You mean well, but ….

I wrote a few weeks ago but a parent in our town that got “that” phone call. The one no parent wants to answer. About what that parent needed. This is about what they don’t need. And please forgive me for thinking this is a “poor me” post. It’s been a week. But this isn’t about “me” it’s about every parent who got that phone call, or the parent that got the child they love but that child isn’t what isn’t in the “what to expect book”

Don’t say: “You’re strong”. Followed by “I don’t know how you do it.”

We were not given a choice. It’s not like kids come with a warranty. Parents do not get to choose the “easy” kid. We are not allowed to just let that unexpected child to just be. We have to fight for everything. From getting a diagnosis, to obtaining an IEP to making sure our child is safe. We aren’t allowed to be weak. We are not allowed to not “do it”. We are not given a choice, because this is our child and we have to be the best we can be to make sure they are given the best life possible.

Instead say: wow, what can I do to help you? Because I know you are strong, but only because you have no choice.

Don’t say: “Special Parents get Special Children”

Um….no. There is no interview, or testing to prove you can handle a child that has more obstacles than a Navy Seal candidate. Trust me, I think BUDs might be an easier obstacle. I don’t know that as a fact, just as anyone who utters the “special parents” phrase understand how absolutely ignorant that statement is to a parent that is struggling to make sure her son doesn’t break her windshield. Let me put it this way, would you rather have an honors student with a full ride to Harvard or a child that throws poop at you and cannot verbalize why? “Special Parents” are if chosen is the biggest FU since the phrase “bless your heart”. Don’t say it. Ever.

Instead say: Wow, this was totally not in the what to expect book. Do you want me to help you write a review on what not to expect?

Don’t say: God only gives you what you can handle

Truth? Most of us have your God in a permanent time out. Those of us in this life think, fuck the God that made us have to choose if our child lived or died. How dare “he” let our child suffer. What kind of benevolent God would let a child need life saving measures or a parent have to make the choice or if not critical have a parent have to stop a child from harming themselves or their siblings? What God gives a child cancer? Those of us in this life no longer believe in your God (and don’t say you’re praying for us unless you are willing to take our child who just literally shit the bed for the weekend). We want to, but honestly we are just done.

Instead say: I believe in God, but I don’t understand why he has allowed you to be hurt this way. If you believe. If you are like me and God is in permanent timeout, say: What the Fuck, if there was a God your child wouldn’t suffer.

And before anyone judges, unless you have held your child down for a test, been through countless IEP meetings, dealt with aggressive behaviors, unless you have honestly had to make the choice if your child should have life saving measures or not….then don’t comment.

Don’t say: I would do XYS

If you have a typical child, rejoice. But don’t judge us others who are just trying to get through the next 24 hours. Yes, our child might have chicken nuggets for dinner or wear a bun every day but we pick our battles.

And sometimes, if you need to say something to say is:

I don’t know what to say. I know you don’t have a choice, but you amaze me because while I know if I had to I could do what you do. But since that isn’t my life lets go for a walk (or insert activity here) and know I am here for you. For the good times, for the bad times and most importantly for the ugly tears times.

Don’t say how do you afford this?

Instead say: this is how you apply for Medicaid, for unemployment for FMLA. Find out how they afford this life before they are bankrupt.

None of us asked for this unexpected life and while the Holland poem might help at first, we don’t need the “go to” brush offs. And the next time someone hands you a book that starts with “what to expect” answer with they have no freaking idea. Because that book is for the text book child, not the child that makes you love them while you cry at the injustice.

I love my Bridget, but there are so many moments that bring me to my knees.

We need our friends. Our Village. Our tribe.

Thats how we survive. Not just the unexpected but the comments that while might be well-intentioned brings us to our knees.

You mean well, but…we need more than words. We need support in action

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