Time

The most precious commodity in the world is time. I have been keenly aware of time lately. The passage of time, not having enough time, time running out, time spent in pursuit of goals and accomplishments, time wasted, time wished for, wishing to go back in time, time that has come to an end. I guess you can say I've been spending a lot of time thinking about time.

Several scary and challenging events have happened in my family's life lately, and for perhaps the first occasion in my life, I’ve begun to truly feel and understand that we are running out of time. The concepts of "time passing too fast" and "the world spinning faster" were always just euphemisms to me, a way to laugh at or brush off our common predicament: We are mortal. Life is finite. One day we will cease to exist.

Everyone who knows me well will tell you that I have always been an optimist, and despite seeing and experiencing the spectrum of human existence, witnessing births and deaths and all the moments in between, I somehow managed to mentally block the reality that the one I love most will someday run out of time.

In recent months my precious daughter, Kiera, has been fighting for her life. Her seizures have become monstrous and the toll on her body and spirit have been devastating. Tonight as I write this, as on more than one occasion lately during particularly horrible seizures, she appeared lifeless and I thought she had died. Crying and screaming and begging and praying (Please God, not yet, not yet. No, please not ever! Not this way! Please God, take me instead, God have mercy on her, she's just a child! ), God heard my pleas and she came back to us each time. Countless ambulance rides and hospital stays have defined these past twelve months, and reality has finally hit me. CDKL5 syndrome might win this epic battle. It has already claimed so many precious, gentle and pure children. Their families know the pain and grief I never want to experience. And if I am blessed, I won't anytime soon. Yet now I know the possibility is very real. It's tangible. Tomorrow is not guaranteed. Not for Kiera, not for me or any of my loved ones. We simply don't know.

I'm starting to feel scared, and I'm re-examining my priorities. I am up against a clock whose final stroke I am blinded to. I am learning to make decisions about how to spend this time we have together, whether it's several months, or God willing many years and decades. I've spent years fighting and advocating for Kiera and for a cure, for a better life. Now I ask myself how much more time am I willing to give in this pursuit ? Although I’m working hard on behalf of Kiera, this means time away from Kiera and hours and days where my attention is not directly on her. I'm gambling that these efforts will make a difference and her seizures will improve and her life will be better and longer. What if I'm wrong? I'm looking at things through a different lens these days. I want more time to spend with her, next to her, holding her hand, sharing laughter and amazing moments. I want to be there every time she needs me, cradling her and soothing her after a seizure or when she's upset, telling her she's going to be ok and that I love her more than she can ever know. I want to be there every second to soak up every instant, gathering memories and food for my soul. I want to desperately save my daughter’s life, but I equally want to savor my daughter’s life. Is there a balance?

Something happened recently that is helping me sort through my feelings. I've been bothered lately over some hurtful words, and that has magnified my focus on time. In the midst of Kiera's awful seizures and struggles, I was talking with a few very close family and friends, and discussing upcoming plans for holidays and other weekends. They asked me what our plans were and in a morbid offhand, feeling-sorry-for-myself way, I commented that my goal was just trying to keep Kiera alive! It was a rhetorical comment given all that we've been going through. Yet their replies were a punch in the gut, because each one asked me in rather casual ways, "so, what is Kiera's life expectancy anyway?", like they were asking a question about the expiration date of food. One person commented they had thought most kids with CDKL5 disorder would die by the time they are a teenager. Kiera is twelve. Did they realize what they were saying to me? I know my family and friends love me, they love and adore Kiera. I know their intentions were not to hurt me, but yet their words still sting, the cut in my soul still raw because maybe they see something I refuse to see, or maybe it's because they don't understand what I've spent years trying to show them: Kiera's life, no matter how short or long, is the most valuable life in the world to me. She is way "more than", not "less than" other people. She matters in a way no one else can come close. Every breath she takes, every smile, joy and giggle, every thought in her head, every stubborn or funny reaction, every word or gesture, laugh or cry....these are the moments that make up her life, this is her time on earth, and her time is infinitely treasured by those of us who love her. Yes, Kiera’s life is finite, but she is alive now, and every moment we have with her is a gift!

In the late hours of the night when my heart is laid bare and the emotions and fears come flooding in, I cling to God's grace and mercy, and pray that when tomorrow comes, Kiera will still be by my side. Hope and love don't follow a timeline, my love for Kiera transcends time and space and exists for eternity. It doesn't expire or extinguish. Kiera, like her mom, is in awe of the stars and the moon, and we gaze at them every night. I tell her about the infinite possibilities of the universe and the ways that all of us are one, that death does not separate us from each other and that we are all made of and connected by stardust. I tell Kiera, in the world of the cosmos, time is endless. And in her sweet and awestruck voice, she says "wow"! and “oooh”! Kiera is not afraid of time, and she's teaching me what only she can teach me. Life is not measured in the number of breaths we take, but in the moments that take our breath away.

Yes, The most precious commodity in the world is time. As it passes, it can never be retrieved. It is gone forever. When I think about the passage of time for our CDKL5 children and families, we can never get back the time that has been stolen by CDKL5. This reality terrifies me, but it also motivates me to work harder, better, stronger, and the only way to do that is hand-in-hand with all of us affected by this tragic disorder.

I was in Rome last summer and visited the incredible and majestic Sistine Chapel. It is unlike anything in the world and it took my breath away! I thought long and hard about things that are considered precious and have value and worth. And I thought about time. And it occurred to me: If I have a beautiful and expensive diamond or precious stone, and lose it….well, ok, that is pretty bad. Yet, I can always find another diamond. But there is only one Sistine Chapel, and if we lose it, our world will never be the same, as the greatest treasures of that majestic chapel would be forever lost and could never be replaced.

Kiera is my Sistine Chapel. She takes my breath away every single day! Her value and worth are irreplaceable, her light shines like the stars we gaze at every night. May Kiera’s light shine bright here on earth for as long as possible and may Father Time be kind to her.