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Celebrating those with Down Syndrome

Ready to try the first of their kind clothes made just for kids with tubes?
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We thought we had done all we needed to prepare for our daughter. She was the 4th child between my husband and myself, how hard could it be? The day she was born started out as expected, labor and delivery were lightning fast. As they wheeled her away to the nursery we thought nothing of it. She would be back soon all fresh and clean, ready to be snuggled and loved on. She didn’t come back right away, we were shuffled around between nurses and doctors. Nobody wanting to tell us what they suspected. By the time I dressed and went on the hunt for her I was met with frantic faces. A cart being rushed in from cardiology. A baby hooked up to monitors and oxygen. What the heck was going on?

Our rushed morning went in to slow motion. Finally someone came to deliver the news, “I’m sorry to tell you this, but we think your baby has Down Syndrome”. Fast forward to a few dozen doctors appointments, lab work, cardiology visits, and the lists of things the “experts” tell you that your child will not be able to do. She wouldn’t walk, talk or eat on her own, at least not until she was 3. She was going to need a lot of help, therapies and interventions. 

Challenge accepted. As it turns out it wasn’t really that scary. It wasn’t the worst case scenario we were braced for. Her diagnosis wasn’t the scariest news that any parent could hear. Instead our daughter has become our hero. At 5 months old and weighing 9 lbs she had open heart surgery and was back home in 3 days. She struggled through 6 months of colds, coughs, flu’s and other viruses, and still found the energy to give grown men a fight. In her defense she doesn’t know they’re just trying to help, anyone who wears a mask and gloves is a little scary. She is the first to greet someone as they enter our home. She’s the last to say goodbye, maybe even give you knuckles. She is the beam of light making everything fun and a little more bearable on the bad days. Hearing her infectious giggle as she’s running across the yard with her eyes closed, you can’t help but smile. Her little voice yelling “whoa” as we turn a corner in the car makes any car ride instantly fun. I mean who doesn’t want to play a hiding game while I’m trying to get out the door? Well, maybe that’s not so fun.

It takes her longer to do things, almost everything. But when she masters that new skill we celebrate it more. We still have a lot to learn, a lot of obstacles to overcome. But those are milestones we know she will reach in her own time. One day she is struggling with taking steps and a few weeks later she’s twirling across the floor. Like most things in her life there is no rush and plenty of time for play. She’s teaching us to slow down enjoy the journey along the way. We celebrate Kay-Lyn every day but today is the day every year we tell the world how special she is. As are all people with Down syndrome.

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2016 Step Up for Down Syndrome Walk

MG_20140928_101420It’s that time of year again! Our team is registered and ready to start raising awareness and money.  This year will be even more exciting for us, we’re going to bring along some floovee clothes and show people what they’re all about. If you’re interested in joining our team you can register as a walker, a virtual walker, or make a donation in any amount.

Here’s a link to our team fundraising page

http://www.stepupdenver.org/KayLynsLight

From there please take a look at the Rocky Mountain Down Syndrome website and see some of their great programs starting from parents first receiving a diagnosis to advocacy for adults. They were a help for us personally when first moving back to Colorado and needing to get ready for heart surgery. They are an awesome resource for parents locally.

More info, progress updates and pictures to come!

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Our journey begins

Welcome to my page and thank you for taking some time to read my first ever blog post. My hope is that you enjoy my chaotic and spontaneous life as much as I do. I am a mom of 2 boys 19 and 5 and a 3 year old daughter with Down syndrome. I’d like to share some of our journey, our ups and downs, our humorous moments, and my big idea of starting a business. My daughter was the inspiration behind the business, I couldn’t find clothes specific to kids on oxygen. I’ve been in the process of perfecting my product for a year now and I’m officially ready to launch.

But where do I start? There are a LOT of options for me to open an online store, but I feel like I spent too much time sourcing materials with really awesome prices, and would have to increase my cost to cover the 5 to 10% fees those sites charge. Plus having a child on oxygen sometimes means they have other health issues and those are a huge drain on finances. Website building 101 here I come.

I should probably stop talking about it and get to it. More posts to come on the progress of that. I’ll also be starting my annual fundraising for Rocky Mountain Down Syndrome, just as soon as I register our team for the Step Up walk. Most importantly more Floovee updates. I have 15 yards of fabric, 600 snaps and elastic ready to be made in to something pretty awesome!

 

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