There’s a very deep, special bond amongst those of us in the special needs community on the whole.
In a world where our lives are totally different to those of our friends with typical children, where we spend our time feeling like it's one fight after another with no progress evident, there’s a huge sense of belonging when we get to talk to others in the same position.
For us, while sharing our fears, trials and battles with those who genuinely do understand may not actually make the problem any smaller, it DOES make it easier for us to deal with.
Sometimes, those fears are so huge that we aren’t able to confide in others who haven’t walked this path with us.
Sometimes sharing those fears and battles with our wider family and friends just doesn’t feel possible.
Yes, they walk that path alongside us but unless you’ve felt those very same sharp and agonising stones under your feet it’s impossible to fully grasp what it feels like.
And we share each other’s joy when our kids overcome some hurdle, or achieve a new milestone.
But it is also a tremendously frustrating thing, to feel how much someone else is hurting and to be completely helpless to do anything to alleviate that pain.
Right now, many of my friend’s children are either facing extremely risky surgeries or they are struggling against a system which seems unwilling or unable to offer even basic support for families in crisis.
We are each other’s life lines, but right now I just want to get into my car and drive to see them, and to give them a proper hug, not a virtual one.
More often than not, there are no answers, no solutions.
Life with medically complex children often feels like the incomplete problem, where no matter what you do there is no solution.
In such times we feel like all we can manage is getting out of bed.
But having that monumental support genuinely does make us feel like we can take on the world.