My second-oldest child has gotten the chance of a lifetime: the opportunity to wish for and receive anything she wants, thanks to the Make a Wish Foundation. This is a dream come true for her, and it has come at the perfect time. She has epilepsy, and is slated for more involved medical care and testing with a prolonged hospitalization.
She’s been really down over the prospect of being hooked up to an IV and electroencephalogram leads for days on end, and who can blame her? After all, she’s eight. This isn’t something an eight-year-old should have to face, but the reality is that kids do get sick—really sick, with chronic and life-altering illnesses. All the time. And she’s one of them.
More than the poking and prodding, she’s worried she will miss her siblings while in the hospital. She will miss her cat that sleeps with her nightly. She’s cried more than a few times because she won’t be able to go outside and play—she won’t be able to even get out of bed much. So finding out that kind people want to gift her something has given her something positive to focus on when she needs it most.
When Your Child’s Life Hangs in the Balance
It has been a challenge to balance my joy over my daughter getting to make her very own wish with my grief over her qualifying. There is something so real about knowing that your child has a life-threatening condition and that it’s not getting better. Here’s the criteria from the organization that is helping my daughter, including: “[we] will work with the treating physician to determine the child’s eligibility for a wish, i.e. suffering from a progressive, degenerative or malignant condition currently placing the child’s life in jeopardy.” It is beyond sobering to hold your child and apply those words to her.
There have been more than a few moments where we have had to face the possibility that we could lose her, possibly right then. We’ve been in ambulances, hospital rooms, and even on a life flight. There are times you can’t do anything other than hold your child’s hand and pray and cry.
I’ve written before about my daughter’s health issues. She’s had seizures since before she can remember, so this is her normal. Her reality includes a pill organizer full of medication to take when she wakes and before she sleeps. She’s used to knowing there are things that she can’t do because it makes her feel weird, and that feeling can precede a seizure.
Now, you might think seizures aren’t a really big deal. They’re inconvenient, sure, and undoubtedly unpleasant. Before we started down this road, that’s about all I knew about them, and I certainly wouldn’t have described them as life-threatening.
But the reality is somewhat grimmer: 50,000 people or so die, every year, in America from seizures, SUDEP (that’s Sudden Unexpected Death in Epilepsy), and related causes. Of sudden deaths in children, 34 percent are from SUDEP. This is, for example, more yearly deaths than there are from breast cancer, yet it’s something most people have no idea about.
For too many people with epilepsy, there is no cure, no medication regimen that takes away all the seizures, and no answers about why they even have seizures.
The Dichotomy Between Intense Joy and Grief
I don’t mean to focus on seizures, though, but on how I have tried to face down the dichotomy between intense joy and grief.
I love my daughter deeply and fully. She’s an amazing kid (all my kids are) and everyone who knows her cares for her. She’s a joy to be around, and she remains upbeat and willing to deal with pain and discomfort in ways that impress me deeply.
Seeing her happy and excited makes me happy and excited. The joy we experience when we see things through the eyes of our children is a special happiness. It allows us the chance to have a fresh view of experiences that might be mundane for us. Our children give us the chance to grab a tiny bit of our own childhood—the innocence, the carefree approach to life, the appreciation for simple things.
Every night before my husband and I go to bed, one of us checks on her. We make sure she’s sleeping on her back—kids with seizures are more likely to die in their sleep if they are on their stomachs. I sit by her for a moment and watch her breathing. Every morning that she isn’t awake before me, my breath catches and I worry about what I’ll find when I open her door. When she has a seizure, it’s agonizing to watch and wait, to see her turn blue, and wonder if this is the time that it doesn’t stop, that she isn’t okay when it’s finally done, if this is the time we lose her.
I am so thankful there are groups to help families and children as we walk these tough roads. Explaining to my daughter that some people she’s never even met care and want to do something special to make her happy was really amazing, and I don’t use that term lightly. Through much of writing this my eyes have been full of tears, and I’ve had to stop and take a deep breath a few times.
Our Suffering Is Wrapped in Joy
So much of what we see and hear on the news is bad. It’s war and destruction and shenanigans from our elected officials. But there is good in this world. There are people who care for others, without any strings or expectations, voluntarily. Tens of thousands of people come together with the goal of making sick kids happy and creating a bright spot for their whole family. People donate their time, money, even airline miles.
We’ve also come into contact with truly loving and compassionate people at the children’s hospitals we have been to with our daughter. There is something very special about people who spend all of their working time with hurting kids and their families, and who do it with a gentle smile on their faces. Our family has worked through this with just one child, but the doctors and nurses and technicians there are part of the heartaches and joys of countless families. I can’t imagine balancing the emotions in that line of work, but our family is so very grateful for the people who show up every day to help when we are at our lowest.
This is the good in our country. This is what we can do when we work together to help children and to fulfill their wishes. And these children are worth it.