Why I No Longer Tell My Chronically Ill Son, 'It's Going to Be All Right'
“Don’t worry, it’s going to be all right.”
It’s an innocent enough thing that we say that is meant to offer support and encouragement. When I was small and played with dolls, and my dolls had a boo-boo, this was something I said to them. My mother said it to me all the time when a problem came up. And when I became a mom, on the countless nights I spent awake with a sick baby, I would be whispering “It’s OK” as I soothed him back to sleep.
I thought my job as a parent was to make things better. I’m supposed to be able to take any problem my child has and be able to work together to find the answer. I’m the boo-boo fixer, whether that boo-boo is physical or emotional. I’m the one who is supposed to be able to assure my child that everything is OK, that things aren’t as bad as they seem, that any problem can be overcome with a bit of work. I’m supposed to be the supermom, cape and all, that with a single wave of my magic wand, make everything good again.
This was my vision of motherhood, as I’m sure a lot of other soon-to-be-moms see themselves being like this, too. For awhile, my life as a mother was a lot like this. Colds, ear infections, sore throats would come and go, and everything would be all right again. Growing pains would come and go, and then another period of “all-rightness.” I could easily soothe my growing boy, telling him “It’s going to be all right.”
But what about when you can no longer promise this? What happens when you can’t honestly say that things are going to get better?
My days of motherhood are now spent playing a lot of other roles, but my primary one is still “boo-boo fixer.” Nine years ago, my son Jacob was diagnosed with epilepsy. Then four years ago, he was diagnosed with severe Crohn’s disease. Since then, he’s been diagnosed with anxiety, ADHD, severe psoriasis, Long QT syndrome, eye inflammation, Ehlers-Danlos syndrome/joint hypermobility syndrome… He’s in near-constant pain, suffers multiple infections due to his immuno-suppression, and lives with daily vomiting and nausea. My vision of my role of motherhood, of being the one to help make it all right, has been completely changed.
I no longer tell my son that everything is going to be all right. That, in itself, is all right. Jacob knows enough about his medical situation to know that several of his problems have no cure, and can be difficult to manage. He was told that after he had his colectomy, things “would go back to normal, you’ll be all right.” That didn’t happen. With each new medication we try that is supposed to “make things better” our hopes go up, only to come crashing down with severe side effects, or failure to help manage the disease it’s supposed to treat. It is devastating to be promised improvement and then to experience this type of letdown. So we don’t talk about things being all right in the future. Instead we focus on the moment, the little things we can do together to make each day a bit more manageable. Life has to go on, even when there is no magic wand. There’s nothing “all right” with what Jacob lives with daily. There’s nothing good that comes from watching your child suffer, other than the motivation it creates to keep fighting back.
How I see my job as a parent has completely changed. I no longer think my job as a parent is to be able to take away his pain or to hide him from a painful reality. Don’t get me wrong, I would give anything to be able to make him better, that still hasn’t changed. My job, though, isn’t to find a way to take it all away — my job is to help my son to develop the skills to cope with the challenges that life has brought his way. My job isn’t to protect him from all of the world’s horrors, but to teach him to understand them so he isn’t afraid and to allow him to find his own way of making them better. My job is to help him appreciate the small things in life, to celebrate the small successes, and to focus on the moment rather than the long-term, bigger picture.
I’ve watched my son grow in so many ways during his many medical crises, he’s actually the one who is teaching me what it means to be a parent. Every time he has to have a painful procedure, and there’ve been many, he teaches me about bravery. Every time he has to try something new, something scary, he teaches me about courage. He’s taught me what it means to be strong, to never give up on hope and to keep going no matter the size of mountain in your way. He’s taught me about generosity through his fundraising and efforts to make a difference in this world. Most of all, he’s taught me about life and love. I don’t need to fix Jacob; he’s the one who has fixed me. He’s the one who’s made me the best mom I could be to him, and also a better person. Things might never be the typical definition of “all right” so instead I say:
2. You are so strong and brave, you can do it!
3. Just keep swimming.
4. Hold on.
5. This is just one moment, the next might be different.
6. Keep trying, keep hoping, keep dreaming.
7. So long as we’re together, we can face anything.
8. You are not alone.