Don’t Let ANYONE Steal Your Hope

I’m a part of many online forums.  I frequently see parents post that their families or friends are not supportive.  People question our pursuit for progress or a cure.  Strangers give unwanted advice about accepting our child’s disability.  Religious connections tell us to pray and accept God’s will.  I believe people, for the most part, mean well.  I truly believe in their heart of hearts, they mean well.

But, I’m here to tell you that I don’t care what their intent is…they do not have the RIGHT to take away your hope.  As a mom in your shoes, I’m gonna tell you that I want you to hold on to hope as long as you can.  I don’t want you to EVER give up hope that your child will recover, grow, progress and succeed.  Hope is your your power!

Listen, when a child has a significant disability, the diagnosis tends to be excruciating for parents.  Like, it’s a pain that most can’t even imagine.  So, what do we do?  It takes time for some, but the day we find out is pretty much the day we turn into soldiers in a war we didn’t want to ever be a part of!  We fight or, as a softer generation says, advocate, we advocate.  We scream.  We yell.  We cry.  We beat ourselves up, emotionally and physically.  We lose so much including people that we never imagined we’d lose.  So, we fight to keep everything we can possibly keep.  We fight for our child’s rights.  We fight for our rights.  We fight for our family.  We fight for medical advancement.  We raise money.  We give money.  We lose jobs.  We travel a path that we could never have imagined and it was most certainly not a path listed in the guidebook when I was in my 20’s.  But one thing that we cannot lose, no matter what, is hope.

I often share a long and sordid story about our journey with my son and his medical experiences.  (You can catch that whole story at one of my talks or on my YouTube channel.)  We really wanted our son to see a doctor that was in the Chicagoland area…really well known, excellent reputation, etc.  He had an 8 month wait!  Too long.  So, I came across his associate and figured they’d be two peas in a pod.  I was wrong.  (I don’t say that often, so maybe write this date down.)  The doctor spent 15 minutes max with my son and told me to institutionalize him…he was only 15 months old.  He told me that my baby would never learn to love or communicate or even do anything on his own.  He told me I should just learn to move on with my life.

I know we aren’t BFF’s, but by now, I’m thinking you have figured out that these comments from some half baked doctor did not go over well with me.  I said words to that man that would make Andrew Dice Clay blush.  People could have heard me in the next building.  I got looks from everyone and I…did…not…care.  I took action after I left that day to have his license removed or at the very least have him fired.  He was, shortly thereafter, removed from the primary physician’s website, so I like to think I was successful.

The point?  HE DID NOT HAVE THE RIGHT TO TAKE AWAY MY HOPE!  No one has that right.  Parents, if we have one thing, ONE THING, that we can count on, it’s that within us is an endless supply of hope.  This life takes a lot away from us and it’s freaking hard…but hope should NOT be one of those things that gets taken away.

When people say these things, when people try to get you to just accept where you are or where your child is, tell them HELL NO!  You can be nicer than me if you’d like, but under no circumstances are you allowed to lose HOPE!  It’s all we have.  We have no guarantees and, to be fair, no one does.  But, as parents of children with disabilities, we have few things to hold onto.  Hope is one of those things that you better hold on to with a death grip.  Because under the hope umbrella comes many other things, all the other things you need to win this war…fight, love, perseverance, strength, and so much more.  That umbrella of hope is what keeps all of the other things available.

Hope. Whatever you have to do or whoever you need to let go of to keep it…do it.

Once you’ve lost hope, you’ve lost everything.  But…

“Once you choose hope, anything’s possible.”  Christopher Reeve

With Love and Hope,


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Disclaimer:  There are exceptions to every rule.  Children and adults with disabilities are people with their own individual needs and desires.  The ideas and advice given in this blog are for your consideration only and should not be taken as legal or educational advice, as every single situation is different.

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