When possibility becomes probability, then certainty-barring-a-freak-accident, you spend a lot of time thinking about your greatest fear.

Last week I posted a conversation my daughter, Julianna, and I had about heaven. Sharing something so deeply personal doesn’t come naturally. That conversation took my breath away, and I felt like I had to share it. I’m grateful to those who expressed their good wishes and admiration for our Julianna. Others found my questions “leading” and questioned the value I place on life. I’ll admit, those few comments hurt. Like any mother, my biggest vulnerability is my children. Children are supposed to outlive their parents.

I realize that the idea of not doing “everything” to prolong the life of a young child is perhaps unacceptable to some. But when your child’s illness is terminal, when the disease takes more and more and the treatments become riskier and offer less return, there are choices. The choices seem impossible, and they’re painful. We believe that sometimes it’s an act of love not to do “everything” to extend life and focus instead on giving your child the most beautiful life possible for as long as you’re allowed.

Julianna has severe neuromuscular disease. Problems with swallowing and breathing are things that kill people with neuromuscular disease, and Julianna started showing signs of these issues before she turned 1. She had three separate PICU admissions (63 days total) for respiratory failure in 2014. It was our annus horribilis.

The mainstay of her hospital treatment was aggressive “pulmonary toilet.” This is a multi-step, uncomfortable procedure, and involves naso-tracheal (NT) suction. The respiratory therapists (RTs) placed a catheter in her nose and guided it back into the throat. They tried to make Julianna open up her glottis by coughing, then they accessed the first part of her trachea and got the stuff she’s too weak to cough out on her own. It was torture for Julianna. Too weak to produce sound, she would cry silently — but she endured it again and again. The treatments took about an hour and were done every four hours around the clock or sometimes more frequently. Our Julianna was valiant and did everything that we asked her to do. The RTs were amazed by her courage. I knew that part of the reason she complied so well was because she was too weak to do otherwise. It is an exquisite form of torture, not being able to trade places with our children when they’re in such pain.

Julianna used to be able to walk short distances in a walker and use her BiPAP (noninvasive ventilation) only at night. By the end of the third hospitalization, she had difficulty sitting up even with support and could only come off of BiPAP for a few hours at a time. During this third hospitalization, we discussed her code status, met with the palliative care team and had a care conference. No one could give us a timeline, but everyone agreed that, at one point, the BiPAP would not be enough. The next step would be tracheotomy and ventilator dependence. I can’t get into the agony of contemplating this question in this space. Though we didn’t need to make a decision immediately, my husband and I agreed that it would probably not be the right choice for Julianna.

The palliative care team talked to us about hospice. We learned that hospice is not just comfort care, and it could be revoked at any time. This last part was very important to me. If Julianna got sick again, we planned to go straight back to the PICU. The treatments were agonizing, but maybe it would give us more time with her.

When I met with the hospice nurse, I emphasized the fact that we wanted to go the hospital if Julianna got sick again. She nodded and said that we could do this. I told her that I couldn’t let Julianna die at home — it was too scary. She nodded again and said that many people who enroll in hospice start out that way but later change their minds. Part of the process, she said, was “becoming comfortable with the uncomfortable.” I didn’t really buy it, but I liked the fact that she understood our concerns. She also told us she was available to us 24/7 if we had problems with Julianna. She would come over if needed. We decided to give it a try.

Hospice gave us many immediate benefits. We have almost instant access to medical advice via our hospice nurse. Twice a week, an aide comes to give Julianna a bath. A bereavement counselor meets with Julianna and our 6-year-old son, Alex. We had no idea how to start preparing Alex for the inevitable. The counselors helped us start the conversation. We also got paired with a volunteer. Our hospice angel visits Julianna every Saturday morning. She gives her four solid, continuous hours of playing and talking and singing and reading. One of the hardest things about Julianna’s disease is the isolation. Our daughter loves people and wants to make them happy. This team of hospice helpers has helped expand Julianna’s world — more people to love and give love.

MIchelle's daughter outside in wheelchair with brother

Julianna’s medical routine hasn’t really changed. We still do her respiratory treatments, give the same medications and maintain the same feeding schedule.  Her disease has continued to progress. When we started hospice in November 2014, she could come off BiPAP for about two hours at a time. She is now completely BiPAP dependent. She has also lost almost all use of her arms. It’s painful to witness the regression of your child,  but now my focus is different. I am no longer consumed by doing everything I can to work against Julianna’s disease. It is easier to give her my undivided attention and just enjoy her. I think that Julianna senses this, and it has helped her thrive.

It has also started some difficult but amazing conversations. Most of these take place as I’m sitting by her bed at night, waiting for her to fall asleep. Julianna talks about the hospital — a lot. Usually about how much she hates it. I tried to remind her of all the wonderful people who helped her. We hate all the NT and pokes too — but they killed the germs and let her come home, so didn’t that make it OK? We had this conversation many, many times. Julianna wouldn’t say anything,  One night in early February, she finally answered. She said “no.” And then she started talking about heaven.*

Tears started rolling down my face, and I was glad that the room was dark. We had taught Julianna our belief that there is a better place for her. In heaven, she will be able to walk, jump and play. She will not need machines to help her breathe, and she will be able to eat real food. There will be no hospitals. Very clearly, my 4-year-old daughter was telling me that getting more time at home with her family was not worth the pain of going to the hospital again. I made sure she understood that going to heaven meant dying and leaving this Earth. And I told her that it also meant leaving her family for a while, but we would join her later. Did she still want to skip the hospital and go to heaven? She did.

The next day, I talked to my husband, Steve. More tears as we rethought our choices. Between us, I was always more adamant about going back to the hospital. I had a deep fear of bringing the pain of the PICU to our home, but we both felt that we had to honor Julianna’s wishes. We agreed that we would continue to talk to her about this. If she changed her mind, so be it. Our plans became plans “for now.”

We then talked to our hospice nurse. Julianna’s wishes were too clear to ignore — but how much can she really understand at age 4? Do kids who are at the end of their lives know what’s coming? How would we make sure Julianna wasn’t in pain at home? Our nurse cried with us and told us she believed children with terminal illnesses do understand death. They may not understand everything about it, but who really does? She told us about other children in hospice who talked about seeing angels in the days before they passed. She went through the most likely scenarios, and what could be done to make it as easy as possible.

We have had more conversations, mostly initiated by Julianna. She’s scared of dying, but has, to me,  demonstrated adequate knowledge of what death is. (J: “When you die, you don’t do anything. You don’t think.”) She hasn’t changed her mind about going back to the hospital, and she knows that this means she’ll go to heaven by herself. If she gets sick, we’ll ask her again, and we’ll honor her wishes.

During that last hospitalization, the PICU team asked for a psych consult — standard procedure for kids with multiple hospital admissions. They found Julianna to be well-adjusted and happy. She knew her situation but was OK because she felt safe and loved. It was really her parents who needed the help. I talked to them about some of the impossible decisions we faced. Was hospice an attractive option because I was so, so tired? Was I thinking of it as an easy way to end all of our pain?

The psychologist looked into my tear-filled eyes and said with sadness, “There will be pain with whatever way you choose.”

Our months in hospice have been stable and wonderful. We’ve been given a second chance to enjoy our Julianna. I’m still scared of what is to come and can’t really imagine life without my baby girl. I know that this won’t last forever, but I’m grateful for the time we have now.

Michelle's daughter smiling with oxygen

*Author’s note: While going through e-mails in preparation for Julianna’s blog, I discovered that our very first conversation about heaven was actually recorded. I regret that this part of my story was inaccurate, but I am very happy to have Julianna’s words. She was clear and unequivocal. You can find the first conversation here.

RELATED: My Daughter Wants to Choose Heaven Over the Hospital


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

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 to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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 to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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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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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.

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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