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?
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.
M: Yes, I love you madly. I’m so lucky.
J: And I’m so lucky.
J: Because you love me madly.
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