The longer I am on this journey, the more I realize how little in life is accomplished without the help of others. This is true in a very specific way in daily life for us…we need the help of our doctors, nurses, and therapists to keep Ez healthy and safe. I would not get through the week without the regular very real support of my parents and step-parents in caring for Esmé.
But it is also true more generally. The more I work within the nonprofit medical world with the lovely “Mommas/Mamas/Mamans” over at Feeding Tube Awareness, the more I watch my partners in PCDH19 fundraising coordinate medical researchers, the more I see the spirit of lifting each other up that exists within the community of medically fragile children, the more I am convinced there is only one way through this difficult world: collaboration, coordination, and friendship.
This week we had a reminder of this close to home. We met up with Heather from one of our favorite local organizations, Jake’s Help from Heaven. They give grants for medical equipment and tools for children who are medically fragile. They also run an equipment exchange. I have written about them and the awe I feel in their presence before here. But this visit was different than our others.
I went by their house to try out, and hopefully borrow, a chair that would offer Ezzy the appropriate support. The idea is that it will make it easier to work with her on various activities with her sitting facing me. Also it will give me a spot to put her safely while I do things like fold laundry and cook. When we got there it turned out that one of the chairs we were trying had been Jake’s. As Ezzy sat in it I felt flooded with emotions…I felt so connected to Jake, a child I had never had the honor of meeting, but whose life has directly touched ours repeatedly, both in the form of help and friendship.
We went home with Jake’s chair and one of his light boards and another item that was going to be his. As I write I am sitting and looking at his chair…and I just feel almost weak at the knowledge of how close we came to losing Ez and, if that had been our reality, how much strength it would have taken for me to let someone else take something of hers. And I feel overwhelmed with pride to call Jake and his family my friends.
It never fails to touch me how these battle scars that come with dealing daily with seizures, aspiration, and any number of other life-threatening medical situations with your child seems, in so many cases, to create an instant bond that can feel so much like family…in the way that you can relax into another person, be 100% yourself–offbeat sense of humor and all.
Heather and I had some time to talk…about Jake, about Esmé, about ice cream. But more importantly, I think, we recognize in each other something that is hard to put into words. It is a knowledge that the deep distant fears of so many parents are part of the daily reality of some parents. And the sense that the bravery and beauty and strength exhibited by our children, and other children like ours, is lost on so many people. And the desire to acknowledge children like Jake, to talk about them, honor them…And it is the sense of humor that you can only share with someone who can laugh about having to regularly yell “take a breath” to their toddler in the backseat of a car while trying to simultaneously pull over and reach for them.