Parents please

The boys and I were at the grocery store this afternoon, and as usual Alexander excitedly pushed Christopher around and caught the eyes of a few shoppers. There were two in particular who were extra curious, a boy and girl close to the ages 3 and 6. The little girl watched Christopher with curiosity as we zoomed by grabbing a pineapple and plums.

I heard “mom, that looks like a wheelchair” coming from her as they began to pass us on the other side by the butter lettuce and bell peppers.

What came next from mom surprised me…”shhhh….just keep walking.”

Just keep walking? This was most definitely not what I expected and immediately I felt a twinge of sadness in my chest.

I wanted to turn around and say this:

It’s okay if she’s curious. It’s okay if she wants to know why he isn’t walking. It’s alright if she talks to him, in fact it’s welcome. He’s a little boy, just like your little boy. He’s sweet and charming with the most adorable grin. He loves Bubble Guppies and pulling his big brother’s hair. Please don’t tell your children to just keep walking. In that one sentence you just taught your daughter to ignore someone with a disability, to ignore someone who is different. You taught her not to see my son.

Now I don’t know if mom helped explain his need for a wheelchair on their way out of the store. I can only hope she did. I can only hope that she assured her children that people come with many different abilities, and we can embrace each other’s differences.

Parents, please teach your children that being different is okay and it’s more than okay to ask questions.

Help your kids make sense of it all, because if you don’t, who will? They need you to help them understand.

If you don’t have the answers, all you need to say is “maybe you should talk to him?” We all know that moms love to talk about their kids, and as a mom of a child with special needs we won’t pass up a chance to advocate and teach others. I don’t have all of the answers but I will be more than happy to try to answer any questions your kids may have.

Please encourage them to walk up to us and have a chat.

Teach them acceptance not ignorance.

Show them love not avoidance.

And most of all, don’t tell your kids to simply keep on walking with their questions swimming in their heads.

Start the conversation and please let them see my son.






Best buddy

There are days when I want to tell you that I’m sorry.

I want to take you in my arms and tell you that I’m sorry this isn’t what I planned.

My dreams for you and your little brother looked a bit different.

In my dreams you were running around the grocery store knocking cans of beans off of the shelf and blaming each other.

In my dreams you were running through sprinklers and tattling on one another for turning off the hose.

In my dreams you were splashing in the tub together with bubble beards on your faces, only to soon be yelling “he’s in my spot!!”

In my dreams you were running out to catch the bus with your fingers linked together…sometimes.

In my dreams you were teaching him how to ride a scooter, complete with choosing a band-aid after a small mishap.

In my dreams you were best buddies.

But what I am realizing is that my dreams of what your childhood could look like don’t matter. What your childhood looks like now is the only thing that does.

You lovingly push your brother around the grocery store, and adamantly tell me “I got this.”

You swim up to your brother at the pool and ensure he giggles at the sight of your goggles as you come up for air right near his face.

You reach out to hold his hand in the car while he’s crying and remind him over and over that you’re right there.

You exclaim to me that you believe he said your name anytime he giggles and babbles while you two play peek-a-boo.

You remind me over and over that you need to hug and kiss him before we head upstairs to his crib for bed.

At specialist appointments you are more worried than I am and frightened for him when he has to get a lab draw, but reassure him over and over that he’ll be okay.


You are best buddies.

Now I really need to apologize. I’m sorry for not giving you the credit you deserve. I’m sorry for not believing that a childhood out of the ordinary could be extraordinary. Just because I know your relationship could be so different doesn’t mean you do too. Would you change it? I don’t know?

All you know is that you love your little brother. You have yet to ask me the hard questions. Why doesn’t he talk? Why can’t he walk? Why doesn’t he eat? It’s astonishing to me that you don’t see those things, all you see is him. Your silly little brother who pulls your hair and blows raspberries with you. Your little brother who wants nothing more than for you to make him giggle. Your little brother who loves when you push him fast around the grocery store while I tell you over and over to slow down. Your little brother who eagerly leans in for a bedtime hug. Nothing else matters.

The only thing that matters to you is him. Your best buddy.






My tribe

There’s life before, and life after. Before. Before the hospitalizations. Before the surgeries. Before the specialist visits. Before the unknown and constant worry. Before the sleepless nights. Before the hours upon hours of therapy. Before the tears. Before CDG.

Life before was akin to walking on a paved path. Smooth with an occasional rock or stick in the way. Nothing I couldn’t walk around or simply step over.

Then there’s after.

All of a sudden my smooth path stopped abruptly. Up ahead I saw rocks. Not just pebbles, big rocks. Cliffs. Steep cliffs. Terrain never seen before. I looked around and didn’t know where to go. I was terrified and alone. I glanced over my shoulder at my smooth path and as much as I wanted to run back I knew turning around wasn’t an option. I had to face the unknown in front of me. I had no idea how I was going to navigate this new terrain. I shakily stepped onto the rocks and started to stumble, but something amazing happened….you were there.

You reached your hand out to help me gain my balance. You held on tight to me as I started falling backward. As I continued walking something even more amazing happened, more of you walked alongside me. Some of you looked at me with supportive smiles and reminded me I could handle this. Many of you walked next to me, all tripping and stumbling, but holding each other up never letting one another fall. Some of you have seen terrain like this before, and for many of you it was just as foreign to you as it was to me the first time I laid eyes on it. We continue to move forward, hoisting one another over boulders and linking hands to carefully sidestep on a ledge. It’s not all terrifying. It’s not all excruciating. Alone it would be but together we can do it. We look at each other with encouraging smiles that say you got this.

I couldn’t navigate this terrain without you. My tribe.

Thank you for picking me up when I fall.

Thank you for guiding me when I’m lost.

Thank you for laughing with me when I need it the most.

Thank you for carrying me when I don’t think I can push any farther.

Thank you for holding my hand in the silence.

Thank you for loving us.

Thank you for reminding me that there’s so much beauty in the journey.

Thank you for motivating me to make a difference.

Thank you for not stopping when the pavement ended. Thank you for being next to us as we navigate this foreign territory. Thank you to those of you who were waiting up ahead with your faded map to help us as we embark on this journey. Our life would not be the same without each and every one of you.

Thank you for being part of our story, and allowing us to be part of yours. Not a day goes by when I don’t have something to be thankful for.

And today, it’s you. My tribe.