In the age of moms groups, meal trains, and GoFundMe pages, it’s easier than ever to ask for help from your community. A simple post with a picture and a link and you’ve spread your message or your situation to hundreds, if not thousands. It’s amazing the access we have to each other. But the connectivity seems unearned from my perch. Every time I start to write one of those posts or pull up a picture of my child in the hospital to put on Facebook, it seems to shout “I can’t handle this and I need help.” Being the mom of a chronically ill child changes the way you view things. It changes your entire world. And it also changes the way you accept help.
If you’re my friend or friends with another mom of a chronically ill child, I know your heart breaks for us. I know you want to do anything you can do to be helpful, thoughtful, and impactful. And we need you, boy do we need you. But being the mom of a chronically ill child is a swirling world of emotions and irrational thoughts. Here’s a quick peek into our world, and, if you feel called to help, here’s how you can help save us from ourselves.
I get angry
I get angry when I hear the school bus come and my son is still in bed or see an email from the teacher happily announcing the classroom activities for the week I know he will miss. I get angry when we lose the pinewood derby in Cub Scouts because we were too sick to attend the meeting that showed us how to put the cars together correctly. I get angry that no matter what we do, and how hard we work, and how many hours we spend, we are never caught up.
I doubt myself
I doubt myself every single day. I wonder if I’m making the right choices for him medically, spiritually, and emotionally. And I cry. I cry A LOT. I cry to feel sorry for myself, I cry to feel sorry for my son. I cry to thank God for the strength he has given me to keep going and I cry for being so lucky to be this wonderful child’s mother. I cry for the medical staff for taking such great care of him and I cry for all the medicines and medical supplies that work so hard to try and keep him healthy- both because he has to take them all and because we are fortunate enough to be able to provide them for him.
I don’t tell you everything
As close as we are, I don’t tell you 90% of what goes on. I don’t tell you about all the appointments or the extra treatments or how we had to stop going to an after-school club my son was really excited about joining because he got so far behind he couldn’t participate. I don’t tell you about the anxiety I have every morning waking him up to see if he’s sick, and I don’t tell you about all the money we spend on medical supplies, prescriptions, hospital hacks, movie rentals for the iPad, or slippers for the hospital. I don’t tell you about how I boot up the laptop in the middle of the night to try and keep up with work emails and how hard it is for me to get to the gym and take care of myself.
I won’t ask for help
“What I can I do to help?”
“Praying for you all!”
“What do you need?”
I smile and tell you I’m fine and that we are doing great. I tell you he’s getting better and that we are hanging in there. I don’t tell you my laundry hasn’t been done in two weeks or that my daughter had cereal for dinner for the last three nights. I tell you it’s really not that bad, that it could always be worse. “At least we are home” or “thank goodness we have all this support at the hospital” or “he’ll get better in a few days” are all lies I say to deflect. And I guess they’re not lies because I believe them. I have to.
I am strong because I have to be. Not because I am. I won’t ask for help. I can’t allow myself for one second to be anything but my son’s unwavering rock of support and strength. I can’t bounce between the two. I’ll tell you the hospital room is great and we have everything we need because that’s what I tell my son. He looks to me for how he should feel and manage through. It’s hard. I’m not naturally built for this.
How you can help
If you really feel called to help your friend with a chronically ill child, here’s my advice. Don’t ask, just do. Ask for forgiveness later. Drop off food and only tell us when it’s done. Send a Smilegram to the hospital. Drop by and just give us a hug. Give us permission to feel, and vent, and unload, even if we don’t say a word. Don’t let us make an excuse for why we don’t need anything, because we will. I promise we will.
It’s super hard for me to pick things from a menu or detail for you what’s falling through the cracks. I’m not afforded that luxury. I’m spending all day at home doing treatments in between conference calls or trying to figure out who’s doing the night shift at the hospital between my amazing husband and my parents. I’m trying to tell myself I’m not a horrible mother if I leave my son in the hospital room for 5 minutes to get a cup of coffee or if I visit the chapel on the way into the hospital.
I am so thankful for you
I’ll say it a million times and I mean it more than anything – I can’t do this without you. I am so grateful for you. My life and the life of my family is better because of you my sweet friend. Even if I never tell you, or I tell you over and over again, I am so thankful for you and for your kindness and your love. This is a world I never imagined, and it’s people like you who help me make the best of it.
Did I miss anything? Tell me below in the comments!
