We are coming to a strange anniversary.
One year ago, things fell apart. What happened next – a hospital-free year with Julianna – has been beautiful and unexpected.
These days, I try to live in the present. Frankly, there is a lot that I don’t want to remember. There’s something about anniversaries, though, that demands reflection.
I wrote this letter one year ago. Most of it is copied below (italics), with updates and commentary in blue.
This anniversary, we are celebrating how far we have come. We cannot take any of this for granted.
28 October 2014
You may or may not know that Julianna was hospitalized almost 3 weeks ago for another respiratory problem. She is better now and will come home tomorrow.
In 2014, Julianna spent 66 days in the hospital. This was her third PICU admission in ten months. We tried so hard to keep her out of the hospital, but it seemed like nothing was working.
It has been a really difficult year for us. We have been in survival mode for at least the last year and have thus been largely non-communicative – even with our closest friends and family. We need your support, though, so we wanted to start by letting you know what we are facing.
For a long time, we kept everything to ourselves. It was too painful to put our reality into words. This e-mail was one of our first attempts at letting others in.
Julianna turned 4 in August. She is a bright, kind, funny and amazing girl who happens to have an awful, debilitating neuromuscular disease. The worst part of her disease is that it affects her breathing and swallowing – these are the things that ultimately shorten lifespan in people with neuromuscular disease.
I recognized these signs before anyone else. It’s the double-edged sword of being a physician and mother. I struggled mightily against this knowledge. I told myself that I was being paranoid — maybe J wasn’t getting better because I was too pessimistic. It was easier to blame myself than to admit that J’s disease was really, really bad.
We have come to the awful realization that Julianna will not live as long as we want.
It was devastating, getting to this point. Once acknowledged, there was new pain, but also freedom. When you’ve come to terms with your worst fear, it loses some of its power. I’m still afraid of what is to come, but it no longer paralyzes me. We are on borrowed time, and it can’t be wasted on fear.
We don’t know how much time we have with her – it could be months, it could be years.
Still true. I didn’t think that we’d make it through the winter, and now we are facing our second. She is so fragile. But maybe we can do it again – God willing.
If you have been around Julianna, you know that she is one of those kids – her spirit is incredible and resilient, and she is wise beyond her years while being delightful and funny at the same time. She is exceptional. I have struggled with this as well – b/c it always seems that the children who face the most serious illnesses are also the most special. If I had my choice, she would be more ordinary – and we would be able to see her grow up.
I have come a long way in accepting what I cannot change. The same God who made Julianna bright and lovely also allowed her to have a cruel disease. I believe that children who are asked to endure serious illness are given strength that the rest of us cannot understand. They are special. I think it’s God’s way of saying “I’ve got this. Just follow her lead.” So I follow.
Things are complicated here. It’s not an easy time for us but we are trying to trust God. It’s the only way.
Please keep us in prayer.
Michelle and Steve
Prayer has given us this beautiful year. When I wrote this letter, I could not have imagined that I’d still be sitting here tonight, by Julianna’s bed, waiting for her to fall asleep.
Last night, I gave her one last hug as I tucked her in.
J: I will love you forever.
M: I will love you forever.
J: I will always be your baby.
M: And I will always be your mom.
J: Not when we die…
M: Yes, even when we die.
J: Mom, will you miss me when I die?
M: Oh, Julianna. I nod.
J: I don’t want you to be sad. I want to give you flowers so that you remember me.
M: Julianna – it could be a long time – you’ve done so well. Do you worry about dying?
J: Nods. Sometimes. I’m used to things here. I’m not used to dying.
M: Of course not. No one is. We only die once. Sweetie, I don’t want you to worry about it.
And we prayed. Prayed that she doesn’t ever get sick again, and that she won’t be afraid of anything. I thanked God for the joy that she brings and told Him how much we love her.
I stayed there, kneeling by her bed until she fell asleep.