It’s been a long couple of days. I’ve been hit with bout of insomnia like I’ve never experienced before. I have insomnia often, but usually it just means that regardless of what time I crawl into bed, it’s 2 or 3am before I’m finally able to crash out, but this time was different and I’ve had no sleep at all. The first night I was awake until 3am, the second night it was 5:45am before I finally crashed out. I let myself sleep until 10am to try and make it through the day, but then the third night hit 5am before I finally felt my eyes give away. While I normally push through, I could barely function and finally called in sick but made myself stay awake and then spent the day killing every ounce of energy I had so that my body would finally just collapse on me: I raked the backyard, ran errands with Jess before we picked Lily up, baked cupcakes for Lily’s class, because we failed at Valentine’s Day and the arrival of Spring feels like a much more important celebration. It worked, kind of. I finally crashed out around 11:30pm, but was up and awake again between 2 and 4:30am, but at least it’s a step in the right direction. I had already been fighting a sore throat before this, which has no morphed into a full fledged cold, which means that I feel like total crap, but I’m hoping it will actually be a blessing in disguise and my body will let me sleep to fight it off. I took one last sick day today and am hoping that’s enough to get things back on track.
On top of that, Lily developed an infection around her g-tube stoma and while all g-tube parents have some tricks up their sleeves to get ahead of the skin issues that go hand-in-hand with our kids, this one is stubborn and none of our tricks were working. You can tell that it’s been causing Lily some pain – she wouldn’t let us near the site without pulling her legs up to protect it and swatting our hands away and the tears that come with the saline soaks were breaking my heart. Luckily, our paediatricians secretary was kind enough to find us a spot yesterday and we’re hopeful that this can get cleared up soon. It’s a bit of sad cycle and we’re not always sure how it starts (chicken and the egg if you will): the site is infected and hurts, so Lily rubs at it which, with her gross kid hands, doesn’t help the infection at all and irritates the site more.
So, it’s been a long couple of days and I was feeling a little overwhelmed. And then as I hopped on Facebook last night, I found that several people had linked to this video that has suddenly (and wonderfully) gone viral. I was the video and in my tired and overwhelmed state, it fully made me cry But then, I noticed that I had been tagged in a post by my friend Daniela’s husband, Massimo. I began to read and then the tears started again….
“I am guilty of using this word. I admit it. I’ve used it without regard and I’ve felt terrible. Over the years I have made it a personal goal to stop using it. I’ve done pretty well, with the odd slip up that makes my stomach turn. I apologize when it happens.
We have all seen people with disabilities. They ride our buses, attend our schools, visit our cities attractions, shop, they pretty much do everything that we do.
One thing that strikes me all the time how they always smile! It’s contagious, if you ask me. It’s as if they know something we don’t. And you know what, maybe they do. How else do they smile all the time? Life has challenged them to overcome sometimes insurmountable barriers, and yet, they smile. Perhaps we are the ones that could learn from them. Learn to smile more, not just for ourselves, but for others. Learn to understand that against all odds, we should smile.
I realized a lot when I met a truly special individual during a photo shoot for my son. Her name is Lily and she is awesome. Lily is the daughter of some close friends of ours. She has down syndrome. She has also overcome some pretty serious heart issues.
The important thing is, Lily is here. She lives a happy and vibrant life, she has two great parents, she has friends and a new puppy (who I saw was pretty silly)! Her name graces a Toronto pool and she also has a bad ass playground! She has two of the coolest and loving cousins and she’s even been on television! When you look at Lily and see what she does for those around her, you’ll understand why she smiles. She smiles because the sees all those people smiling right back at her. She knows that she’s in a good place and she’s loved. She may not be able to say it yet, but if she could, she would tell all those people that she loves them too.
The R word itself is terrible. As seen in this short clip, these people are nothing short of amazing individuals. They are full of life. They have been challenged in their lives and they overcome.
Please, stop. Stop using this word. Stop using it describe an event or and item. Stop using it to comment on an occurrence or a song even. It’s just wrong.
We can all smile a little more, especially when someone special smiles at us!”
That’s all it took. One post and it changed my entire outlook of the day. In that instant, I was able to replay the past couple of days and see of the best parts of it:
- I held Lily’s hands as she walked around the gym during our friend Joe’s 6th birthday party – the same way any parent holds their toddler as they’re learning to take their first steps.
- Lily has been eating up a storm at school and her weight, which had dropped and gave us cause for concern, has now jumped again and we’re less than half a pound away from finally breaking 26 pounds
- The spring has finally arrived and we’ve been released: our lawn (now raked) is starting to sprout, it smells fresh and clean outside, and Lily and Lola are both loving spending so much time outside and on the new playground.
- I’ve been reminded about the amazing group of people that we have in our lives. When we arrived at Joe’s birthday party this weekend, Lily was greeted by our friends Jack and Sam, who were so excited to see her and play with her. They offered to take her into the bouncy castle and take care of her, and to just keep her company. Jack is 11 and a budding basketball star, but has the sweetest soul of any person I have ever met and it makes my heart melt and swell each time we see him.
- Lily played in the bouncy castle! With other kids! And didn’t cry because it was overloading her senses, but actually bounced and smiled and yelled and didn’t want to get out.
- Jess has been an incredible support and has just let me sleep when I finally could and has just taken care of everything else.
So, if you need a pick me up, maybe watch this. It’s an incredible video about how using the R-word is never okay, but it introduces you to a man named Paul and some of his friends, who will hopefully drive this point home once and for all. And then think about Massimo’s words and try to be the people who smile….