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5 Ways I Wish People Supported Me After My Child Was Diagnosed With a Rare Disorder

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Twenty-three years ago, my daughter was diagnosed with Aicardi syndrome. As I tried to process all the information and implications, I also tried to help family and friends understand how to help us cope. I appreciated their
efforts and advice offered in good faith, yet none of it helped much. 

We did our best to navigate uncharted territory while still attempting to retain our lives as we were accustomed to. In retrospect, these are the five ways I wish people could have supported me after my daughter was diagnosed:

1. Help with the housework until I got my feet back under me. 

Laundry, vacuuming, dusting, floor mopping and caring for a house is very low on the priority list. At the same time, seeing these things left undone is a great source of stress.

Taking care of an infant with medical issues, a healthy 3-year-old and a spouse are about all I can handle. When the basic housework is left undone, I feel completely inadequate.

I’m learning words and procedures I don’t yet understand while trying to keep my family going. If you would just take over one task for one day, such as laundry, it would help a lot. Dropping off a meal that just needs reheating and some paper plates would keep us healthy and make the end of the day that much easier.

2. Listen to me.

When I voice my fears about the development of my baby, please don’t act as if I’m overreacting. I’m the one who has been talking to the doctors and doing research. When you tell me to “stop borrowing trouble,” it invalidates my feelings. It makes me feel more alone.

Please listen to me, hand me tissues, entertain my other child or make me a cup of tea, then remind me that only time will tell how well my child develops. Reassure me we will learn to cope with whatever comes along.

If I hold in all the inevitable negative thoughts, I won’t be able to find the positives. It would be a shame if I missed any of the good things because I was so focused on the negative ones.

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3. Encourage me to step away for a few moments. 

Learn how to care for my child and help me see that even just stepping outside by myself for 5 minutes will refresh me. I will be against this, but if nobody gets me to see that caring for myself is just as important as caring for my baby, I will burn out. Help me understand that even sitting with a cup of coffee for 10 minutes while someone else takes over will benefit us all. 

I need to learn that my way isn’t the only way and that my baby needs a break from me as well. We all need contact from more than one person in our lives. Eventually, I may be able to leave her in someone else’s care for an hour or two at a time. 

This will allow me to feel like myself instead of a nurse/therapist/teacher/doctor/researcher all wrapped up in one. I need to remember who I am in order to be the best person in whatever role is required of me at any given moment.

4. Please don’t give me the “You’re never given more than you can handle” or “She has the right mother” speech.

Really, I’m not that special. Every day people are taking care of their kids no matter what is required, and I am no different. My kid’s needs are just not as mainstream as most. It doesn’t make me super or strong. It just makes me a decent parent.

5. Be honest with me. 

If you feel uncomfortable around us, please try to figure out why. Maybe we can talk about it. Don’t just stop calling and coming around without explanation. I already feel like the odd one out, and when you drop out of my life, you are taking away the support I need while I’m trying to make sense of everything. 

This diagnosis changes the rhythm of our lives even more than simply having another child does, and we will all need to constantly adjust to new circumstances.

Imagine doing that while mourning the loss of someone’s presence in your life as well. I’m sorry if I don’t seem like much of a friend right now, but if I didn’t feel comfortable enough with you being cranky or crying, we wouldn’t be that close. Leave if you must, but please tell me you’re taking a break. If you can’t do it in person, at least send me a note so I’m not left wondering what I did wrong.

Helping any caregiver to cope may be one of the most important ways to support them. Don’t underestimate how much doing even one little thing for them will help. 

Caregivers need to know someone cares about them. If you ask them what they need and they don’t know, then look around. Chances are, you’ll be inspired to do something for them they didn’t even realize they wished someone else would do.

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 check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the Person Who Called Me 'Disturbing' for Giving My Child Medical Marijuana

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You wrote me an anonymous email. You said that my views on medical marijuana  are “disturbing and disgusting.” You also added some other things about how God will judge me soon, but that “disturbing and disgusting” part… that hurt the most.

I just wanted to say thank you.

It took me a lot of time to sort this out. Because your words deeply wounded me. But in that quest for the healing of my heart, I realized I can thank you. And that has  brought healing in itself.

Thank you for cementing my resolve that I would do anything to help my daughter. I give her medical marijuana through her feeding tube three times a day. It is a strain that is high in Cannabidiol (CBD) and low in THC so she does not experience the high usually associated with the drug. Since we started it a year and a half ago, her seizures have been reduced by 75 percent. This is after seven years of watching her seize every day. After trying 10 different anti-epileptic drugs without great success. Imagine lots of tears and sleepless nights mixed in. Do I have one regret about medical marijuana? Not one. Would I run through a glass door if they said that would stop her seizures? Absolutely. Thinking about what could possibly be “disturbing or disgusting” about finding a treatment that finally works has solidified my determination that I will do whatever it takes. No matter the cost, no matter the ridicule, I will do my best for my child. Aicardi syndrome has already taken too much from her. She deserves to have parents who will do whatever they can to give her the best life possible.

Thank you for teaching me to stop the never-ending judgment reel in my mind. Each one of us has a constant line of judgments running in our minds. Well, I assume you do too. She shouldn’t be wearing that. How can they afford that car? She is rude. He is driving too slow. Their kids are out of control. That guy talks too much. It is always running… unless we consciously stop it. We have to renew our own minds. Our minds will go there on autopilot unless we decide not to let them.  

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Because I was so mad at you for assuming you know what we have been through, I realized I too have no way to know the road each of these people has trudged to get this point, on this day, where I am judging them. I will renew my mind when that judgment reel starts playing and will choose to focus on the things in my own life that need refining before determining things that need to change in others, especially when I do not know the full story. Which is probably most of the time.

Thank you for reminding me to be careful with my words. Words have power. They can either breathe life into another. Or they can suck it out. Few neutral words exist. I had several days taken from me because of your anonymous words. You probably have not thought of me again. Words have power. I want to use them carefully.  

Thank you for teaching me the importance of saying “me too” as often as I can. When I read your email, my first ache came from feeling alone. You may not know this. Parenting a rare child can be lonely and isolating. In this case, all I could hear was… yep, you are the only one dealing with this. And everyone thinks you are disturbing and disgusting. She is just the only one willing to say it. Have you been there? I really needed to hear someone say, as author Brene Brown says, “the two most powerful words when we are in struggle, ‘me too.’” Showing up, coming alongside and just saying “me too” can heal lots of wounds.

So to you, the author of the email, I say thanks. Thank you for making me stronger.  

Thank you for making me kinder, I hope. Thank you for making me gentler, I pray.  

Thank you for making more aware of the need for “me too.”

You probably thought I’d fire back. But the beauty of raising a medically fragile child is… you get strong and with that, you learn to endure pain and keep moving forward.  

Onward, with more grace and love, hopefully for us all.

Follow this journey on God’s Alive!

The Mighty is asking the following: Write a thank-you letter to someone you never expected you’d thank. 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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What the Research Didn’t Tell Me About My Daughter’s Rare Disorder

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Dear Aicardi Syndrome,

When I found out that you were part of our lives via our beautiful baby girl, I read everything I could find about you. It was not uplifting information.

The medical literature said that with you in our lives, we could not expect our daughter to live beyond early childhood. It did not say that 22 years later, I would sit with her across from a neurologist who is beaming because my daughter is still alive.

It said there would be significant developmental delays, but not that she would thrive in spite of them.

It said that there would be uncontrollable lifelong seizures, but didn’t mention that these seizures would cause us to bond with parents from all over the world. In fact, we would find some of our best friends through parent groups, and they would remind us how to laugh.

The reports said that she would have visual deficits, but there was no mention of how, despite being legally blind in one eye and having less than perfect vision in the other, she would love looking out the window as we drove. There was no description of how intently she would look at us when we read her a story, or the way she would gaze into our eyes with trust and love.

The information I read was old. It mentioned some with Aicardi were sent to live in institutions and that she would likely not be able to walk. It didn’t say that we would find ways to care for her at home and give her mobility with a wheelchair.

That terrifying information I read about you never said our daughter would share many of the same life experiences as her older sister, and would join the Scouts, win gold medals in bowling, join clubs and be in Christmas pageants and concerts. It didn’t tell us how she’d love going to parties and dances, or enjoy Sponge Bob, funny videos, being outside, riding the school bus and going to the mall.

It didn’t mention that she would light up when she hears her father’s voice, lean against me when she isn’t feeling well or tease her sister. I didn’t read anything about how she would touch the lives of all who meet her and be popular among her peers. It didn’t hint that without the ability to speak she would still find a way to effectively communicate her feelings.

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There was nothing about how we would accept you as part of her, and go days without even thinking your name. In short, Aicardi Syndrome, the literature about you didn’t tell the whole story. Because even with all the challenges you brought here, life for and with our daughter is as full and joyful as anybody’s could be.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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 the ICU Doctor Told Me That Changed My Life Forever

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She was vomiting and sleepy. The neurosurgeon suspected hydrocephalus and scheduled emergency surgery for the following day. My daughter, Reese, was 3 months old and had recently recovered from her first brain surgery shortly after birth. Another emergency surgery — my heart could barely stand it.

I remember being terrified that morning. The surgeon walked in with his convenience store breakfast in hand. I couldn’t help but think, “You mean you haven’t already been awake for hours eating blueberries and flax seeds, looking over her scans and preparing yourself for this surgery?” My fear increased.

Although the doctor said the surgery went perfectly, they allowed us back into the recovery room too soon. Reese’s eyes looked crazy, darting all over the room. She could not hold them in one spot for even a second. I frantically asked the nurse what was wrong. She assured me this was a normal part of the recovery process and that her eyes would normalize within hours.

Terrifying moments. Terrifying days. Every parent of a child with serious medical issues knows what I am talking about. The beginning is the hardest — so many unknowns. Every medical term is new. The smell of the hospital is new. The wondering what our lives will be like from this point forward — terrifying and new.

Reese had survived her second brain surgery in just three months. My husband, Mario, and I were still reeling. It was so much to digest in such a short time. In the middle of those three months, we had also received Reese’s diagnosis: Aicardi Syndrome, a rare genetic brain disorder. When I Googled it for the first time, all I remember seeing was “In Loving Memory” and “7 to 14 years.”

We settled into the Pediatric ICU for recovery. The attending physician came in to meet Reese and make his initial assessment. We chatted for a moment and realized that we had a friend in common. He closed the door for privacy and as a respite from the noise of beeping machines and alarms. I remember him saying something like this:

This child will change your life. She will change her siblings’ lives. They will grow up to be special people because they will learn early on that they are not the center of the universe. I see incredible siblings develop alongside children like Reese. She is a gift.

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I lost it right there. Tears of the blubbering kind. His words were like a salve to my burdened soul. He was kind. His words were loving. His words were meaningful. It was unexpected. He didn’t have to do that.

Few moments in my life fall into this specific category. My perspective was changed. Because of this doctor’s words, my thinking shifted from how we could help our other children survive Reese’s illness to how Reese’s illness would actually shape them into the best versions of themselves. Because, after all — unselfish, authentic people are my favorite people.

girls on swing

Kind words. Encouragement. Taking time out of a busy schedule. These were all gifts this ICU doctor gave us that day. His kindness changed my perspective. It changed my life.

One of the greatest blessings of our journey with our medically fragile child has been experiencing the kindness of extraordinary people. I’ve become inspired to be more like them. Loving people just for the sake of loving — without receiving anything in return, without a sense of duty, just for the sake of loving — has the power to transform lives. It has transformed mine.

mother kissing daughters cheek

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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The Moment in an Art Class That Showed My Daughter's True Potential

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When my now-22-year-old daughter, Hillary, who is diagnosed with Aicardi syndrome, turned 3 and left early intervention services, we chose a self-contained special education school with a therapy-based program to begin her school career.

I struggled to see, even after nearly three years with early intervention therapies, how she would ever fit in anywhere, as she was usually the most challenged of her peers in the program. To put this into perspective a little, I had stopped hoping she’d be able to feed herself and chew. I was content that she could hold her head up while being fed pureed food and thickened liquids.

At the time she entered the public school system, I was not working outside the home, so I was free to visit the school whenever I pleased. The staff was always welcoming and happy to have parents and siblings visit, and I took my older daughter with me when she didn’t have school. I felt it would help her to see that her sister was safe and had peers just as she did.

While I saw all that, too, I still had a tough time seeing her as doing anything “normal” enough to fit in outside the walls of the school… until one day when visiting and I sat in on her art class. In that room, I saw the most amazing thing.

Hillary was engaged in an art project, with the help of an assistant and the art teacher. She and the other five students in her class sat in their Rifton chairs around a half-circle table with the art teacher sitting in the middle. He was interacting with each one by turn, talking about what they were doing, and using hand over hand to help accomplish the task. It was overwhelmingly such a “normal” thing for preschoolers to be doing that it struck me that my daughter would be able to participate in activities with regularly abled peers with a little extra help.

She would, regardless of her challenges, be able to do all the things her sister did. It really changed the way I looked at what Hillary could do and how her life could be.

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After that, I enrolled her in the Sunday school class for her age group at our church. I was amazed at how much she liked it and how interested she was in what her peers were doing.

As she grew older, she was able to join a Girl Scout troop in town, and when we decided that she should leave the self-contained school and be in our town’s schools, she was able to participate in chorus (even though she is non-verbal), wood shop, keyboard lab, and art classes with her peers.

As she grew she was able to have most of the “normal” experiences of childhood that her sister did. There were even times when she and her sister were on stage together for chorus, in parades together with Girl Scouts, and participating in the church’s Christmas pageant together.

Seeing Hillary in that art class helped me to see beyond what she wouldn’t be able to do, and realize all that she could achieve and experience in her life.

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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These Small Acts of Kindness From Strangers Got Me Through the Tough Times

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At the age of 4 months my beautiful baby girl was diagnosed with agenesis of the corpus callosum, retinal lesions, infantile spasms and developmental delays, which all together is Aicardi syndrome.

Life became more challenging in an instant.

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Over the past 22-plus years, as I grumbled my way through crowds at the mall and cried inside at amusement parks, there has usually been someone who extended an unexpected kindness, reminding me others see my daughter’s value and recognize our family’s challenges.  Sometimes it’s as simple as stopping to say hello to Hillary, unfazed by her nonverbal answer, or opening a door as we approach pushing her wheelchair.

For her last birthday we took her to a local street fair where she was showered with balloons and trinkets from vendors and community organizations there.  One time we were traveling and a woman stopped at our restaurant table to tell me what a good mother I was. It was a gesture so simple, yet so powerful and needed at the time. I still tear up when I think of it.

When Hillary was 7 we were at the mall shopping in the Disney store and unbeknownst to us we were being watched. We exited the store and began walking through the mall when we heard a man calling to us. We stopped and turned around as he approached, holding out a small snow globe with Cinderella’s glass slipper inside.  He said he had been watching us in the store and Hillary had touched his heart.  The snow globe sits on her dresser where every morning and night I am reminded of how kind some strangers can be.

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It was around the same time that we went on a Girl Scout family trip to an amusement park.  As we were sitting on a bench with Hillary next to us while her older sister and her friends went on rides we were approached by a small group of giggling teenagers.  One of them held out a red stuffed dragon toy to Hillary and asked us if it was OK to give it to her.  It also is in her room where I see it every day.

Such incidences of random kindness are kept in my memory like treasures in a box.  I examine them on those days when I need an extra reminder that there is so much good in the world.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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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