Your heart is bound to break when you live in the special needs world

My heart is heavy. A few days ago, driving home from therapy actually, I leaned that one of the (many) children I know, had died.

Someone asked me “what happened?” Nothing happened. It was his time. He was on hospice, he was declining, but it hurts. I’m not his family…but I am within his community.

Nothing “happened”. When you live in this world…this just happens.

And how fucked up is that?!?!

You live in this world because you’re forced to. Because your child, or sibling, or whoever, introduced you to it. And now you’re a member for life.

A member of a club full of community and love and understanding…but a club just absolutely filled with pain.

A member of our club, a child, died this week. And 2 others are in the hospital. It doesn’t ever hurt less.

My 2 boys have secured our membership into this hurtful, yet heartfelt club.

A member died. It happens a lot.

Will the next member be my child?

So many are fighting for their lives, each day a struggle.

And I have the audacity to wake up and struggle? Who am I to have a hard day, when members of my – of my children’s – community, are quite literally fighting for their lives. Every day.

I say that I’m doing the same. That I’m “fighting for my life”. And I am. But it isn’t the same. Not in the same way our kids are.

It’s a membership I never wanted. It’s a membership I have had myself, from my own struggles.

Being a member of the special needs world is….so painful. These kids are stronger than we will ever be.

I wish no one ever had to learn to be strong enough to bury their child. I wish I didn’t have to prepare myself to potentially bury mine.

Tonight we honor Hawk. We pray for Hunter and Rainey.

And we hope beyond all hope that my children never turn me into a member of a club that I never want to join. I know the pain….but it hurts me so much to know that I could know it even more.

There is nothing anyone can say to Hawks mom. Or Nicole’s. Or anyone who has had to bury a child.

But I will be there. I will show up in the face of discomfort. If nothing else…I can be there.

And I hope someone would be for me one day too.

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