Ellie Kate would turn 18 years old on December 4th. It's just so hard for me to believe! I've felt led to share the struggles and feelings which come with this type of grief and celebration - the beauty and the ashes . . . I hope I am able to express effectively, although I know my words will be raw, and the pictures I paint won't all be cozy and warm.
Life isn't always cozy and warm, even for the Believer, is it? God doesn't promise us a cozy, warm and safe life - quite the opposite, actually. Look at the lives (and deaths) of the original Disciples. Look at the many martyrs who gave their lives (while living and dying) for the sake of Christ. No, life is not meant to be easy, and we need to remind one another that is okay.
The first thing I want to share is, when I think of Ellie Kate in the immediate, I think of a healthy, gorgeous, talented, happy, girl who is full of life! In my immediate thoughts, I think of EK as an almost 18yo - a typical senior in high school, and all the fun things that go with that. I think of senior pictures; I think of posting photos for "Senior Sundays" on social media and I wonder what her senior photos would look like - what would she have chosen to wear? Would she be a softball player or a dancer, a cheerleader or on the debate team, or would she try to do it all? I don't know, but I've found it fun to dream about.
The second thing that comes to mind is my seven-year-old little girl - that gorgeous girl, full of personality, who suffered so much on this earth due to NKH, this rare and random genetic disease which struck our family, twice. I hate that my daughter was born with a diseases, especially something "inherited" from both my side, and Mike's side, of her family tree. I hate that she found comfort being in the hospital because it was so familiar to her. I despise the fact she couldn't I hate that my eldest daughter road the special needs bus and was placed in a classroom I never knew existed before NKH struck. These, of course, are things a parent never hopes or dreams of for their child . . .
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Ellie's life, even though riddled with struggle, opened a WHOLE new, unspeakably beautiful, previously unknown world which has become so very precious to us. This life has given us mission, hope, drive, compassion, and has taught us about a reckless love we otherwise would not have known about. It has all opened us up to a world of people so often forgotten and neglected, and for that I am eternally grateful.
I'm so very thankful for the many nurses who became dear friends to me, sisters even - who became dear, trusted and beloved to Ellie Kate. I am thankful for the many doctors we've had the privilege see walk in and out the doors of OU Children's and others, cheering them on as they exceeded as students, interns, doctors, and now specialists. I am thankful for our Sooner Start family who made me feel "normal" from the first time they entered our hundred-year-old house; I treasure those women; they became my friends and confidants. I am thankful for our precious outpatient therapist, for the love, acceptance, patience, and knowledge - I would have missed out on so much life if it weren't for you! I am thankful for the servant-hearted teachers, bus drivers, therapists, and helpers who ensured my Daughter was safe at school and felt loved every day she was there. For our many home health nurses, who've become part of our family . . . a servant-hearted group I never knew existed until EK - they have shown me sacrificial love and love in-action in ways I would otherwise have never understood. I am thankful for OKC Hope Link, the non-profit started in honor of Ellie Kate - something that grew and moved in ways only God could have planned and ordained. The friendships, the ministries, the reckless love lessons taught, the fellowship and sisterhood . . . it's too wonderful to describe!
I am thankful for our NKH Family around the world, which started in a small chat room (didn't have social media back then), for the thousands of words of encouragement I've received, for the wisdom, guidance and practical advice given to me by those who've gone before. These friendships with people from all faiths and backgrounds - are precious connections I would not otherwise have. We are bound by genetics, by tragedy, by sorrow, and the constant threat of death and all that follows; somehow, that brings life, comfort and so much more. If not for Ellie's unique life, I would never have this family - I would never get to experience so many highs and lows of the most intimate, incomparable, sometimes incomprehensible magnitude! For that, I am grateful.
In honor of Ellie Kate's 18th Birthday and in honor of her upcoming Heaven Day (December 23rd), we are raising funds for "Ellie Kate's Wish", a program for NKH families around the world. Families with specific needs are encouraged to sign up for this program and this year, we need your help to meet as many needs as possible.
You can join us in securing the needs of NKH families by giving HERE .
Thank you for indulging us by celebrating EK's life and for giving in her name.
With Hope,
Ryan
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