Today I’m thankful for Mrs. Kris aka “Kiss Kiss.” She’s been KC’s physical therapist since she was about 4 months old. Besides being an amazing PT that truly has a huge heart for kids – Yes, sadly we have sat through a pediatric therapy session a time or two and I’m not positive the therapist even liked children – but in all of KCs time with Mrs. Kris, she has never once put our girl “in a box.” She has never once lead a statement with “well, kids with Down Syndrome typically…” KC has always been a unique individual and Kris has has never stopped trying new things to help KC reach her full potential. Kris has taught KC so much in their time together but she’s taught me a very valuable lesson as well. In the world of “special needs” we’ve seen all kinds of specialist and there seem to be two kinds. There are the ones that look at and treat your child and there are the ones that look at but never get beyond whatever the diagnosis may be. They say things like, “Our kids with …. always need ….” I’m sure to some great extent this logic is true but the specialists that always shine brighter than the rest are the ones that never let you know that they are thinking of anyone other than your child during your time together. You’re not a comparison or a diagnosis and you’re not just another client/student/patient with these amazing specialists. You’re just uniquely you and treated as such. Thank you, Mrs. Kris, for shining bright. Thank you for putting your heart into your job and always pushing KC in her own special way and thank you for setting the standard so early in KC’s life for how we choose those specialist that care for our daughter.
Today we celebrate KCs Heart-A-Versary! We started our day delivering some goodies to the CVICU at Wolfsons for some people that loved us all the way through where we are today. KC was right at home with one of her cardiology dept. faves and a stethoscope.
I’ve written a lot about today but none of the words have seemed right. I had a post started about surgery day a year ago, then one about all my crazy moments leading up to it. There were a lot of those. next I started one about all of KCs growth since last year but I just couldn’t put the words together right.
This is definitely a day to celebrate and we are so grateful for the blessings that have been poured over us throughout her two years of life. but, at the same time, there’s been a lot of loss over the last few weeks in our little community; children’s lives suddenly ended makes celebrating today bittersweet. It makes me question why some journeys go one way and others go a separate way. I’m so thankful that KCs heart is now mended. I’m thankful we don’t rely on oxygen tanks and medications to function normally and any heart parent would tell you, The heart journey is scary and difficult and completely out of your control. We are so grateful and thankful that our journey continues but this year we are extra thankful for those that have showed such beauty and grace and strength and courage when their story didn’t go as planned. The main thing that I have learned over the last year is how truly precious each moment we are given is. I’ve learned that finding a piece of good in an awful situation is a choice that we each get to make. It was good that KCs heart wasn’t able to be plugged in the cath lab because it lead to surgery which lead to finding an extra hole which lead to the beginning of healthy lungs, etc. I learned that the celebration over KCs heart victory doesn’t mean much If i keep to myself and if I’m unwilling to reach out in love to someone struggling with loss or fighting just to hang in there. Today we celebrate mended hearts and changed lives because of those who chose to seek out and cling to the good through terrible times.
“We love because he first loved us.” 1 John 4:19
It’s hard to think about Easter this year without remembering where we were at Easter time last year. I actually dreaded it quite a bit. This would be another holiday our family would spend split apart and heart surgery was scheduled just two days later. KC was on supplemental oxygen and was unable to leave the house. She was also scheduled for a CT scan first thing that Monday morning after Easter in the hopes we could understand why her lungs were struggling so much before open heart. My parents came to our house to sit with KC so we could attend church with our big girls. The possibilities of surgery complications were never more real and I was consumed with fears rather than gratefulness of what this day meant to us.
I took these pics today of this smiling, healthy, supplement oxygen free, WALKING little girl and feel tearful thinking about how far she’s been carried. I feel so thankful for all of the many miracles and blessings and wonderful people that have crossed our path in the last year. I’m thankful that we’ve always know that regardless of where KCs life leads us, we have always had someone greater than us to put our hope in. I’m now grateful for this memory of a time that I once feared and the reminder of how important God’s miracles, especially the ones we don’t deserve, are to our lives.