby shower. These two things shouldn’t feel connected. But for me, they are.

The last baby shower I went to, before this one today, was my own. To me, they represent hope. They represent possibility. They are all about what is to come. And for the guests that means childbirth, and being a mother in all its challenging glory, but nowhere in those expectations is what I experienced.

I feel like parents like me, parents of kids who fall outside the category of “as long as it’s healthy,” dropped into that gap between the elevator and the building when we had our children. We expected to get on the elevator. We were told that was what was going to happen. And suddenly we were looking up saying, “What? Why us?” We heard ourselves and others say at our baby showers, “five fingers, five toes, healthy and normal” as if anything else was out of the question.

I should have never had to feel like this was anything but normal.

When you are pregnant you have all these ideas of what parenthood is. So many of them are wrong or misguided. But most of them are not as far off as the reality a special needs parent faces every day. Every parent has to adjust to the reality of parenthood. But when even the horror stories of breastfeeding and colic seem like fairy tales, it can be hard to accept that this indeed is your normal.

The baby shower today was lovely. I felt hopeful and excited for the mother to be. But I also felt cheated, and sad, and like I had seen something that had ruined it for me. I saw the other pregnant woman who were talking about realistic concerns like birthing plans and whether they would have a water birth or an epidural and I felt like an outsider. Like a cynic.

My journey involved finding out my daughter, Eva, was blind and deaf within days of her being born. It involved finding out she had multiple heart and brain abnormalities within the first week of her life. It meant giving up on breastfeeding and then bottle feeding. It involved hospital stays and frightening illnesses and never really knowing what the future would hold. While she had 10 fingers and 10 toes, she was not healthy, she was struggling to breathe, the smallest cold put us in the PICU and I was left feeling that somehow I had missed the boat, fallen through the crack, been left behind.

My journey of motherhood is not everyone’s, and I felt more than ever the need to reach out to those other mothers like me. To know we are not alone. To normalize our experiences of motherhood so we don’t have to feel like we have fallen in that gap between the elevator and the floor. So we can feel like our experiences are normal and valued and worth talking about.

So we can feel like that hope and wonder and joy at a baby shower doesn’t need to end if our baby turns out to be Eva or one of the other one in a million babies.

Follow this journey on The One in a Million Baby.

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What Most People Miss When They See This Photo of My Daughter Playing

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When you look at this picture you most likely see three little girls on a tire swing, and I don’t disagree.

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But if I let myself look a little longer, specifically at my daughter in the middle, I see more.

Here is what I see:

I see a little girl, who used to be completely blind, looking at something.

I see a little girl, who for most of her life would not touch anything, holding the rope and allowing her hands to scrunch up against the fists of her friends.

I see a little girl, who used to throw herself backwards whenever she was in the upright position, sitting on a tire swing, leaning in towards her buddies, being a part of the moment with them.

I see a little girl, who used to become overstimulated and overwhelmed with every new experience, spending the day at a farm she’s never been to, on a swing she’s never sat on, doing an activity she’s never done before, staying calm and having fun.

I see a little girl, whose neuropsych testing earlier this year described her as having the cognitive ability of an 8-month-old, continuing to hold on to that rope because she’s smart enough to know she will fall off if she lets go.

I see a little girl, whose prognosis as an infant was “vegetative state” if her hundreds of seizures a day did not stop, alert and engaged, interacting and participating in a play date.

I see a little girl, who’s been repeatedly deemed by her health insurance company to have “no restorative potential,” bursting with potential, overflowing with possibilities, perfect exactly the was she is, filling her own unique spot in this world, and in absolutely no need of restoring to anything for anyone.

I see a little girl, whose doctors warned before her birth “may not be salvageable,” alive and joyful, making the world a better place simply by being who she was made to be.

And I see two precious little buddies, unaware of everything I’m seeing, simply loving on their friend, no questions asked.

Three fabulous girls? You are absolutely right. I see that too.

Follow this journey on I’m Julia’s Mom.

The Mighty is asking the following: Share a photo with us and the bigger story behind it. What don’t we see in that photo? 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 Share Your Story page for more about our submission guidelines.

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