One year later, a Mother Remembers..

When I was creating the infant botulism blog and requesting stories from other families, I received an e-mail from Cherie G. containing a letter she had written to her daughter, Ayden, when she had contracted IB in November 2011.
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!"