julianna

My Daughter Wants to Choose Heaven Over the Hospital

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Our daughter, Julianna, is a funny, smart and beautiful 4-year-old who happens to have a severe neuromuscular disease.

In 2014, we had three PICU admissions for respiratory failure. She endured countless procedures and spent weeks at a time trying just to breathe. She got weaker with each admission. Eighteen months ago, she could walk with a walker. Today, she has a hard time sitting up and requires BiPAP (noninvasive ventilation) around the clock.

Last fall, we made the difficult decision to enroll in hospice. It didn’t feel right, but we were told that we could revoke it at any time. The plan was to try it out, get more support at home and go to the hospital again if she got sick.

A few months after we started hospice, Julianna made it clear to us that she does not want to go to the hospital again. Like so many kids who have had to face life-threatening illness, she is wise beyond her years — but she is still only 4 years old. I do not think that she will survive another illness, especially without aggressive intervention.

Julianna understands this too. We have had some remarkable, uncomfortable, humbling conversations about heaven.

Last month, it was this:

Julianna: Mom, do you want me to get a shot?

Me: It depends. If you need the shot…

J: Do you want me to go the hospital and get a shot?

M: You don’t want to go to the hospital, right, J?

J:  I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital].

M: I know. So if you get sick again, you want to stay home?

J:  I hate NT. I hate the hospital.

M: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?

J: (nods)

M: And it probably means that you will go to heaven by yourself, and Mommy will join you later.

J: But I won’t be alone.

M: That’s right. You will not be alone.

J: Do some people go to heaven soon?

M: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.

J: Will Alex [her 6-year-old brother] go to heaven with me?

M: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?

J: No, heaven is good. But I don’t like dying.

M: I know. That’s the hard part. We don’t have to be afraid of dying because we believe we go to heaven. But it’s sad because I will miss you so much.

J: Don’t worry, I won’t be alone.

M: I know. I love you.

J: Madly.

M: Yes, I love you madly. I’m so lucky.

J: And I’m so lucky.

M: Why?

J: Because you love me madly.

juliana in a princess costume

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My Disease Wants to Bring Me Down, But I’m Going to Crush Life

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Dear Charcot-Marie-Tooth Disease,

Go f*ck yourself.

It sucks waking up every morning wondering how much muscle you killed in the middle of the night.

That’s if I got up in the first place. Because you woke me up every 30 minutes with uncomfortable numbness and excruciating nerve pain every night for the past 10 years.

I’m exhausted.

You’ve got me in a lot of trouble. I’m late to work every day. Every single day. I hate it. My boss hates it. My colleagues hate it. And trust me, I hate it, too.

But I wish they understood what it’s like living with this disease.

I hate having to get up extra early to train my muscles extensively to try and save as much of them as I can — because I don’t want to rely on a wheelchair later on in life.

I hate leaving work every week in the middle of the afternoon for long doctor’s appointments.

I’m pissed that in the last two years, I’ve broke three bones, on three separate occasions, in my hand, feet and legs, because the muscles you killed aren’t there to protect them like they should.

Those breaks left me sidelined and unable to do the things I love, like working out or doing CrossFit — which is another battle against you.

And then I miss more work. And everyone (again) thinks I’m full of shit.

Because let’s be honest, you’re good at hiding yourself. No one can see you. Only I can. I hate you for that.

To my boss and colleagues: these aren’t perks like you think they are. I long for the day to not miss half my workday because of a doctor’s appointment. And the nights I don’t have to spend playing catch-up.

I’d love it if the pharmacist and his entire staff didn’t know me by name.

Your disease in my body affects those closest to me. Like on Saturday afternoons, when my schedule is wide open and my daughter Ella just wants to go, go, go. But I can’t walk another step because my feet and legs are tired and in so much pain. I just want to sleep. But I get up anyway. I won’t let her see that weakness. You won’t win.

You cost me a lot of money, too. The debt keeps climbing. A thousand here, two thousand there. I make enough money to live comfortably, but you’re making it really difficult with all these prescriptions, tests, medical equipment, and doctor’s appointments.

Enough is enough.

But despite all the things you do that really piss me off, you’ve changed my perspective.

I live more spontaneously than anyone you’ll ever meet.

I make my own rules. I’m not sure if it’s because you already give me too many, or if it’s because the ones most people make are bullshit, and life is too short to be crippled by unnecessary red tape and dated ideals.

I have a lot of fun. I don’t live off of a script like most people in this world. I think, and I do, differently.

I truly grasp that life is too short. Who knows, you may win, and I may not walk when I’m 50 years old. But in the meantime, I’m going to crush life. I will beat you down. And I won’t let you control me anymore.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected]  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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These Rare Diseases Will Never Get My Sons’ Hearts

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Dear Infamous Pelizaeus-Merzbacher Disease and Fibrous Dysplasia,

I need to get it out of my system. I detest you. Yes, both of you.

I came to know you two years ago, and since then, you have made my life, and that of my family, a nightmare. I know I cannot wish you away, and the more I know you, the more I realize you are here to stay. Nonetheless, expect me to fight you with all my strength for every smile you steal away from my children, every moment of happiness you ransack from their hearts, and every second you force us to spend in hospitals, doctor appointments, and therapies rather than enjoying the thrill of a bicycle ride, a walk on the pier, or a vacation on a sandy beach.

The fact that you went after two of my children makes me abhor you even more. Both of you appeared one after the other as if you were invited to a party. Well, you have pooped all over my children’s party. I would have preferred you had surfaced only on me.

Fibrous Dysplasia, you have already caused a limp on my 6-year-old, a broken femur, a surgery to install an intramedullary rod (a surgery that repeats every few years until he finishes growing up)…

All the while, you have been eating away his other femur, and he is in need of another surgery in the next few months. This will continue all his life. You must feel proud of yourself.

You are in most of his legs and arms, and I am left wondering for his future. Lately, he has been waking up not wanting to go to school because his legs hurt. Though he soon realizes the fun he has at school and makes the effort to go. I carry him through the corridors to minimize his walking, and he appreciates it with an “I love you, Dad.”

He wants to be a scientist and an American Ninja Warrior. I will not crush his dream, hence I will encourage swimming to keep him active. You have rendered me incompetent to help him get rid of you, so we will work around you.

I had put a formal request to the doctors to take away my bones and give them to my child… sadly, that is not even an option. You are as much part of him as my own DNA.  In the spirit of Christina Schulz’s letter to her rare bone disease, “You may take his legs, but you will never get his heart.”

Pelizaeus-Merzbacher Disease, you have come after my newborn. You showed up with your symptomatic friends: auditory neuropathy, nystagmus, and hypotonia, just to keep me on my toes researching like mad.

My son has been prickled and poked so many times I lost count. You have hid away through generations, but I finally brought you out into the open. My son will be your last stop in this family.

I found you through the Mary Poppins’ bag of rare diseases. You are a leukodystrophy that affects his central nervous system. You do not let his myelin generate properly. Yes, I know who you are. You will not allow him to sit, crawl, walk, or talk. You will make him struggle to eat and breathe. You are despicable.

But as much as you want to bring down my son, he will fight you. He is Mighty. He will smile through every conquest. He will smile from the first light of dawn to the last crepuscular ray. At 2 years old, he applauds, and babbles “paz” (peace). He has found a way to drink water and eat eggs and ham. It is those small miracles you cannot take away. Those give me hope that maybe, just maybe, we will defeat you.

I promise you, he will live and not just survive.

The day you are both obliterated from this earth, I will sing praises. Children and parents should never have to meet you. You are not welcome.

I will end with one of my older son’s favorite bedtime stories, dedicated to both of you:

Go Away Big Green Monster, by Ed Emberley

Big green monster has two big yellow eyes,

A long bluish-greenish nose,

A big red mouth with sharp white teeth,

Two little squiggly ears,

Scraggly purple hair,

And a big scary green face.

But, you don’t scare me!

So go away, Scraggly purple hair,

Go away Two little squiggly ears,

Go away long bluish-greenish nose,

Go away big green face,

Go away big red mouth,

Go away sharp white teeth,

Go away two big yellow eyes,

Go away Big green monster.

And don’t come back, until I say so.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Our Favorite Actor Has a Message for World Down Syndrome Day

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1-sheet (FINAL 0211015) No one could pinpoint exactly why David DeSanctis was the clear choice to star in the upcoming film, “Where Hope Grows.”

There was just something about him. 

The 21-year-old from Louisville, Kentucky, has Down syndrome, and originally, producers and director Chris Dowling weren’t sure how his intellectual disability would affect his ability to act. Turns out, not at all. DeSanctis memorized more than 130 lines and taught nearly everyone he worked with a valuable lesson — don’t believe the stereotypes.

As he said in our Mighty World Down Syndrome Day video, “Can’t you see my abilities?”

“Where Hope Grows,” a film that follows the budding friendship between a former professional baseball player (Kristoffer Polaha) and a grocery store clerk (DeSanctis), will be released on May 15. But while DeSantcis was in Los Angeles, we caught up with him to learn why he finds awareness days like World Down Syndrome Day important.

David at grocery store - Produce Tom LeGoff 2013-3452-Edit-Edit Why is it necessary to have a day like World Down Syndrome Day?

It’s a day to look on our abilities instead of our disabilities. If you see a person with an intellectual disability like Down syndrome, maybe you can go up to them today and give them a handshake or a high five or a fist bump or even a hug. It could change their life in about one second.

[DeSanctis has pledged to hug strangers as part of an act of kindness campaign for World Down Syndrome Day.]

Raising awareness is important because it teaches everyone that we’re just normal people and we deserve to be treated that way. We’re just people.

What would you tell other actors with disabilities trying to break into the industry?

Follow your dreams. Never give up. Never say never. Push forward and go for it. And if an audition opportunity comes along and you don’t get picked, be brave. Just wait for another gig to try again.

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How I Felt a Day After My Son’s Epilepsy Diagnosis

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Dear epilepsy,

IMG_20150226_135013 I have to admit, your existence in my 11-year-old son’s sweet brain shook me to my core. You robbed me of my peace of mind for a day, though you linger every day. When we were introduced officially on March 18, 2015, my body went into fight-or-flight mode. I have dealt with so much with Peter’s sister, who happens to have Down Syndrome and autism. You just weren’t invited to this party.

I have to tell you, though, just a day later I felt like I could handle you. I’m ready to add you to my list. I’m ready to fight. You will not take my peace, ever. I know there will be days when your presence will seem too much to bear. I will take those days moments at a time.

I want you to know that I will not allow you to scare my son. He’s sweet yet tough. Like I said, I didn’t want you, I didn’t invite you, but for some reason you’re a part of my boy, who I love dearly, and so I accept you. But remember this: I will protect him. You will not control his life; you will not steal our peace. We will learn as much about you as we can. Oh, and by the way, I wish you would have picked a better time… but life on life’s terms. I will take you on and share all I can for epilepsy awareness.

Sincerely,
One determined mother who will always choose to fight.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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New York Islanders Prove Some Things Are More Important Than Rivalries

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Karen Richards woke up after brain surgery groggy, tired and surrounded by hockey players.

The 15-year-old from Boston is a diehard Bruins fan. But on Thursday, March 12, five members of the New York Islanders stood around her. Karen didn’t mind.

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Photo via Karen Richards

The teen lives with a roster of diagnoses including Ehlers-Danlos syndrome, complex regional pain syndrome (CRPS), craniocervical instability and gastroparesis. She’d recently transferred to North Shore-LIJ in Long Island, New York, to have a reservoir placed in her brain. When a few Islanders players, who’d been visiting the hospital, heard she was a huge hockey fan, they put team rivalries aside and paid Karen a visit.

“It was really nice that they came because sometimes the hospital can get dull. It’s a big, scary, loud place.”[Their visit] was something that made the hospital a little less scary and a little less cold and lonely,” Karen told The Mighty in an email. “I’ve really learned to appreciate the little things with my chronic illnesses, and the Islanders’ visit was definitely something that, although small for them, meant a lot for me.”

Hopefully, a meet-and-greet with her favorite Bruin players, Tuukka Rask and Zdeno Chára, will be in her future. For now, Karen works every day to remain as positive as possible while facing multiple conditions.

“It’s hard to give specific advice for this kind of thing. Each person really has to figure out their own ways of dealing with their illnesses in an effective way,” Karen told The Mighty. “My general advice would be, fight as hard as you can, and never let a disease steal away those special moments in your life.”

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