The Mom’s Guide to Being a Frequent Visitor at a Children’s Hospital

Disclaimer: During an emergency, the only thing you need is to remember to breathe. Going to the hospital will never become pleasant, but there are some things you can do before, during and after your stay to make things a little easier. 


Keep a hospital bag ready to go; don’t wait for an emergency to pack a bag. I have done that before and when I got to the hospital, I had a bunch of random stuff in the bag. I ended up having to use the strap for my heart rate monitor as a hair tie.

Here’s what’s in my bag:

  • List of my daughter’s medications and doctors
  • Set of clothes for my daughter and myself
  • The best hand cream money can buy because after using the hospital soap to wash your hands 100 times a day, your skin can fall off
  • Something comfortable to wear at night. Let’s discuss this nighttime clothing a little further: walking down the hall in a sexy silky nightgown is not acceptable in a children’s hospital. It is important for you to be comfortable, but keep in mind the people from the lab like to come in at 4 a.m. and turn on all the lights.
  • Socks
  • Toiletries
  • Underwear (this is where you can be as sexy as you want to be)
  • I keep a set of workout clothes in the bag and always grab my sneakers on the way out
  • Earplugs
  • Eye mask

Have a plan: Who is going to take care of your other kids? Are you going to stay at the hospital with your child every night or is there someone else who can give you a break?

Make a list of things you can grab before leaving the house, such as a phone charger, cash, and other things that you don’t store in the hospital bag.


Respect the nurses.

Sometimes parents get confused and think the nurses at the hospital are there to take care of the parents. No, they are supposed to be taking care of your child. Don’t complain to them about the wait time, the food, insurance company and anything else that has nothing to do with the direct care your child is getting at the present moment.

marjan holbrook the mighty

I have a lot of bad memories of my daughter being in PICU, but I laugh when I think about some of the nurses. I will never forget the nurse who let me sneak out late one night just so I could buy a box of Peppermint Joe Joes.

Don’t make major decisions.

The following things are some of the things I have thought about doing or have done while my daughter was hospitalized:

  • Cutting my long hair super short
  • Converting to Judaism
  • Moving to another state
  • De-friending all of my in-laws
  • Picking out a name for my unborn daughter …

A lot of things can be undone, but just to be on the safe side, wait until you are out of the hospital.

Keep yourself busy during the day.

Welcome visitors, but set limits. Know when you are too tired and need down time. Try to get out of the hospital one hour a day. This is hard to do, but it’s important to step away and have an hour outside the jail… I mean, hospital.

Instead of sitting in a chair, watching TV and eating junk, try to go outside and get some fresh air. Yes, you are there for your child, but remember: you have to stay mentally and physically strong in order to be a good caregiver.

Have a routine.

The hospital has its own schedule: the lab people coming around to annoy you at the crack of dawn, the nurses changing shifts, the important specialist walking around asking if you want them to check your kid out (and then billing the insurance company $$$ just so you can hear them say, “Follow-up with her regular doctor when you leave”), the food trays being brought to the rooms… you get the picture.

Here is my routine:

  1. Open my eyes, make sure I am wearing pants and start searching for a cup of coffee
  2. Breakfast for my daughter (if she can eat)
  3. Eat my own breakfast, drink more coffee, call and check on my other daughter
  4. Call my husband and remind him of what a sacrifice it is to sleep on the bed/couch thing
  5. Figure out who is coming to stay for an hour so I can sneak out
  6. Read, visitors, lunch, workout, shower, more visitors, dinner, TV, read, get my daughter ready for night time, get myself ready for bed, read
  7. Call my husband and remind him what a sacrifice it is to be sleeping on the bed/sofa thing
  8. Ear plugs, melatonin, eye mask, sleep until the lab people come and wake us up


It’s important to rest and get used to your new normal before getting back into a busy schedule. In the hospital, we are so worried about our child that we don’t have the time to properly process what is going on.

marjan holbrook the mighty

The way we handle extreme stress is different for every person. My husband loses his cool during an emergency, but once it’s over, he does not think about it anymore. I stay calm during the storm, and insist on staying in the trauma room when they are working on my daughter. When we get home, it’s a different story. Once I have the chance to process what we went through, the sadness and the anxiety takes over.

Several years ago, a doctor explained PTSS to me. I asked her if she was telling me all of this because she knew I grew up in a developing country during a revolution and a war. She said no, it’s because your daughter was close to dying last month. That put things into perspective for me. All the stress I had experienced previous to my daughter’s illness was nothing compared to the scared look in her eyes when she was hospitalized.

Depression, anxiety and PTSS are real, but it does not mean you have to live with it daily. You can learn to recognize when you need help and stop and ask for help. Make a list of things that help you heal and look at that list when you are getting close to your breaking point. My list: praying, Texting or talking to (insert name of a VIP). The comfort of my forehead resting on my yoga mat. The burst energy I feel when my hands are on the rough part of the barbell. Breathing after a long run.

When I get home, I get into a routine: rest, write thank you notes, write down the things I learned and what I can improve for next time, do something special with my other child, and remind my husband what a sacrifice it was to sleep on the bed/sofa thing.

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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My Brother’s Diagnosis Made Me More Than Just His Sister

I’ve known autism now for over 20 years, and saying it’s been an emotional rollercoaster does not do justice. You have to live through it to understand the ride.

My most vivid and earliest childhood memory was being in a doctor’s office (light blue walls, big brown desk, white coat), which I later realized was where my brother was diagnosed. Then I remember my mom holding my brother in his arms, and my dad holding my mom while walking down the black, metal staircase. I think I was walking alone on the steps, but not too far away.

And that’s how I’ve felt for so long — I always felt like I was trying to walking solo, on my own path, but not too far away from my family. I became a second mother, a third parent to my brother. Little did I know, there were many others on this similar path; it took me over 10 years to find my first “Sibs-friends.” And — I hope I am able to speak on their behalf — we all feel the same way: it’s tough, but we love our siblings just the way they are. We acknowledge that we wouldn’t be who we are today if it weren’t for autism.

brother with autism the mighty

So I will wrap this up with tears of mixed emotions and a letter that I wish my brother could understand, not today, but maybe in the future:

To my dear brother,

Your world of autism seems so simple. You live day by day to fulfill the little joys you need (expected favorite meals, favorite toys, scheduled events) and have so much love and care around you. Yet, you struggle with your lack of independence and the looming presence of seizures each day.

I’ve watched you grow, and it was not easy. From the days you would throw tantrums in our favorite arcade to when you first discovered puberty and seizures, to our first time alone for an extended period without parents… I’ve been there. I’ve been there to play with you, cook your meals and brush your teeth.

Because of your autism, I am a product of arrested development, discovered bits of parenting before I turned double-digits in age, and a constant worrier. It affects me in ways that I have yet been able to describe completely.

Yet, thanks to your autism, I am who I am today. I discovered a career that I am passionate about, and have met wonderful people who are just as understanding as I am about the importance of communication. Because of your struggles to tell our family about your interests, your daily memories and your immediate needs, I wanted to help ease that pain for other families.

I am a person who will give a piece of her heart to everyone who needs it, and let my love and care bleed out until I have nothing left for me. For better or for worse.

And for that, I am forever grateful. I believe in things happening for a reason,  mainly because of you, my sweet brother. Thank you, “Brat,” from the bottom of my heart. Thank you, autism, for the tough moments and the blessings.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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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This Dad Knows What It Means To Be a Modern-Day Autism Advocate

Billy Mann is the music producer behind your favorite songs. (Really.) But we’re not talking about what he’s doing for the face of music right now.

For Mann, the richness of life comes from so many things that aren’t about a hit song. As a father of four, Mann and his wife Gena have been actively involved in the autism community and raising awareness for the ABLE Act. Mann is a modern-day advocate in every sense of the word. Aside from taking part in big, important meetings on the Hill, he takes to Twitter to throw gems out into the Twitterverse and start important conversations.

Amid a busy start to Autism Awareness month, Mann recently answered three questions for The Mighty.

1. How has being a husband/father/artist/executive made you the advocate for autism awareness you are today? 

Having a child with special needs has made me a dad with special skills, and one is being inspired by my son to take action. He’s so brave and noble in his silence. Most people with typical kids don’t realize that it can take some children with autism years to learn to go to the bathroom by themselves, to use a fork, to hold a pencil. Most people don’t realize that when they see my son and they ask him how he’s doing, after 10 years of not responding, teaching, nurturing and therapy, now he says, “good” back to them. And being a coast-based creative executive out of New York where everyone is so important, in a rush, so special and almost-famous, I’ve learned to remember that everyone I meet has a story I don’t know about. The taxi driver. The doorman. The guy folding a straw over and over again while waiting in line at Starbucks… My son has made my listening and perception skills stronger and grown my compassion and sensitivity. But when I look at the fast increase in diagnosis, the NIH and CDC government numbers and studies and the impact autism can have on families and school districts, I cannot not act.  

2. How do you see media raising awareness for autism? 

In reality, the increase in media coverage of autism is a reflection of society, as it should be. Autism spectrum disorders have increased in the U.S. While the autism community is a diverse spectrum, the need for awareness, services, advocacy, resources to soften the harsh economic impact on school districts, local, state and federal governments, applies to everyone equally. Raising awareness is the first step towards right-sizing resources and inspiring understanding and acceptance.   

3. What are some defining characteristics of a modern day advocate? Have you seen social media make a difference?

I think that advocating in the social media world means seeing cyberspace as a kind of “Hyde Park” moment at all times. There are so many critical causes and needs and missions out there, and even while I’m focused on autism, I know in Hyde Park there are a lot of us at once. I’ve learned over the years to not just tweet my thoughts but also retweet and favorite and encourage others whose feelings and thoughts align with mine. Sort of like when James Brown screamed, “Yeah!” and then his whole band and the audience echoed back, “YEAH!” I think people who share causes are best when we grow the community through reaffirmation and positivity. 

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How My Brother Became an Inspiration to His Entire High School

Sometimes it takes kids like the ones who attend Huron High to restore a little bit of faith in the world. My brother, now attending high school, almost to the final stretch as a senior, has been part of a perfect example of this faith in humanity.

Growing up, you get to observe the way children interact with others who come across as “different.” I for one have experienced the taunting and teasing that comes with this disability. And when I say “disability,” what I really mean is “blessing.” Because that’s exactly what my brother with Down syndrome is: a blessing.

Max is an outgoing, lovable, companionable kid who grew up without judgment or bias toward anyone. His innocent mind made him all the more willing to approach anyone and everyone with a friendly gesture (usually by saying howdy).

Some children may have taken his extrovert personality the wrong way at times. Peers would recognize his physical differences and stare as if they were trying to figure out what was wrong. Some would take advantage of his innocence and tease him because they knew he would never tease back. The truth is, nothing was wrong with him and his heart of gold simply wasn’t capable of being rude to another peer.

Since then, Max and the children he grew up with have come a long way. The friends he has made over the years have only lifted him higher and encouraged him to be the best he can be. Max is a manager of the high school football team, jersey and all. The team has been incredible with making him feel at home and that he is of significant importance to the team as a whole.

He is also a manager of the middle school basketball team. Although these players are years younger than him, they know him just as well as those of his own age and make him feel like an essential part of the team.

Max competes in Winter Special Olympics skiing and has received gold medals over the past three years.

There is no way he would have reached his goal of this many medals if his best friends and classmates weren’t right there cheering on the sidelines each year.

Max was also nominated and chosen to be the Grand Marshal of our town’s local parade this past summer. Not only did his peers think this was a good idea, but the entire town.

Did I mention he is going to be a senior in high school? The only senior with Down syndrome to ever graduate from Huron High. There is no doubt in my mind he wouldn’t be where he is right now if his peers weren’t always right behind him pushing him to be the best he can be.

All of these people have made my brother feel so incredibly special through everyday actions. The way Max’s classmates have come together to support him has me at a loss for words.

I watch him interact in a more social way than he ever has before with his friends, and I cannot describe how grateful I am that he found such loyal people.

I cannot wait to see where life takes him and I cannot thank his classmates enough for helping him get to where he is now. Max has become a leader, an inspiration, and a friend to all, thanks to his astounding peers.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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 I Would Tell the Other Kids: A Note From a Special Needs Mom

special-needs-mom-note Several nights ago we took my son to the park just before dusk. It had been in the mid-60s out, nice weather for playing outside. My son, who is autistic, apraxic and who also has several other diagnoses, was having a blast following the other kids around and riding on the little merry-go-round.

Several times the other kids would ask him questions like, “What’s your name?” or “How old are you?” But in Adam’s excitement, he didn’t seem to hear or understand. He was happy to be running around and playing outdoors. Several times one of the other kids asked me what he was saying, and I had to interpret. The older he gets, the more we find ourselves trying to explain why he has difficulties talking.

Little kids don’t seem to understand. They will yell in his face over and over thinking that will get their questions answered or give him mean or weird looks because he’s different and in his own little world at times.

If I could sit them down and gently talk to each of them about my son, this is what I would say, this is what I would want them to know:

Dear Little Ones,

I know my son seems different, and I know he doesn’t talk as well as you do, but if you would be willing to give him a chance you would find that he’s the sweetest little boy you will ever know. He may seem to be hyper and excitable, but this is because he finds so much joy in the world around him.

If you would take the chance to get to know him, to slow down and try to understand him, you would love the few words he would have to say. Although you might not understand every word, he does understand you and loves to watch what you do. He absolutely loves other children and while he may come across a little rough around the edges, it’s really just his way of showing you he cares.

It may be annoying when he babbles the same few words over and over or when he copies everything you do, but he only does these things because he admires you. He learns from watching others and loves to do what they do too.

If you would only give my son a chance, he would make a great friend. He’s loyal and caring and truly loves the people around him. I hope you too will see him the way I do and decide that even though he may be a little different, he’s a great person to get to know better.


A Special Needs Mom

At times it’s hard to watch my son interact with others. Many do not understand him, and I worry that as he gets older, he will have an even harder time making friends.

I cannot always protect him from the hurts of this world and from others, but I can tell others about my son and hope one day they decide to give him a chance and see what an amazing little boy he truly is.

This post originally appeared on Singing Through the Rain.

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My Son Can’t Move His Body, but He’ll Move Mountains Someday

My son,

I held you in my arms a few minutes ago. I was contemplating the future and it is overwhelming. So I choose to exist here in this moment, and avoid visions of the impending scoliosis that your diagnosis, Pelizaeus-Merzbacher disease, dictates.

Pelizaeus-Merzbacher Disease the mighty

You are so small. Your spine is the length of my extended hand. I usually slightly press on it, hoping to counteract any imminent curves. It is foolish, I know. I am learning to feel every vertebrae with my fingertips, and I am thrilled when I feel the spaces in between, their straightness. “Does every parent do this?” I ask myself. As you started being restless, I left you on the corner of the couch with your favorite toy piano, and I feel the need to write you a letter.

My son…

I know you are tired of sitting down. Tired of being held. Tired of being put here or there. Though you are exhausted, the last thing you want is to lie down. Nonetheless, I still leave you on the same safe place where you won’t fall, and I hand you the same toys. Like an unfinished Minecraft game, your world seems finite. The exploration ends as far as your arms reach, as far as your inchworm crawls get you.

So from one person’s arms to the next you go. Like hitchhiking your way around. You have little control of where you end up. Sometimes I forget about you, and so you begin staring at the lights, at the ceiling, at the shutters, at your parents’ wedding picture in wonder. I am sure you have memorized every nook and cranny of our living room, our kitchen, our bedroom. If you were an architect, you could perfectly trace our home from memory.

Pelizaeus Merzbacher Disease the mighty

I am sorry, my son, for all those days I am busy. And for the ones that I am not busy, and I selfishly choose wrong. Sometimes my imagination freezes and numbs my every thought.

I have seen you stay in a sitting position for long periods of time. People walk by and not notice you as if another piece of furniture. But I see you from across the kitchen smiling as you play your little toy piano like a virtuoso. You pull the lever on the piano to change the music, and you have this accomplished grin on your face  Even though it may go unnoticed, you do not care. You know the effort it takes, and you relish in it. You try to clap your hands, but your left hand misses the right hand two out of three times. You celebrate every win. You are my hero.

I promise to make it up to you. I will make each and every day as special as you make mine. I will discover new songs with you, my Maestro. We will watch the stars and roam the Earth. We will cheer goals and touchdowns. We will dance and laugh.

And we will pray in appreciation, for forgiveness, for patience, for faith. Though you can’t move your body, you will help move mountains someday, little boy. You already have me on the move. I am coming for you. I hear your cries. Let’s go play. I love you.


Pelizaeus Merzbacher Disease the mighty

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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