On April 2, 2008, Mikayla Rae joined the world. She had more hair than I’ve ever seen on a newborn – black and curly – and weighed a whopping 6 lbs. 6 oz. She was perfect.
At her one week check up the pediatrician noticed a heart murmur. She suspected that it was nothing but referred us to a pediatric cardiologist to be sure.
Its funny how we make plans in our lives and we prepare for things to be a certain way and then God says, “Wait!! You forgot that I’m in charge here.” And all our planning and preparation doesn’t matter.
The cardiologist told us that one of Mikayla’s heart issues was a “red flag” for a genetic disorder. He referred us to the geneticist to have Mikayla tested for Williams Syndrome.
Like I said, she was perfect. God created Mikayla for His glory. He created her perfectly the way He intended her to be.
Those first months were tough – to say the least. Most of the challenges we faced had to do with Mikayla’s eating (or lack of). From milk protein allergy to reflux to swallowing deficiency. All contributing to the fact that she wouldn’t eat and therefore wasn’t gaining weight. She didn’t sleep – which means mama didn’t sleep, which just makes everything worse. And, she was pretty cranky. Now that I think about it, she’s always been very good about letting us know when she’s unhappy.
After several months of special formula, reflux medication, thickening her formula and constantly fighting to convince her to eat, Mikayla started improving. At eight months old we started to feel relief and her doctors seemed to relax as well. At nine months she outgrew her protein allergy and her reflux and her swallowing deficiency. All about two months ahead of schedule!
There were many, many days during those first months that I felt like time passed SOOOOOO slowly. We knew from the beginning that the first year would be tough but that it would get better after that. 12 months was sort of the goal or the “finish line” we had to look forward to. During the many sleepless nights or the many days of fighting just to get Mikayla to eat, I thought I’d literally go crazy before we reached the 1 year mark. And now it seems like time has flown by!
Here’s a video of her first year… (I was going to delete this video because I realize no one cares. But then I watched it and she was so stinkin cute I couldn’t bring myself to take it out. So I’m gonna leave it here for me and the grandparents.)
When she was first diagnosed, I scoured the internet for information and testimonials and videos and medical advice but eventually I reached a point where I had to stop doing that to myself…and to Mikayla. Let me explain…
As parents we tend to squish our kids into a mold of what we think they should be. Everyone does it on some scale, we all have hopes, dreams and expectations for our children. We all have an idea of how we think they should be and act and relate to the world. When Mikayla was diagnosed with a disability we were given the opportunity to throw away that mold. Not that we don’t have hopes and expectations for her, but we were given a hefty dose of reality at an early age that she may not be what WE want her to be (ie. astronaut, doctor, lawyer, etc.).
Instead, we now have the opportunity to teach her as much as we can and prepare her as much as we can for a life that GOD has planned for her without the hindrance of OUR plan.
She is our sweet and happy girl who loves milkshakes and hates sleep. She smiles a lot. People, even strangers, are drawn to her in an unexplainable way. She sees more doctors than most kids, but not nearly as many as she used to see. She loves Disney and music and “inflatables” (think blow up Santa) and Christmas. We take things a day at a time and leave the future to One who handles it better than we do.
Parenting a child with disabilities is tough, it can be slow, it can be lonely. But, we have met some amazing people along the way who have been a tremendous help to these sometimes ignorant parents. We’ve learned a lot – about Williams Syndrome, yes, but also about parenting in general and about ourselves and about our friends and about feeding difficulties – and hopefully we’ve reached a place where we can now look back and help others.
I’m thankful for the things we’ve learned and the people we’ve met. I’m thankful for a child who teaches me so much about loving people in a pure and unconditional way, without judgement or prejudice. I’m thankful for this story that God has given us.