Today, is Kennady’s birthday! She turns seventeen years old!

What an absolute miracle.  I (robin) remember, when she was 2 days old, standing in a cold, dark room at Brackenridge Hospital listening to a brain surgeon review her MRI results.  He said, “These results are much worse than we expected. Her condition is Alobar Holoprosencephaly, and her brain was not properly formed.  Her life expectancy is 2 to 18 months.   You can have a surgery to help her pain and comfort level, or you can simply take her home and enjoy her while you have her. It will not solve her problem or prolong her life much.”  Kennady living for seventeen more years was absolutely not foreseen. We had the surgery performed (a shunt to relieve pressure), and we took her home from the hospital six weeks later.

We had the mindset that we were going to love and care for our daughter no matter what. She was our baby, and she deserved the best care, love, and attention we could give her.  Our family, friends, and church rallied around us.

Days turned into months and months into years.

The years have not been successful in removing the fear of an early death.  Instead, every time Kennady has gotten the flu or pneumonia, our minds and hearts go to one place: “is this ‘the one’? Is this when she is going to die?”  It is really exhausting to constantly be thinking…“is my daughter going to die this time?” Since it was pronounced over her that she would die in just a few months, we lived in this really weird, guarded place.  We love her dearly, but at the same time we were guarded. We knew we would not have her for long.  We never anticipated her going to school, or hitting puberty, or becoming a young lady.  There has always been this strange feeling of being ready for death.  We have lived in a perpetual state of being ready for her to die.  We are connected to dozens of other families across the country who have kids with the same diagnosis.  On a regular basis, we see Facebook updates where one of them has passed away.

Honestly, I have wrestled with this part of her life so much.  A few years back, I started realizing that she was going to live longer, and that we didn’t need to live with death as eminent as we thought.  God obviously had different plans. At the same time, I don’t have the opposite thoughts and feelings like, “Kennady is going to live a long time! I don’t ever need to think about a shorter life span!! We can go through life like normal!”  It is somewhere in the middle like, “Let’s enjoy today. I don’t know what is going to happen next week. Thank God for where we are right now…”

The more I have learned that lesson of daily gratitude mixed with the reality that life isn’t predictable, the more I have applied it to other parts of my family and life.  I really think it is a way to anchor our hope in God and not in the words of a human prognosis. Not just a doctor’s prognosis, but anyone’s.  I think we spend so much time in fear of the future that we foster emotions God doesn’t want us to experience.  At the same time, we can put all our hopes on a future that is free from pain and death, that we foster emotions that God doesn’t want us to experience when those things happen.  I wish I could say that I flawlessly approach life in the perfect rhythm, faith in God, and appreciation for today.  That is why I have you in my life, my church, my family. To walk through these discipleship moments and hopefully mature in my faith.

So.. back to today… Happy Birthday, Kennady!