Meet Kate. A little girl who is changing the face of beauty.
Words from Kate’s Mom-
The summer before Kate turned two, I posted a picture of our family on the beach in California with the caption “Eighteen months ago, I don’t think I imagined that our life would be this much fun. So thankful I was wrong.” I remember sitting on the beach, watching my daughter walk hand-in-hand with my husband down the sand, and her brother, not quite 4, building castles and smashing them and running into the water and squealing. I was amazed that I was sitting on the beach, doing exactly what I had hoped for and dreamed of before having children. And I was surprised by joy.
As it goes in southern California, it was a very hot day in September, in 2012, when our daughter came rushing into the world. She nearly sprinted out, leaving no time for the nurse, let alone a doctor to even catch her. What was surprising was that as quickly as she showed up, she was whisked away by a team of nurses and doctors, talking in hushed tones. Eventually, as a reply to my repeated, “Is she ok? Is everything ok? What’s wrong?”, a neonatologist with a gentle voice and kind eyes came to my bedside. He spoke softly as he communicated that there were concerns about my daughter’s heart and lungs, and then he said, “Have you heard of Trisomy 21, or Down syndrome?” As he talked through the reasons why he suspected Kate might have the extra copy of the 21st chromosome, things kind of became blurry and I listened as if an observer from outside or above the room—not as a participant.
Kate would be rushed off to a higher level hospital with my husband by ambulance, and I would follow a few hours later—by the grace of God, the speedy delivery meant no meds and IVs and so I was safe to transport to the same hospital. For six weeks in that NICU, my husband and I would sit bedside with Kate—we would rock, and sing, and pray, and cry, and read, and write, and wonder when we might get to take her home to meet her not-yet-two-year-old brother. We would learn her lungs were just fine, but she had two holes in her heart. And I remember sitting there, wondering if our life would be fun, or if it would be a serious, sort of sad, and pretty tough new life. The hope for Joshua having a kindred playmate so close in age seemed dashed. And my ideas of what a happy little family of four would do seemed tossed to the waves. I didn’t think life was over—but I did think it would never be the same, nor would it be what I had dreamed of.
Well, she’s only four, but I can say that I was right about that last part—our life would never be the same, nor what I had dreamed of. But that day on the beach, and the realization that our life was full of joy was the beginning of seeing that our world had expanded a hundredfold because God gave us Kate. Our life is much more like most of our friends—we go to the beach, we take family vacations, we have siblings who fight and make-up and then go back to arguing. Sure, there are more obstacles and processes and paperwork and specialists. But because of Kate, God gave us new eyes to see beyond the artificial limits we placed on our life and how it needed to be lived. We have taken more risks and tried new things and lived season by season and made friends we would have never known– gosh, has God used Kate to open up the world to us.
She’s a persistent and determined little girl, every bit as sassy as she is cute. She loves to bake. She belts out songs at the top of her lungs—off key, but full-hearted, nonetheless. And depending on her mood, she might give you the cold shoulder, or, she might greet you with the most enthusiastic welcome you’ve ever encountered. She’s in preschool with typical peers and loving it. Her speech is exploding right along with her attitude. We have dreams of college for Kate–and perhaps her own bakery! But beyond that, our deepest desire is that she will know how much she is loved–created in the image of God, and made to live in community. To be a friend and to be loved by friends. I don’t know what Kate’s future holds, but if these first 4 years are any indication, this will be an adventure I wouldn’t want to miss.
As a note, a few of my favorite resources for new parents of kids with DS are:
* Bloom, by Kelle Hamton – raw memoir of her daughter’s birth, and the first year, and the community that surrounded them. Her blog continues the story at kellehampton.com
* A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny by Amy Julia Becker – another great memoir, told a little differently, and incredibly impactful. My husband found this one to be the most meaningful. Both working in academia, my husband I could relate to the shift in perspective about ability.
* Ruby’s Rainbow – A scholarship organization that raises funds to provide scholarships for individuals with Down syndrome to go to college. I had no idea that my daughter can go to college!