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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