Your baby is born, you get the diagnosis, you have the surgery or surgeries, then you have the aftermath of life with chronic illness. The initial outpouring support is overwhelming. You’re not even sure how to thank people correctly for the gestures that are done. You are so grateful and so overwhelmed by everything happening in your life at the same time. People you haven’t spoken to in years reach out, offer well wishes, ask if they can do anything. You never really know how to answer the question, “what do you need”. Shit, Seth and I STILL can’t answer this question.
Then the dust settles, you get discharged or the treatment plan moves over to extensive therapy, close monitoring, and ongoing imaging. Your child isn’t “fixed” or “better”. Your child is stable. The texts and phone call subside. You expect this from most, life is fast paced and we’re all on the move to the next thing.
I’ve spoken to a lot of parents while networking the last two months. The funniest feedback I received was from a dad who revealed how a friend was collecting food from coworkers to help his family out with cooking. This friend collected the food and NEVER brought it to this dad’s family. It’s become a joke amongst his family at this point but still baffles the family to this day. Why orchestrate a food drive and then keep the food? Something similar actually happened to Seth and I and all we can do is laugh. If you don’t have the means to deliver the help, don’t offer to take it.
The common factor between these talks with other parents is how the phone calls also stop from people that are supposed to be closest to them. I can COMPLETELY relate to this.
I had a conversation with a mom I met off Instagram and (off topic) she has a really cute Etsy shop. She had told me a situation where she had reached out to a close friend and simply said she missed this friend and the friends response was, “the phone works both ways”.
This is true. It is not rocket science. A telephone makes outgoing and incoming calls. What this person doesn’t realize is what home life looks like. The phone calls we do make and do receive are endless and to doctors, and scheduling, and to fight with insurance companies. In between these calls were shuttling our kids to and from appointments. Some of us have other children that also need their parents attention. Some of us have kids that we can’t expose to the world. We’re tired. We’re not sleeping. I don’t think anyone who hasn’t lived it gets just how much a “I’m thinking about you” text means to parents like us. It’s not a pissing match, but honestly- We don’t have time to reach out everyday and as selfish as it is, we still wish you’d understand this and we still wish we’d hear from you.
I get that there are several reasons for people backing off when something challenging is happening in a friend’s life. Some people don’t know how to handle situations with children and illness. Some people don’t know what to say. But the bottom line, and agreed amongst everyone I’ve spoken to, the worst thing you can do is nothing or stop reaching out. When your child is sick is when we need an ear the most, and usually in the middle of the night of those bad days.
We might not be able to come out, it doesn’t mean we don’t want to be invited. Let us make that call. You’d be surprised with enough notice what we can pull off. Just because we have a full plate of some not so pleasant days, doesn’t mean we don’t want to hear your good news! We love to hear positive things! Just because we have our own shit going on, doesn’t mean we don’t want to hear about the juicy details of what’s going on at work. Distractions are good.
But it is truly notable that this isn’t a numbers game. Although you may grow apart from the people who you didn’t expect to, you make new friendships and find ongoing support in the most unlikely places. I read somewhere once that losing 10 skin deep friends to finding one soulmate is a blessing and as you all know at this point, we are counting every blessing that comes our way.