When there aren’t that many of you… people tend to find comfort in numbers.
There is a comfort that comes from knowing that someone else really “gets” you. There is a serenity that comes from knowing that your friends can help you navigate a world of complex medical issues.
There is support in those numbers. We love each other. We grieve together. We celebrate together. We understand that life isn’t measured by years or days; instead – minutes…. moments. Life is measured in moments.
But, sometimes support groups are not all they are cracked up to be. Sometimes I feel that WHS is all around me. Like the noose that suffocates me. I just can’t break loose.
Maybe today… I don’t want to discuss deletion sizes and how it may or may not impact our kids.
Maybe today… I don’t care.
Maybe today… I don’t want to be reminded about all the scary dental/urinary tract/ kidney/ EVERYTHING issues.
It isn’t that I don’t care. We have those issues too.
But, just maybe – today … I want to pretend that we don’t.
And yet, being a part of 4 WHS support communities and 4 other special needs communities – complete with notifications, e-mails, and updates, is sometimes overwhelming.
It tears at your heart. … to know so many people who have medical issues. To read the fear of our friends. It isn’t like a “real world” – where you know one child in the hospital… it is this medically fragile world – that can have numerous children in the hospital on any given day.
Sometimes it is us. And we need support. Sometimes it isn’t… and – it can be overwhelming.
Confession: I don’t want to look the future… positive or negative. Because, the truth is – every child (with or without WHS) is different. And one person’s reality is not ours. Nor is our reality someone else’s.
Maybe today – I just want to be us. Family of 5.
ps. I really hope our friends in our WHS community can understand the post of my heart. And thanks, Shell – for letting me share it.