Walk this way -- just give us a kiss. Or some coin...

My mother is a baker
A baker a baker
My mother is a baker
She always goes like this…

My father is a trashcan
A trashcan a trashcan
My father is a trashcan
He always goes like this…

**cue bales of little boy giggly laughter**

My boy is blossoming. Right before my eyes. And it’s amazing.

He's making up new words to songs to poke fun at his parents (note who got the brunt of the humor in the song lyrics I shared... not Mommy... heh heh heh)

He’s eating grown-up food – still soft and mashed, but it’s still real-people-not-toddler food – by himself.

He is engaged with this world around him. Identifying the colors of the clothes I’m tossing from the washer to the dryer.

“That shirt is vewy owange.”

Telling me what vehicles are sharing the road with me.

“That is a school bus. Going to school.”

Introducing himself to new friends and greeting familiar ones appropriately.

“Hewwo, this is Will” That’s usually said to a cute member of the opposite sex, accompanied by a cock of the head and a twinkle in the eye.

“Fowth fwoor pwease”, said as we get on the elevator with another kiddo and his mom at the hospital building on our way to feeding therapy.

I am amazed by my child. His communication issues prohibit us from having standard “what did you learn today at school” conversations, so I must glean insight into classroom activities and his progress through these casually dropped little nuggets of information. Sure I’m in constant conversation with Will’s teacher about things, but that’s more administrative. These moments are of joyful enlightenment.

And they are what I’m clinging to these days as they are juxtaposed against some unfortunately constant and slightly unsettling health nonsense for my beautiful boy. He’s having more frequent seizures – some brief, some more serious. We’ve tested and poked and probed and had multiple conversations with neurologists and neurosurgeons. Chances are that this increased activity is due to either the decreasing effectiveness of his anti-convulsant and his recent growth spurt. Which makes sense – but sometimes sense isn’t always taken into consideration in the heat of the stressful moment.

Here’s a little secret – please pretend to be slightly shocked when you read this, ya’ll – I have some serious control freak tendencies. Which can drive me a bit round the bend – especially where Will is concerned. It pains me greatly not to be able to head the seizures off at the pass or to make them stop or to figure out what the hell makes them start. If I could, I would. Everything. Something. Anything.

I’m going to do a Very Important Something this coming weekend – something in honor of Will and all the other kiddos who came into this world under less-than-optimal and precarious conditions. I’m lacing up my Brooks trainers, putting Will into a groovy-all-terrain rickshaw stroller thing and hitting the happy trail in Safety Harbor. It’s March of Dimes walk time.

This is the third time we’ve actually signed up to participate in this profoundly personal fundraising event. Both previous times were thwarted by a seizure, although last year I walked the event alone, leaving my boys home to rest and recoop. I’m praying that we won’t have any “funny business” this year so that we can participate as a family with friends and loved ones who have volunteered their time to come walk along with us.

That being said... yeah, you had to know there was a pitch coming after that long pimp warm-up… we would love to share the day with as many people as possible. Come walk with us, if that’s a geographical or logistical option. Toss us some coin – Will would not be where he is today if not for the research and activities of the March of Dimes. Or simply cheer us on -- go team go!

I’m a firm believer in the importance of being a good community citizen – of giving of yourself to better the world in which you live and of paying it both forward and back. The March of Dimes is an organization in which I believe passionately – it advocates for a cause that is profoundly personal. You supporting Will and me as we try to give a little back both humbles and blesses me deeply.

Thank you for reading this. For supporting us as we navigate our very unconventional life. And for simply being our friends. Here’s to walking for Will – three miles that will make a difference.

Will says "Walk this way with us on Saturday."
(Yeah, I know. But you gotta admit, you laughed just a little.)


Web-Betty said...

I can't wait to meet Will on Saturday. He is a wonderful, funny, brave little guy. I'm thinking of having The Goose walk with me. I wonder if I have to sign him up?

Karin said...

This post makes my heart sing! I dream about the day when we can take Aidan and Will to Disney World together and listen to them sing songs the whole ride there and back!