Is My Memory Going or Am I Short A Chromosome?


As my brain gets mature-er, it becomes more and more forgetful. Or maybe I have so much on my mind, something is bound to get lost in the shuffle. I’d rather go with that idea, but truth be told, this aging thing is happening whether I like it or not. And some forgetfulness I’ve heard is part of the package. So like anything, I must learn to adapt to the changes life throws at me. I don’t mind adapting, in fact, I find it kind of fun to learn new ways to do things. I just don’t like the initial learning curve of drawing complete blanks on things, but that is the motivation, isn’t it? If I didn’t recognize a problem, where would the need to solve it be?

Luckily I have a memory aid in this whole process. And he’s much cuter, funnier, and huggier than a paper and pen to jot down reminder notes on (though I have received this really cool notepad from a friend that has the title “Ta-Da!” that has been helpful in this memory-reviving pursuit). This cuter, funnier, huggier memory jogger is my son, Wil. His memory is a steel trap. What’s kind of funny, but also not (life is full of paradox), is from being an avid country music song lover (and admittedly from his dad having a cold one on a Friday night) Wil has learned to love the word “beer.” Whenever he sees a sign over a bar he reads loudly and proudly, “B-E-E-R! Beer!” At school when they asked him to say a word that starts with “B”, well you know that answer to that one. His paraprofessional texted me his answer to the “B” word with a giggle I guess the “B” word could be worse! So with, Wil, he remembers everything from song words to experiences. I have to really watch what I say. In fact, when he was a baby, my dad sang “You Are My Sunshine” to Wil every time he saw Wil. Wil could sing that song word-for-word in its entirety before he could speak 3 individual words in a sentence.

Back when Wil was about 3-years-old, he would leave things in stores when he got tired and frustrated. Not because he forgot them, but I believe it was some form of rebellion he had control over. We’d be about to leave and he’d yell, “Hat!” And I’d ask him where it was, and he’d walk me to it. And these weren’t small stores. In a Meijer, he’d lead me from the door we were about to exit all the way to the toilet paper aisle in the back. There sitting a-top a 36-ct package of Angel Soft toilet paper would be his hat. Like it was waiting for our arrival. Or we’d weave around the big bags of feed at a Tractor Supply Company, and back behind a large stack, he’d point. I’d almost have to climb up over the stack, to follow his pointer, and there I’d see his hat. He must have tossed it in the air and watched it land at just that exact spot.

I’ve heard of the ability to remember from multiple friends who have kids or family members with Down syndrome. One of my friend’s uncles who has Down syndrome is about my age. He remembers names of acquaintances that those of us with 46 chromosomes would have forgotten about 3 seconds after the handshake. I don’t know the science behind this, but my experience up to this point would tell me it is because our kids, friends and family members with Down syndrome truly value what is important. And when something is deep, down important to us, none of us forget it.

In running a household, there are so many distractions. I do my best to focus on what is important, but oh how those distractions distract thee! Wil and I have this interesting lost and found act going on right now. He remembers everything like it was yesterday, because sometimes it was yesterday: I went to pick up Wil after school. Wil hopped in the car and I decided to put his backpack in the trunk. His sisters were soon to arrive at Wil’s school from their school on the transfer bus. The girls had a friend of theirs coming home with us. Putting Wil’s backpack in the trunk would afford us more room. All went well, loads of giggles in the backseat with three 13-year-old girls. We all unloaded into the house, the girls went to the basement with snacks to play games. I made Wil a snack and he hung out upstairs with me while I made dinner. Soon after, we all headed out, as I took Elizabeth to the track meet, their friend home, and Katherine to CrossFit. This morning, getting everyone ready for school, I was looking all around for Wil’s backpack. I muttered to myself, “Where did I put Wil’s backpack?” I usually unload it then put it back in his room. Wasn’t there. Then, I heard Wil’s voice from the kitchen reply to my mutter, “It’s in the trunk, Mom!” The trunk? And how did he hear me? (Mental reminder: Be very careful what you mutter). Then, ohhhhh yeah….and the memories come flooding back from the years ago that was yesterday after school. (Another mental note: Write down first mental note in “Ta-Da” notebook immediately as you are unlikely to remember first mental note).

Whether it be the missing backpack from yesterday or the missing hat from 9 years ago, Wil remembers both like yesterday. So, with that, my memory issue could be:
A) I am short one chromosome to have a good memory.
B) It really is an age thing.
C) I let the distractions distract me.

I can’t do anything about the chromosomes or the aging, but I can do something about the distractions. This world is really good at throwing distractions at us. This world is not made for us to keep a singular focus on what’s important. It’s so, so easy to get caught up in the noise. But here’s another piece of wisdom Wil shares with me along with his fool-proof memory: when it gets all too loud for him, he puts on his noise-cancelling headphones. Then he can regain his focus and all is right in the world again. Smart kid.

Wil may have cognitive delays, but when it comes down to what’s important, he’s a downright genius! So if you see me wearing a hat, singing my heart out to country music, with ear-cancelling headphones on, don’t think for a second that girl is lost. In fact, I will never be feeling more found in my life! Ta-Da!!!

Gratitude Is A Heart Thing

Gratitude. A word that is being thrown around a lot these days. Gratitude is grand. Even if it is over something seemingly small. Allow gratitude over one small act or experience to grow and expand, and you will find little else compares to the immense joy Gratitude fills a heart with.

Yet, when words are overused, the feeling associated with the word gets lost in the shuffle. The expansion shrinks and the word gets looked over and we are already on to the next.

Gratitude is a heart thing. Gratitude is also immensely personal. When we feel the warmth of the sun after a long, cold winter. That one moment can add a new perspective to our day. Sometimes we don’t even mentally acknowledge this feeling. It’s a heart thing. Our emotions are lifted and we simply call it a “good day.”

There are also the times we stop and allow gratitude to take over. Lifting our heads to the sky, opening our arms, and taking it all in. Yes, Gratitude is a heart thing.

I think I’ve watched the movie “Sing” over 500 times with Wil. Yet, each time he says, “Mom, watch Sing with me?” I say yes. Because I know what’s coming. It’s not at all about the movie, it’s about the entertainment that comes along with the movie. At this point, Wil knows every line of the dialogue and the songs. When one of his favorite lines arrives, he leaps up enthusiastically, throws his arms in the air, and theatrically presents his words in tandem with the characters. He looks over at me with a laugh in his eyes. Then he sits back down until his next favorite part. When a song comes on, he’ll again bounce back up and dance around the room, singing each word. I never grow tired of it over the 500+ times. His enthusiasm is contagious. Now, I could never watch “Sing’ by myself. It would fall completely flat without Wil’s energetic additions.

The same holds true if any Luke Bryan song comes on the radio while I’m driving. All of his songs fall flat without Wil’s back-up vocals. Wil adores Luke Bryan and knows every word of almost every song. He plays Luke’s music over and over and over again. Like we all do, if Wil doesn’t hear a word correctly, he makes up his own. I’m so used to Wil’s made up words, that if I’m in the car by myself and a Luke Bryan song comes on, I’m like, “Luke, you are singing the wrong words!”

Gratitude is an experience more than it is a word. Gratitude is unique to our experience but sharable by all of us.

Gratitude is a heart thing


Let’s Stand for the Special Olympics


Unification. That is a beautiful, strong word. Where does it exist in it’s entirety? The Special Olympics.

And now, a proposal to impose on families the duty of even more fundraising efforts than we already do to keep this program thriving. And what of the families that are already taxed to the max? Everyone misses out. You see, Special Olympics is not just for our kids with special needs. It unifies, strengthens and empowers all involved. Special Olympics reminds us that we are truly special for who we already are. It doesn’t matter what color you are, how many choromosomes you have, if you speak or you sign or both. It doesn’t matter because deep down we all matter greatly. True leadership is standing for what matters for the greater good. Let’s all stand for the greater good. Let’s stand for the Special Olympics.


Yesterday was amazing!

Yesterday was amazing!! THANK YOU to all who supported 3.21 in your own way by donating, running, walking, swimming, biking, rowing, planking and so much more!!! One recurring message I heard in the many stories that were shared yesterday is how our loved ones with Ds show an unbiased kindness and love toward all. The beautiful part is we do not need 47 chromosomes to extend that same open kindness to others and ourselves. Thanks to our loved ones with Ds for showing us the way every single day!! 💙💛💙💛💙💛


HAPPY WDSD!! Can you 3.21 today?

HAPPY WORLD DOWN SYNDROME DAY!!! Celebrate today by doing anything active that adds up to 3.21!! Today I’ll be running 3.21 miles & swimming 3,210 yards for our loved ones with Ds! YOU CHOOSE any activity that adds up to 3.21 (walk 3.21 blocks, run 3.21 miles, bike 3.21 miles, row 3.21 meters, etc). Tag me on social media so we can celebrate together and also include the hashtags #WDSD2019 #RACINGfor321 #TeamNDSS #RUNfor321 Thanks for joining us in celebration today!!! XO
**If you have not donated to National Down Syndrome Society, and still would like to in honor of World Down Syndrome Day, please visit my fundraising link below! A HUGE THANK YOU for your generous donations and support!!!!!!!!

NDSS Fundraising link: