Tuesday, February 25, 2014


We had to do a pretty extensive cognitive, behavioral, speech and gross/fine motor test for Will's application to the next school. We received the preliminary findings and I have never been happier to see the word "average" and it be affiliated with Will. Not delayed, not behind, not special - just flat out average.

In a world where being average doesn't seem to get you much. In a world where parents prefer to hear their child is above average. Where parents push the limits to get above average outcomes for their children.

My son, in many categories, is average. His intelligence has never been a question for me, but now I have proof. He's smart (and a smart a$$).

My son, in many categories, is not average. He is above average. I don't need a test to prove that.

He exceeds my expectations every day. This morning, while I was feeding Quinn, he took his cup of water from the living room and went to the kitchen to put it in the sink. His return time to her room was lengthy so I went to see the problem. I could still hear him talking to himself and moving around, but no loud thuds so I wasn't too worried. (big trees fall hard)

Turns out, he spilled his water along the way. I found him with a hand towel wiping up water off the floor. I didn't ask him to do this, he certainly didn't tell me had spilled. But here was Will, cleaning up his mess, doing his part. He was trying to mop it up with his foot, balance himself and not step in the many puddles of water. A task that is difficult for him. It was such an honest moment and his intentions were so pure. I was so proud of him.

The stark reality of his physical abilities were described in this testing assessment as the ability of a 19 month old. My nearly 60 month / 5 year old son can't run, skip, jump or hop. At first I had myself a good cry about this. It breaks my heart to see him try so hard and know his body is holding him back from accomplishing "average" tasks.

Then I realized that while it's heartbreaking to think about this, it's also an amazing accomplishment. The fact that he is diagnosed with a progressive and fatal diseases that robs his body of the energy needed to function, but yet he pushes on. We are some of the very very lucky few whose child is average. I will never, ever take a single thing Will can do for granted. He has been given more than many others.

I fear for the future and how he and we will handle loss of abilities. The higher the climb the longer the fall. Who knows when, how or if (I hope and pray that the if is a big IF)... But, the future is not here and if all I do is fear it, then I will never enjoy my wonderful son, who exceeds all my expectations and is anything but average.

My average kid - working harder than any other kid I know. (19 months old)


  1. It's actually really great to hear that Will is "average" in his tasks, although as you said that anyone who has ever spent a minute around him knows he is anything BUT average! I love that Will was cleaning up after himself without being asked. What a guy.

  2. This is fantastic news, Lori. He is incredible in every way. Well done, Will! XOXO

  3. Awesome! I am so happy to hear that Will is progressing along nicely! It seems as though his mind is making up for were his body fails him...wish mine did that;) That is so funny and cute that he thought to clean up his own mess without help...sometimes they just surprise us. Good to hear from you, take care of those kiddos and you too! Love and hugs from San Antonio!