Why I’m here. 

It’s an odd feeling strolling into a children’s hospital and thinking… “Wow 5-1/2 years ago I never even thought about this place, never even step foot into this place. Not even once. Not to visit anyone, never.” Weird? Yes! That is the understatement of my life.
Kids just simply did not get sick in my world.
And, I’m using past tense very STRONGLY with that.
It was a place that used to seem so big, so confusing, so bright, just way different than all the movies, so much scarier.
This place I never knew of, is a second home now, it’s where I feel at home, oddly enough. It’s where I’ve spent months, days on end in, hundreds of days thinking I would never go home in, filled with people I’ve come to adore. I can’t be in the hospital for longer than 5 minutes without seeing someone I know. A patient, doctor, nurse, a visitor… It doesn’t really matter. They all know me, as I know them.
I see kids parents, patients I know. Parents I’ve seen roaming the halls, looking down at the cold bright tiled floors wishing, just wishing they were anywhere but there.

I go through these halls and I realize how accustomed to the babies crying, the blood curdling screams I’ve become. You hear it for the first time and you sob silently. Then you become, sort of numb.

When you circle the inpatient floors and you glance into each room, you can tell… You can see who is there WAY too often to say. They don’t wear hospital clothing, they’re comfy in their bed, watching TV. They aren’t scared. They know how it goes here. They’re alone a lot- unfortunately, because when your kid is chronically ill you can’t be with them 24/7. You just can’t, it’s impossible. But, you really don’t even have to. We know the nurses. We feel comfortable with them. It’s a good thing, but on the other hand, also very sad.

On TV, you think that a children’s hospital is filled with children with bald heads who laugh, smile and skip through the halls. You think it’s getting gifts, and attention. But… It’s really being forced to move in your sleep, forced to get your vitals taken, you’re forced to go to the bathroom, you’re forced to be poked with needles at 5am when you’re half asleep, in a haze, all for your own good, you throw up, you shake and you cry because you just simply hurt and want to be in your own bed.

You’re forced to eat, to drink, to breath deeper, to sit up, to move around, to describe everything you ate, what you drank, how you felt, and “1-10 what’s your pain?”

I’ve lied in my bed on the 6th floor and just kept my door open. For hours. I’m nosey and I’ll be the first to admit it. I close my eyes and hear the sounds, the sounds I have blasted in my head for life, sounds I can hear in my dreams. You hear distant beeping, you hear the nurses talking, talking on the phone, laughing with one another. You also sometimes see them running, that’s not usually good. You watch them be completely still, serene… Then bolt across the unit. You hear babies crying. You see kids strolling the halls. Just as a hospital should be. Quiet. Relaxing, almost. Then you hear “Code Blue, room 6–” and…

Oh… That’s why it’s quiet. All of the nurses are jam packed into one small room, saving a kids life. Right there. Right in front of you.
I’ve seen kids have seizures while I’ve passed their rooms and it felt like all the wind was hit out of me with a baseball bat. I’ve watched a 5-year-old boy turn blue and stop breathing and without any thought, I immediately went to move a little 4-year-old girl who was in the hallway with me so she wouldn’t see. She shouldn’t see that, but here, I was, only 15. I shouldn’t have either.

I’ve straight up heard parents sobbing in the middle of the hallway, sitting on the ground, covering their wet, hot face with shaky hands, and yes, sometimes it was MY parents and my family too.

They look at their child everyday and they smile, they hold in the tears and as soon as they turn around to leave, they lose it.
Then I remember, I’ve also seen such genuine happiness, the sound of clapping because someone was going home… Home!! after long, hard months of being confined to a hospital room that feels so small once you’re in it for so long.
I’ve seen such positivity where you’d think you would see the opposite. I’ve hugged 3-year-olds and laughed with girls and boys my own age.
I’ve hugged my nurses who are more like my friends, to nights I couldn’t sleep and they let me vent and I’ve thanked my doctors who tell me “no need to thank me, it’s what we do.”

I’ve laughed strolling the halls and I’ve watched snow flakes fall from the windows, I’ve done photoshoots and cried at romantic movies with my night nurses. I’ve built crafts with my nurses while they also did charting, I’ve sang the Full House theme song and Moanas “How Far I’ll Go” so loudly, and I’ve gotten gifts from people who work to save us, who never ask for anything in return, I’ve held hands with nursing students and taught them all about how it is to be the patient. I’ve baked cupcakes with my physical therapist, my physical therapist would bake amazing sweets each week and always saved me one and I’ve had hour long heart to hearts with doctors. My orthopedic surgeon has brought me donuts because he knew I loved them and we thought it was funny. All of my doctors, PA’s and APRNs HAVE and will do anything to make my day just a little better.

Anesthesiologist have held my hands in pre-op because they knew I was afraid and felt all alone. I’ve joked and laughed right before I’m sedated for surgery with residents.

PCA’s have spent hours washing my hair and getting huge knots out, from lying in bed for weeks straight and they even laugh so hard with me watching reality television each night.

It’s not all bad. It’s not all screaming and sadness. I promise you. It’s true selfless love for one another. It’s where I’ve seen how much complete strangers can care about you. It’s tight hugs and wishes of good luck. It’s where kids are saved and where sometimes, sadly they aren’t/can’t be.

But that’s what makes this small hospital have such a strong, close bond.

From the security guards and people working at the desks, to the kitchen staff who would do anything to make sure I was eating, to the nurses who braid your hair after you just got throw up all throughout it, to my favorite child life specialist who I can laugh with for hours, to my Hole in the wall gang camp friends.

It is home. My heart is with Connecticut Children’s Medical Center.
Why? Why do I love a hospital, you may ask? It’s a relevant question for sure.
It’s because, of all the times I could have died or could’ve crashed and didn’t. Because, doctors have fought tooth and nail for me, my life and most importantly the quality of it. It’s because when I asked one of my favorite nurses “am I going to die?” when I was in adrenal failure (addisonian crisis) and she looked at me with the deepest of sorrows and said “not on my watch, not today!!” And to just recently having rapid responses way too often, but I knew I was going to be okay because my nurses who know me better than I know myself would never let anything happen to me, if it was up to them. Watching them care SO much, try so hard, taught me…. from that day on?

I learned, I realized that, that is what I want to do. I want to look deep into scared faces and tell them it’s okay. I want to hug happy families and I want to squeeze sad ones. I want to share the burning love I have for something more than myself.
Because of doctors and nurses and modern medicine, I’m alive. Without that, I simply wouldn’t be. And, I truly want to be the future of that. In the last 5-1/2 years of being sick I have learned and I have witnessed with my own two eyes that the best way to find yourself is to lose yourself in the service of others. The amazing people at Connecticut Children’s Medical Center show me everyday that your greatness is NOT what you have, it’s what you GIVE.


16 thoughts on “Why I’m here. 

Add yours

  1. Very inspirational post. I am so sorry you have to deal with these things, but your attitude is amazing and so inspiring. Looking forward to reading more of your posts. Wish you the best – speak766

  2. Dear Alex—-amazing—thanks for sharing this—my 23 year old daughter suffered a birth injury—we have spent weeks at Shriner’s Children’s Hospital in Philadelphia—-so, we kind of understand what you have just shared with us—you are an amazing young Lady—God bless—Louise Nadeau Beaulieu—Madawaska—your Memere Geneve knows who I am—I used to work at Rosette’s—

  3. Alex,
    You are amazing! I can completely relate to everything you said! I feel much the same. Though i hardly ever share anything. Ive cried sad tears and cried happy ones. Wednesday is the first of 3 surgeries i will have in about a month. (Last on Sept. 27) Im scared as always. I dont think it ever gets easier. Ive had TM 21 yrs. Thank you so much for sharing!! Love reading your blog! Much love sent your way! Xxxx

  4. What an incredible journey it’s been. I’m so happy you’re out and about again living life the way you should. Through all the trials and set backs, you’ve handled it all with grace and perseverance. So anything that comes your way now is met with strength and determination. You got it all kid and through all this , now have a better understanding and appreciation for life than more adults I know. I see only great things to come for you. Keep pushing! XO

  5. There are simply no words for the impression you leave on people Alex.. You are beautiful, wise beyond your years, courageous, intelligent, a superhero. You see the meaning of life and the glory. You appreciate the world and people in a way most people will never be able to. But most importantly, you keep us all remembering what strength and grace looks like. I admire every moment of your strength and pray for you in every moment of struggle. Keep making the world smile Alex. Xoxo

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