Now one year after Ayden's diagnosis, she has written an update which I think will speak to all parents of children who have survived IB. Thank you Cherie for sharing once more!
"One year ago, I experienced the most earth-shattering event
and was introduced to a disease I didn’t even know existed.
Although I have the most beautiful, HEALTHY daughter anyone could ask for, I have found that the healing process is quite unique.
Not the physical healing, although that came with its own challenges,
but the emotional process.
Not a day goes by that I don’t think about Ayden’s illness.
Not one minute goes by that I am not overwhelmed with gratitude
for her health and for the prayers that embraced our family.
I am appreciative to the doctors who devoted their careers to studying in California about Botulism and indebted to every professional that was involved in her case.
I am humbled by other stories and families
who have gone through this.
I am in awe of the support that pours out to this day.
I am connected to those mothers in a way I cannot explain.
I feel their devotion, their fear, and most of all their love.
I am thankful for those who allow me to talk about it from time to time,
and those who hear about it often.
Although I didn’t suffer the loss of a child,
much of the grieving process is still the same.
I have good days and days that are filled with the “what if’s”.
In some way or another I have experienced guilt, denial,
bargaining, depression, anger and now acceptance.
I have accepted that this was a chapter
in our lives that while not desired,
brought Michael and I closer together, reshaped our faith,
and reaffirmed that our love knows no end for our daughter.
We saw how those who loved us reached out to us and how people we had never met loved our child.
I cannot erase from my mind the picture of a 5 month old,
lifeless baby strapped to a gurney being put into a jet.
I cannot erase the beeping machines and
the sleep deprived hours in the dark,
watching neon letters scroll across screens.
Time and support have healed so much
and we are beyond thankful to have our daughter with us.
It’s a good and healthy reminder that life is precious.
Ayden is precious. The meaning of Ayden is "fire” or “little fire”.
She truly is our little fire! She is precocious and full of life!
We still love looking at her, the same way we did
for hours when she was new.
Not a day goes by that we don’t look at each other
with a huge smile and say,
“did you see that?”
I know that we will always feel this much joy
and excitement in raising Ayden!
We will never stop getting excited about who she is
and what she does.
She is the fire in our hearts.
Today, we celebrate one year of health
and the year of healing that has taken place.
We are thankful to those who have had Ayden on your hearts
and are so blessed by our blue-eyed, crazy curls, wild-child!"
