What Not To Say

My daughter had 2 seizures this past week.  It was the first time she has ever had seizures.  We entered into an unknown medical territory that many have journeyed through, but for us it was new.  And it was shocking.  And it is still terrifying.  We don’t often broadcast when something major happens, because we are fortunate to have wonderful friends and family who create a safe space for us to discuss our fears and frustrations.  Most people don’t know the ins and outs of our doctors visits and medical needs and worries and frustrations with the process.  We don’t tend to give difficult information to people, because they can’t do anything about it.

And there’s another reason we keep most of this to ourselves.  When people can’t change a situation or make it better for you, they say the WORST things.  They have terrible replies.  Things that make you feel worse when you hear them.

“God only gives special need children to special parents.”

“Special needs children go to the best parents.”

“God only gives you what you can handle.”

“There’s no one else in the world that could handle this the way you do.”

“I could never do what you do.  You are so strong.”

Good lord, just be quiet!  Do you really think that there’s a God picking and choosing who gets what child?  Do you really think there’s an eeny-meeny-miney-mo situation happening in matching parents and children?  Do you really think that God had a hand in making my life exponentially more difficult to build my character and make me a believer?  Do you really think that if you birthed a special needs child that you would just throw your hands in the air and give up?

Here’s what I think.  I think that my daughter is amazing.  I think that she touches lives and opens hearts that most other kids cannot.  I think that everyone who meets her has a different view on the world because of her.  I think I will always do my best to make her life better and easier.

I also think that if you birthed a special needs baby, you would handle it.  You would advocate.  You would fight.  You would figure it out.  You would find a new routine, a new structure and make a new plan.  Because you have to.  I wasn’t born with this resilience, this fight, this patience.  She brought it with her.  She came in a package that demands those things.

Here’s what I do not think.  I do not think that there is a God that is making tiny humans with chromosome abnormalities to build the character of those around them.  I do not think that God is intentionally picking parents for special needs children.  I can’t believe in that God.  That God sucks.

Being a parent to a special needs child is hard.  There are days I feel like filling my pockets with rocks and walking straight into the ocean.  My life has been forever altered because I have a special needs child.  I look at money differently.  I look at public school differently.  I look at children differently.  I look at charities and non-profits differently.  I look at other parents differently.  The world is different for me because of her.  It’s not good or bad, it’s just different.

The next time the parent of a special needs child let’s you in on their struggle, just listen.  Let them know that you hear them.  Be their advocate and let them lean into you.  And if you can’t find anything to say, that’s ok.  We all need a little quiet every now and then.


One thought on “What Not To Say

  1. Thank you for speaking from your heart! Very true words. We may have a different journey, but we are on the same path so I understand every word. Hope to see you soon!


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