You know one of the things that was probably the scariest when we first found out we would have a child with Down syndrome was not knowing what that really meant for us or what the future looked like. As a parent, you’re filled with questions all the time. Perhaps with a second or third child, the number of questions drops, but when you add something that is not “typical”, the number of questions you suddenly have multiplies quite drastically. Not knowing who you can go to makes you feel quite anxious about it all, but after getting the diagnosis and doing some searching, it didn’t take long to find a community of other parents, at different stages of their journey with their own children with Down syndrome. Suddenly, you know where you can go to ask your questions, and you’ll get answers from people who have been there. You have a support network that you didn’t know existed and you no longer feel alone with your child and their diagnosis.

But that’s not actually what my blog is about. This week, I have a story that is not my own. It is the story of another parent from this community of parents with children diagnosed with Down syndrome. While browsing Facebook just the other day, I saw this post. I often don’t read a lot and just scroll, but there was something that made me stop and read this one. I immediately knew I had to share, so with permission from the poster, here it is.

It was one of THOSE days. The ones whispered about in the parking lots after a mom and me play group. The ones that have you dreaming of a glass of gin or wine at morning snack time, but compensating with potato chips and chocolate instead. The ones where they take and take and take and there is simply nothing left to give.

It was a day that left me touched out, exhausted, completely physically, emotionally, mentally and spiritually spent. The two and a half HOURS it took to get this precious little miracle to sleep tonight, left me broken and sobbing on the shower floor for 30 minutes after I laid her exhausted and spent, but finally sleeping body, on her bed.

It was a day spent begging her to eat, knowing if she didn’t she’ll be up at 1am starving (who am I kidding, this kid is almost 3.5 years old and I can count on two hands the number of times she’s slept the entire night; so I’m expecting tonight will be a minimum of 3 visits. Last night was 6 visits, with a 2 hour rave from 1-3am)!

It was a day of gentle parenting through gritted teeth and a clenched jaw, reminding myself that this beautiful girl is a miracle and I love her so much. It was a day of shouldering the burden and frustrations of a still non-verbal 3 year old, who so desperately wants to communicate with me, and is shattered when I can’t figure out what she’s saying.

It was a day where I continually had to step out of my “mom shoes” and into my “clinical teacher/psychologist shoes” in order to remind myself that all these behaviours are developmentally appropriate for a 3 year old (and celebrate the fact that I can use the words “developmentally appropriate” for my kiddo!)

But today, I didn’t love being a parent.

Today, I wanted to run away from it all.

Today, I forgot to remember how big the world is for my girl; how loud and scary at times; how frustrating and demanding, too.

And amidst the growing frustration and exhaustion that built into the evening, I forgot about this special moment that my girl and I shared earlier.

So I share with all of you, a HUGE breakthrough for my sassy-pants girl: A game of Patty-Cake. We’ve tried for ages to get the clap pattern right, and tonight it clicked. You’ll see some of her lovely signing, too.

And so, on a day where I don’t feel proud of how I parented or even mentally ready to tackle tomorrow, I can at least smile and cheer on my sassy-pants for playing Patty- cake with me.

Along with the post was the most adorable video of a beautiful girl playing Patty-Cake with her mum and signing along with the words. And what followed after the post was comment after comment of encouragement, support, understanding and most of all love. Love for the parent, and love for the daughter.

Why am I sharing this story? There’s a few reasons:
1. To show that there are others out there, working hard, and doing their best, fighting for their children with Down syndrome and working hard with them to allow them to grow.
2. For another perspective on parenting a child with Down syndrome. It’s enough for me to say the sometimes difficult is worth it, but to hear it from others makes it stick that little bit more.
3. To share that there is so much support and love for these kids and their families.
4. To remind us how important it is to “FIND THE JOY” in every day.

I am going to focus on the fourth point about Finding Joy.

We’ve all been there, where we’ve had a day just like the one experienced here, where we just want to give up, curl up in a ball and hide from the world. Looking for just a moment of peace where everything is good and fine, nobody needs us, nobody is being difficult and life is perfect. Let’s face it though… life isn’t perfect. Life is what we make of it. If we want to focus on the difficult times, we can, but if that’s what we focus on, that’s what we see day in day out. We don’t see the good, we don’t see the happy moments, and we don’t see those moments worth celebrating.

By seeing only those less than perfect moments, we also forget to see the world as others see it. We become very ‘me’ focused, focusing only on how we feel and why it’s so terrible for us, and forget about the people around us. I don’t think living a ‘me’ focused life is all that rewarding. Like this parent has said, she forgot for a time to remember how big the world is for her little girl. Imagine if she did this all the time. Imagine if she never stopped to think or look back. Life would only become more difficult not only for herself but for her daughter too. The world is a scary place. I’ve lived in it for more than 30 years, and there’s still things that scare me. (Ask me about the bat we discovered flying in circles over our bed in the middle of the night… that was scary). Imagine being a young child, that’s unable to communicate well, that is still learning and is still so small around a world of big things. Put yourself in their shoes and maybe the attitude or the issues would make just a little more sense. Kids are still learning how to deal with fears and new things. They need to learn, I’ve said it before, they need discipline, but they also need understanding.

So instead of putting our focus in these bad times, we need to look for the joyful moments. It’s hard to do in the midst of a difficult moment but at the end of the day, we need to look back and find that joy. We need to find those moments in the day that weren’t difficult, that were something to be celebrated and we should celebrate them. Even if it seemed like the day was a mess and that small joyful moment does seem tiny in comparison, it was still something to be happy about. Something that can make all the work and effort of the day worth it. Something that you can look forward to for tomorrow, so you don’t go to bed dreading and fearing for the worst, but hoping for more of those moments.

Among what seemed a terribly difficult day, this parent found that joy. She found that moment that made the day perhaps not so bad after all. She stopped and reflected on her day, even shared with friends and followers on Facebook. As she said, she wasn’t necessarily proud of how she parented or ready to tackle the next day, but she found a moment in her day, that she could celebrate and showed how proud she was of her daughter. And that’s enough. She can go to bed with a smile, knowing her daughter is growing and learning. And when tomorrow comes, that’s what she will take with her. That’s what she will aim for. More of those moments.

When you think about it, it’s amazing how much focusing on those moments of joy can do for you. I work in an online marketing company, and all of our weekly meetings start with good news or gratefulness. That means every team member shares something from their week, or just in life, something that was good, something that they are grateful for. Why? Because often in meetings, there’s a lot of discussion of issues, but the tone of the meeting is set within those first few moments. If we went straight into the discussion point, I’m pretty sure we’d all leave those meetings defeated and likely dreading the next meeting. I shared just the other day that I was grateful that each day is a new day to be better than the last. I’d had some terrible days, but I knew better was possible, because I’d seen it and I’d celebrated it.

So, stop and reflect. Find the joy! Find the patty-cake moments. They’re there if you look for them.