Dear Mom and Dad,

I know this came out of nowhere. We’ve had so many kids in our family who’ve gone through similar situations as part of the “terrible twos” growing up, but nothing quite like this. My sensory overload is going to be something we’ll need to constantly work on 24/7. My five senses are heightened because I’m still getting used to my surroundings. Trying to transition to this world is something that will take a lot of practice for me and patience from both of you.

I will hide under the couch when I hear lighting during a thunderstorm. My hands will constantly be up, shielding my ears to make the noises less loud. Whenever someone new tries to touch or hug me, I may run to the corner and put my hands over my eyes until that person goes away. Other times, I may run to the top of the stairs and scream, “Go away!” so I can be by myself for a little while. When we go out, I may need to wear special sunglasses to keep the sun from hurting my eyes. When I go to the amusement park, you may feel I’m out of place because I’m so scared of the rides and when I ask to eat vegetables instead of fried Oreos. 

When I have tantrums where I sink to the floor — crying out of control no matter what you try to do to soothe me — are probably the hardest on you both. No matter what sense it is, I may feel my heart racing a little bit faster than usual, and because of this, everything is heightened to a whole other level.

Some around us will say these are just tantrums. Others will say I’m just a spoiled kid who doesn’t know any better. What the world doesn’t understand, though, is that you both love me more than anyone else out there in the world, and that you two are the ones who understand me the most. You are my greatest advocates and have the inside track to help me when these meltdowns happen. I know these first years will be tough, but we’ll make it through because we are strong.

Whatever does happen, just know you’re my biggest advocates and I couldn’t do what I’m doing today in my life without you. We’ve certainly come a long way since I was diagnosed with autism at 4. Now I love all types of foods, can take the train to work every day, go to an Imagine Dragons concert and stand right next to the speakers and everything is OK.

But for now, when the next meltdown comes, don’t be discouraged if you don’t know how to help me. Sometimes it will just take time for the meltdown to pass, and as I heard you say a million times, “find my center” and calm down. You will keep me safe until that time comes. You’re always trying to figure out the miracle way to help, but just know at the end of the day, you’re already giving me that…

And that’s love.

And if another parent who is going through this with their child ever reads this letter to you, let them know someday their child may tell them how grateful they are to them.


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I thought I had this all figured out. This whole parenting a medically fragile child thing. 

I figured out how to be pregnant with a child with an unpredictable future. The scary parts, the uncertainty — I learned to deal with it. I learned how to remain cautiously optimistic for my baby’s future and for all our futures. I learned to focus on the kicks, the rolls and the reminders my sweet baby was safe and sound inside of me.

I learned how to be a parent to a newborn, an infant, in and out of the hospital (Ok, really, just “in,” punctuated by a few brief respites on the outside). The constant worry, the multiple surgeries, the beeps and alarms of machines. The steady hum of life inside the Intensive Care Unit. I learned to live life one day at a time, to anticipate the roller coaster and enjoy the highs as much as I could.

I learned how to parent a medically fragile toddler, celebrating milestones a little later than his peers. I worked with his pediatrician, his nutritionist and his cardiologist to get him finally, blessedly, on the growth charts. I navigated the regional center system, added therapists and learned the difference between a “developmental preschool” and a “traditional preschool.” I learned the buzzwords. And I watched him grow and thrive.

I learned to walk beside my preschooler and watched him try his hand at traditional preschool, excelling in some areas while being challenged in others. I saw him through another open-heart surgery, and learned to gauge how much to speak about it in front of “listening ears.”

Last month, I watched him don a cap and gown and graduate from preschool, ready to take on the world of kindergarten.

None of this was easy. It was fraught with fears and failures along the way. But my husband and I, we figured this out. We have a handle on what it means to parent a medically fragile child, and all the ways it was different than parenting our typically developing older daughter. 

But now, standing on the edge of his elementary school years, I realize I have no idea how to do this. I have no idea how to parent a medically fragile school-aged child. 

I’m so beyond grateful to be here. We were never given any guarantee we would get this lucky.

But, truthfully, everything is about to change. 


For us. For him. For his teachers. 

And I’m terrified.

We’ll have to start by letting go a little bit. Yes, this is true of every kindergarten parent, but is even more so when your child has a major complex medical condition. It’s so hard to let go of the constant surveillance and monitoring, and to let someone else step in and do it for you. I’ll have to start relying on a teacher to know when he’s “off.”

We’ll have to start having discussions about 504 plans and whether his school has an automated external defibrillators on site. 

We’ll have to start scheduling doctor’s appointments, not whenever the doctor is available, but so he’ll miss the least amount of school. We’ll have to face the missed days due to viruses. With a half a heart, every virus has the potential to take him down quickly and mercilessly, possibly landing him in the hospital. 

Things may be difficult for him that are not for his peers. With Hypoplastic Left Heart Syndrome, learning difficulties are very common. He may have trouble organizing his thoughts, his writing and his priorities. He will have to learn to compensate for all of this. 

He will have to know his body — what limits he needs to set for himself. How hard can he play? How fast can he run in P.E.?

And, more than anything, as he becomes more aware of his heart, what it means, and how it makes him different from his peers, he will have to decide how much of his story he wants to share, and with whom. That’s a lot to ask of a 5-year old. I think it’s this self-awareness piece that scares me the most.

Every bit of his journey thus far, I have been able to walk with him. I have been able to protect him, love him and encourage him. But the start of his elementary school years mark the part of this journey he will walk alone. This part is uniquely his. 

And I am not ready for this part of parenting a medically fragile child. 

Not one little bit.

But I know I will figure it out. And so will he. 

Just as I figured out how to remain upbeat after a doctor told me my baby would be born with a half a heart. Just as I learned to find hope amidst multiple open-heart surgeries and prolonged ICU stays. I will figure this out as well. 

I will reach out to hold the hands of my fellow heart moms, the ones who have walked this journey ahead of me and who are walking alongside me right now. I will learn from their experiences.

I will seek solace and support in my friends and family, who have held my hand and prayed over our sweet boy all along.

Together, we will help pave this next part of Bodie’s path for him.

Because my little guy, weak heart and all, is counting on us to figure it out. 

And I’m not about to start letting him down now.

He has risen to every challenge we’ve placed in his way.

So now it’s time for me to meet his challenge. 

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It was the second time I had fallen on that square of sidewalk. A divot resembling the state of Michigan flipped sideways caught my dragging left foot. I went down hard with my arms extended and my hands receiving most of the impact. I laid there for a minute, staring down at the small cuts that crisscrossed my palms and then examined a bloody elbow: It matched the other one from the previous fall a few days before. My friend, Chase, hurried back to see if I was OK. I collected myself and inhaled, relieved that I had fallen correctly.

One of the first concepts physical therapists teach in therapy after a patient becomes ambulatory is not “don’t fall,” but how to fall. Many times as a child, I would practice falling correctly: “Place your arms out in front of you,” they would say. I practiced on carpet, linoleum and even in the ball pit. The latter was the most fun. Although I quickly mastered catching myself when falling on purpose, placing my arms out in front of me was hard to remember in midst of timbering to the ground. In fact, when I was around 7 years old, my mom made three separate trips to the emergency room with me. I had a mild concussion and a busted chin on one occasion and busted-out teeth on the two other trips.

These injuries proved to be enough of a shock for me to remember how to fall, but getting back up was a lesson I resented. My physical therapists taught me how to get up correctly, too. If I pushed up from the ground with both hands from a hunched position, I often lurched forward and just fell again. Obviously, this was the wrong way.

The correct way is to kneel and with the opposite hand pushing down on the knee to allow momentum to get into a standing position. I remember kneeling on one knee at a peg board, pushing plastic pegs into the board. Every time I lost my balance, I had to remove all of the plastic pegs and start over. When my PT wasn’t looking, I often shoved as many pegs in the board as I could before they looked in my direction. I hated those pegs. I hated that blank peg board. Many times, I threw those pegs at the wall in frustration because they were just a reminder of how terrible my knees felt while grating into the cheap carpet and how long it would take to get them in because my balance was awful.

Eventually, I learned. I wasn’t graceful, but still, I learned. I have joked with my friends who have cerebral palsy that we don’t just try to fall and get back up correctly, we fall with style. Often times, when other people see someone fall, they react in two ways: with laughter or with horrified stares before seeing if the person is OK. To stave off the inevitable embarrassment, I often joke about my clumsy feet or strike a pose Vogue-style, especially if I know the witnesses to my “downfall” well enough.

The cliché that friends are there to catch you when you fall takes on a literal meaning for me. My friends are the best and have lent me shoulders and hands to steady myself enough to be upright once more. Falling is inevitable for everyone, whether metaphorical or literal, but I have learned that how one falls is better to consider than trying not to fall at all.

Hailey Hughes the mighty

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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 am a special needs parent.

I know people don’t like that term. I know the politically correct phrase is “I am a parent of a child with special needs.”

But I’m not a typical parent. I have special needs myself due to the amount of special needs my children have.

I’m not ever going to be able to meet you for a coffee because you’re passing near where we live. That, my dear friend, isn’t something I can do without at least a week’s notice.

I need notice. Lots of notice.

I’m not going to meet you and your children in a playground because it happens to be five minutes away from my home.

We can’t do crowded.

I’m certainly unable to attend your child’s christening, birthday party and communion with all my children. That just isn’t possible. It doesn’t help when I’m asked repeatedly why I don’t have all of my boys with me. This doesn’t make me want to attend these very important events in your life. Trust me, I carry enough guilt with everyone sitting in the church wondering where my son, Ethan, is.

Asking me to come to your house with the boys for a visit won’t happen unless I’ve got my husband, David, with me or my super super gal pal, A. And if we do go, don’t cook and clean. We’ll be gone after one cup of tea, assuming you’ve locked your doors. Otherwise, we’ll be gone sooner.

You’re more than welcome to come to my place. Believe me, that’s easier for everyone, especially you.

I can’t do beaches, hikes, parks, play centers, zoos and circuses anywhere near peak time, peak season or peak anything, really.

Doctors visits are a must and I can barely do them!

What I can do is early (very early) morning visits, off-season visits, cloudy wet day visits to the parks, beaches and zoos. Never fairs or circuses. Ever.

Typical parents might not have these issues.

I’m not referring to my child when I say I am a special needs parent — I’m referring to myself.

I am a special needs parent. In order for my whole family to go anywhere together, there must be a plan. Circumstances must be right. We have to pre-visit before we visit. There are an awful lot of “extra” or “special” requirements that parents of children with special needs must do before we can even think about going.

I am a special needs parent.

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My oldest son, Jeshua, is 14 and has special needs. He was born prematurely, had chronic lung disease and had a G-tube placement at the age of 1 and a half. He’s been through countless surgeries and procedures in his first few years. When he was 4, we discovered he has cerebral palsy.

For years, Jeshua has always been the object of someone’s attention. From the time he started using a walker, everywhere we went people (children mostly) would stop what they were doing just to stare. I hated it, but I knew that they (the children, that is) didn’t know any better. I don’t know what intrigued or scared them most: the disfigurement of his legs or the grunts coming from his mouth.

His first day of school was just the same. I remember when I took him to the first school he attended after leaving Early Intervention, I was so nervous but excited. We walked into the building; I could hear the children chattering in the hall. When I opened the door to let in Jeshua, the hall got extremely quiet. I swear you could hear a pin drop. We walked about five doors down to his class; no one said a word until he entered his room. That was the longest walk of my life! And that went on just about every day that entire school year.

Now he’s 14 and had orthopedic surgery last year. He still gets those stares and children halting in their tracks when they see him coming. It bugs me because I don’t want people staring at him like that. To me, Jeshua is just like any other child. The only difference is he needs some assistance to walk and he talks with his hands.

I wish people who stop and stare knew automatically he was a child with special needs, but I know only I can tell them that. Would they understand? Maybe some would and others would not. I wish I could tell them, “Please don’t look at my child like he’s a monster. He looks just like any other child. He likes to play and laugh, like other children. He just needs extra attention.”

The thing I love most about my son is his laugh; it comes straight from his belly. Whether he’s laughing at something or somebody being silly, you can’t help but laugh with him. He has a love for trains and he watches “Thomas & Friends” as often as he can.  He gets so excited watching the trains crash. He also has a little brother, Jabari, who helps him with his milestone moments. Since Jabari has started learning things himself, Jeshua has been learning those things, too. Just recently he has learned how to button his pants. He’s learned how to put his shoes on, zip his coat and open packaged foods like, cookies, chips, crackers, etc.

When people look at him, I wish they could see the normalcy of his life. I wish they understood when he yells out, it’s more of a reflex than an attention-getter. Some of his grunts and groans are actually words he’s trying to pronounce. When he walks, I wish they realized it’s not one of those “Bless his heart” moments. There’s no reason to feel sorry for us. His condition is not fatal, it’s permanent, and we all have lived with it since his diagnoses and will continue to do so.

Now that he’s able to stand on his feet, I do take him out more, and it’s a lot easier for him to get around. I have to tell myself, “Don’t allow your hang-ups about people cause you to isolate your son from being a child. He doesn’t care who’s looking, so why should you?”

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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About two months ago, I was getting my regular blood test since I have rheumatoid arthritis (RA). It was busy on this particular day, so I struck up a conversation with the woman sitting next to me to pass the time.

I noticed she had exercise gear on so I asked her what she does to stay fit. We chatted about the gym and the exercises we each do.

She then asked me why I’m having blood tests done (I saw her eyeing the ankle brace on my left leg.) I told her I have rheumatoid arthritis and explained briefly what it is. This was her response: “Rather than going to the gym, you’d be better off killing yourself. That’s what I’d do. I’d kill myself if I had what you have.” I’m normally quick off the mark with comebacks, but I was so shocked I couldn’t respond.

While I might not have been able to respond at the time, I decided to even out the universe with some good karma, particularly since those same blood tests showed for the first time in two years my RA was in remission!

After a lot of thought, I decided to do some fundraising for rheumatoid arthritis research. Less than a month from now, I’ll be participating in a 226-kilometer team indoor Ironman challenge, which includes a 4-kilometer row, 180 kilometers on an exercise bike and 42 kilometers on a cross trainer.

I can’t do a traditional Ironman event because of my joint pain, but that’s kind of the point. How I do something in life may not look the same as the next person, but my life certainly has value, and there’s a lot I can contribute to the world. Unfortunately, there will always be people in the world who will be quick to judge, but I’m proud I took the opportunity to turn hate into hope.

Alana Schuurs the mighty

Words matter. Please be careful when using suicide-related language. And if you or someone you know needs help, please visit the National Suicide Prevention Lifeline. Head here for a list of crisis centers around the world.

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