Quin and I, and our entire family, are in such gratitude for the blessing of time, love, and humbleness we have felt in Sienna’s short life. From her innocent, loving, and peaceful eyes, to the outpouring of love, generosity and blessings from friends, family, and total strangers…. the canvas of pain and anguish is painted with glorious colors and I’m experiencing a depth of emotions that I have never known.
As I’ve continually sought some sort of “message” from God about this astoundingly surreal process, the only words that have come are, “Trust….and I will show you the way.” So those words echo in my heart and mind every second of every day. And I face each moment with just enough light for the step I’m on (thank you for sharing this with us, Sharolyn).
Avery Rose continues her strong fight and her vitals are holding strong. Last night while we visited, she was asleep soundly on her belly in a little pink hat, and grasped her Daddy’s finger strongly with her right hand. Every time he started to pull it away, she would only hold on tighter. Her perserverance and continued signs of immense courage and strength allowed me to smile last night as I watched her gripping her Dad’s finger, as if to comfort us both. Although she has yet to open her eyes, she has long blonde eyelashes that melt your heart. Despite the surroundings, I only see beauty, purpose, and potential when looking at her.
We understand that there is still a very long journey for her to be able to travel out of the NICU, and much about her future is unknown. From world-renowed specialists, we’ve heard the words, “we really have no way of knowing her future…” However, as her parents, our instincts tell us that she can be a success story, that she can be one of the children who defy the odds, and one of those amazing vibrant children that were given harsh diagnoses at early ages, that we’ve heard so many positive stories about from kind people over the last few weeks.
As long as she shows us that she wants to fight on… and God’s will allows her to stay with us….we will warrior on, find the strength to visit and comfort her for countless hours, and believe in her every second. We humbly ask for your continued prayers for her strength in every moment, for wisdom and commitment for those that care for her, and peace and strength for our family.
Each and every one of you that have found your way to this site are cherished and very important to this story. Trust that you have been brought to these words for a reason and allow our vunerability and the very raw sharing of our story to open your heart to deeper love. May it help you to notice the sacred in the ordinary, to see your own children in a new light, to deepen your faith and strengthen your family, and to look for our angel Sienna’s “artwork in the sky.”
Just Enough Light for the Step I’m On (written by Stormie Omartian)
Sometimes only the step I’m on,
or the very next one ahead,
is all that is illuminated for me,
God gives just the amount of light I need
for the exact moment I need it.
At those times I walk in surrender to faith,
unable to see the future
and not fully comprehending the past.
And because it is God who has given me
what light I have,
I know I must reject the fear and
doubt that threaten to overtake me.
I must determine to be content where
I am, and allow God to get me where I
need to go.
I walk forward,
one step at a time,
fully trusting that
the light God sheds
is absolutely sufficient.