3,210 yard swim and 3.21 mile run in my crazy socks!!!! For our loved ones with 3 copies of the 21st chromosome! Happy WORLD DOWN SYNDROME DAY 3/21/2019!!! 💙💙💙
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: https://www.classy.org/fundraiser/1825063
This morning before school I attempted to clip Wil’s fingernails. His nails were in definite need of trimming, and Wil is in definite dislike of having them trimmed.
He had just finished breakfast and was watching a video, so I thought it the perfect time as he was happily full and he was somewhat distracted. No such luck. He about had a complete meltdown over one single nail. I managed one more and he was about on the floor in a full-fledged tantrum. So I let it go at that. We spent about 5 minutes hugging to get over it. One negative ripple like that can spread into a wave of a difficult day. The hug did both of us good to rewind and reset on a better note.
Wil is not able to reason with me quite yet, and my being able to reason with him, though vastly improved as he’s gotten older, is still limited. There are some things, I just have to let go. I mean, these are fingernails for goodness sakes. They can live to be clipped another day. But his perception is that I’m forcing him to do something against his will. He was feeling immensely powerless and wasn’t able to fully communicate that with me other than having a meltdown. When he doesn’t want to do something, it doesn’t matter whether it’s trivial like fingernails or monumental like crossing the street. To him it’s the same importance. That’s the toughy.
We’ve had many occasions where he doesn’t want to bring his plate to the sink. I ask him to do so, and he will sit there. Then he’ll stand up and put it on the counter. Nope, I say, the sink. So he’ll stand there. And eventually, little by little, the plate makes it to the sink. It’s actually pretty funny, but when he is in a stubborn mood and I don’t have a half hour, it can get a bit frustrating. Yet other times, without being asked, he’ll bring his plate to the sink, rinse it off, and put it in the dishwasher.
When he’s in these upset moods, I need to back up, slow down, and find out what the source of his upset is. Sometimes I just don’t know. He probably doesn’t even know. It could be one thing or an accumualtion of things. I think we all can relate. However, most of us can be reasoned with. There is no forcing anything with Wil. And in a way, that is the blessing. I’ve learned the the only valuable force in these situations, is they force compassion.
This world is built for our convenience. Technology has been created for experiences to be easy and quick. I mean, we get upset if we have to wait 5 minutes in line! But Wil doesn’t operate that way. It could take 5 minutes just for him to get his dish to the countertop! And as challenging as it can be, I truly believe that’s his gift to this world. It is the gift of Down syndrome. We value convenience much too highly. If things don’t go our way, watch out! Wil, and his friends, remind us to slow down and evaluate the importance of what we are trying to do. To stop forcing and slow down to truly find the deep down purpose of what we are doing. Most times when it comes down to it, stopping everything for a long hug is what truly reboots the day in just the right way.
I just read a very saddening story how a mother’s son was denied certain medical services because her son has Down syndrome. Of course this is discrimination. And just plain wrong. Her point in sharing was that our voices are so very important and powerful. I’m so thankful she took the time to share her story not so we could get angry, but so we could get loud. To be proactive with our voices. That there is still ignorance surrounding the value of our kids lives. Our kids need and deserve our voices to be heard! I’ve always believed our stories need to be heard, even and maybe most importantly, our daily lives. Wil smellling flowers, Wil hugging his sisters, Wil loving on his dog, Wil swimming in the pool, Wil doing his homework. Our lives have certain challenges, but our life really is not that different. What life does not have a mix of challenges and joys? I’ve grown so much in learning to work through the challenges, which elevates the joyful daily moments to new heights. I truly would not change a single moment!
I’m thankful I had the exact opposite experience at Mott Children’s Hospital yesterday. As the endocrinologist walked in the door the first thing she said was, “He is such an angel.” His sisters, who were also sitting in the doctor’s room, chuckled at this because to them he is their little brother! He loves to tease and pester them as many little brothers do. He is both an angel and a little bit of a devil Aren’t we all?! This life is so ordinary and so magical all at the same time.
Never think you have too ordinary of a story to share. The world needs glimpses into our daily lives to erase the fears! Whenever you share a story, whether it be full of elation of a successful moment, or working through certain challenges while holding strong to faith, or a beautiful snapshot of an everyday moment, share it with LOVE. FULLY BELIEVE with all your HEART that the feeling of this moment shared will reach the right person at just the right time. VISUALIZE a mind blossoming open. We have all had our minds firmly closed to certain ideas and then an experience suddenly gives us an enlightening new view. It’s quite a miraculous feeling. Give others that gift with your story. Our loved ones with Down syndrome deserve at least that much. 💙
“Haha, you know he does! But that’s kind of the point. He lives out loud. It’s funny, as we get older, and supposedly smarter, we seem to close ourselves off to living out loud. We get set in our ways and our beliefs. Wil broke me of that, and thank goodness. I think everyone needs those wake-up calls in life to shake them out of their set ways. He shakes things up and makes me look at things in a new way almost every, single day. Do you remember how I called something ‘weird’ the other day? Then you corrected me and said I should use the word ‘different’ instead. I really appreciated that. You said what may be weird to me may not be weird to someone else. It was just their way of doing something that was different from mine. Well, that’s kind of the point with my blog. There is a lot of fear surrounding Down syndrome. Even though in a lot of ways Wil is the same, people fear what is different. And it’s not because it’s bad, it’s just because they don’t understand it. By writing these blogs, I hope to bring some understanding. And more than that, fully embracing Down syndrome. The way Wil lives is very freeing and invigorating. Something a lot of us adults could learn from. This blog is in big part for what Wil stands for. Think of the kids in school. They all love Wil because he doesn’t judge them. No matter who they are, he will readily give them a great big bear hug just because he loves them for who they are. Or how we all know when Wil eats a chocolate donut he says “mmmmmm” out loud with every single bite. It makes it so much more fun to have a donut with him. Or how he stopped in the headphone aisle at Target, put a pair of headphones on and danced to the music. He can make any kind of experience fun, no matter where we are. But as adults we get so used to things and so get bored with life. We get set in our ways and our beliefs, and life gets kind of dull. Wil never, ever gets bored. And he never, ever lets life get dull. If he can do that, then can’t we all do the same in our own way? Wil gives us permission to be free, to have fun, to be who we are in our essence. The irony is, many of us fear Down syndrome, when I think what we really fear is letting ourselves be exactly who we are.”