Once you have a baby with a life limiting disease or an illness that isn’t just a fleeting virus, your world gets so much larger and smaller at the same time.
You are given access to a community that you were previously oblivious to. Its a world of parents and families that are different from the general public in the fact that they don’t take health for granted. They generally don’t take much for granted, to be honest. Sometimes it starts in the NICU, where your ideal postpartum world is brought to a screeching halt. Sometimes its even earlier than that. Maybe its at an ultrasound when you catch the technician taking a little bit longer than they normally would. Or maybe its a day when your healthy child just isn’t right and you just have that feeling there’s more going on.
The most important feeling you get from this community is that you are not alone. You most likely are not be the first, and you certainly won’t be the last but we all fit in the spectrum of somewhere in between. Whether your child has a rare diagnosis or one that everyone “knows someone with that very same thing!”, we all share those feelings of bewilderment, sadness, helplessness and at some point, grief.
And it will come. Grief.
It might be fast and heavy, like an avalanche, burying you so swiftly, immobilizing you with the pain. It may come softly and slowly, like a thick fog rolling in during the night; where you awaken lost in an unfamiliar landscape. It may burn hot and fierce for a quick moment, setting your world ablaze, and then fall silently to ashes.
Regardless of when or how it comes, the only way to truly live with it (and you must, live with it), is to find a hand to hold onto. Someone to pull you out of the depths, hold you close when you feel like failing and give you the help you can’t ask for.
What is wonderful about this new community is that at some point, you will find a kindred spirit. Chances are that you would never cross paths with these people under normal circumstances. Maybe you wouldn’t even give them the time of day in another situation. Yet these people will become your lifeline in some of the critical moments in your life. It will be the most honest friendship you will ever have as you share something in common that no one wants, a sick child.
Your children’s hospital visits become a social date, you commiserate over problems you never thought you’d have, let alone share. You offer help and information that is lifesaving because you know how desperately its needed. You cry fat ugly tears when something happens to one of the children as it’s just too close to home. But you can rejoice in the small victories that may seem trivial or minute to most people, because when you live day to day, each second counts.
There are families I know only through Facebook or meeting them briefly in the halls. Yet I know these people understand my life more than my closest friends and family. On some level, we are all in the midst of an ongoing battle to keep our heads (and our children’s) above water.
When I was ready, I began to realize that despite feeling completely isolated and alone, I have always been surrounded by a network of people who can help. I just needed to look in the right places. I will be forever grateful to the posting I found on the bulletin board in the Unit 2 family room. It was life changing for me and my family. I have a circle of friends I could never have imagined in a million years. Just a bunch of crazy hospital moms and I love them deeply.