Shortly after Mailia’s diagnosis of Eisenmenger’s syndrome in 1999, while frantically searching the internet for other’s with her condition, I came across a family from New Brunswick Canada whose daughter Ashley…had also been diagnosed with Eisenmenger’s. Her mother Gerri, was a Godsend to me. She conversed with me via phone and wrote poetically, about her children and their journey.
In her last e-mail to me, one I have hung on to for over 10 years…she wrote me a poem that a friend had given to her when her kids were first diagnosed and she was feeling really down…
I know that you are feeling
disillusioned now.
But life has a way of balancing
the sorrow with the joy.
the disappointment with the hope.
the emptiness with the meaning.
Someday, my friend, you will
look back on this time
in your life
As a period of learning, growing
and discovering
your own strength.
Until the sunshine comes back
into your life
Remember…
I am your friend,
And know…
I really do care.
I have kept and cherished this poem and recited it to myself countless times. But I have also held a special place in my heart for Ashley and her family and a connection that is difficult to describe.
A few days after the Tri City Herald article came out for Mailia’s Miracle, I was reflecting and questioning our path forward. Had we done the right thing? How could we ask for help for our daughter and not feel the apprehension of not feeling worthy or deserving of wanting our daughter to be healthy and healed. I apologized to myself for thinking these thoughts and felt, no matter what…we would do everything in our power to help our daughter.
While pondering these thoughts…I got a feeling or urge to head to my computer to google a phrase that I am not sure, of its origins…but now can confirm, it was divinely sent. I typed in the words: Eigsenmenger’s Girl. To this day…I am stunned and awestruck at what I was driven to do. The first post at the top of the page was a blog titled Confessions of a Girl with Eisenmenger’s. Sunday, July 12, 2009.
It is my hope that you will google that phrase or click here to be directed to Ashley’s blog post. While reading it…I had no idea it was Ashley as she signed and posted her name as Scooter.
When I read the last paragraph she wrote, I got very excited and tried to communicate with her through her blog…but it kept bouncing me out. I wanted to tell her that YES! She was not alone and that we could empathize with her…and guess what? A possible miracle for her as well…for I could not wait to tell her what we have found through years of waiting and praying…that stem cell therapy in conjunction with the heart being repaired…was now being validated as a means to treat and possibly cure Eisenmenger’s.
That evening, while watching a baseball game with Mailia’s favorite team, the Tri City Dust Devils…I continued to read and share Ashley’s blog with my family and friends, thinking how I was going to contact her.
But by early morning, something that I had read over and over struck a cord and jarred my memory. Didn’t Scooter say she was now 27? Did she not reference the fact that she had started lung bleeds when she was 16 years old? How coincidental…that my friend Gerri had told me in her e-mail back in 1999 that her daughter Ashley had been having lung bleeds…and also told me the same story as I had read in Scooter’s blog…that her brother was also diagnosed with a hole in his heart that was repaired early on.
That was it…I had to find Gerri’s e-mail and quickly phone her to confirm if this was Ashley. Sitting next to our computer is our file cabinet which has been the home to this e-mail correspondence for over 10 years. It has always been within reach…and have called Gerri on a couple occasions to check in but now, this was going to solve this once and for all.
I called and remember asking “is this Gerri” ? A yes came…and I said “This is Andrea Goforth from Pasco Wa., Mailia’s mom…I just wanted to call and say hello and visit with you about Ashley.
She told me they had just lost Ashely…that she died July 31st.
I was in shock. I could not find words…only tears. As I listen to Gerri cry and speak of Ashley…I know she found comfort in knowing why I had called her in the first place. Because of Ashley. That is the only reason I can possibly give logic or validation to.
Gerri told me she had been praying that someone would contact her about Ashley. I said I felt in my heart that Ashley wanted her to know she was okay. My questions and feelings were…why now? How did this happen?
The answer came this last week, as I was headed out the door to San Francisco to seek my own answers concerning Mailia’s future miracle. I got a card from Gerri with a gorgeous photo of Ashley…in her graduation gown, beautiful smile and auburn hair like Mailia’s.
Andrea…
I am so glad that you called the other day. This last month has been so hard for us. Ashley was such a huge part of our lives. We did so much for her that she could realize her dreams, that now I feel very lost.
She was a girl that taught us much more than what we taught her. She enjoyed her journey through life. Never taking anything for granted. She celebrated all of her small accomplishments and never looked too far ahead. She left her mark on everyone that she met. Please keep in touch!!
P.S. Last night I said a special prayer for your daughter and I know that Ashley will watch over her. May God bless her!
Love, Gerri
That alone…her statement that Ashley would watch over Mailia is a testament to the power of faith and love…yes I know Gerri…Ashley will always be apart of our lives and the divine connection will always be there. Thank you!
To Ashley…all our love and gratitude sweetie. You will forever be in our thoughts and hearts. It is our hope that your story will be carried throughout time. You are not forgotten…you will never be forgotten.
In her last e-mail to me, one I have hung on to for over 10 years…she wrote me a poem that a friend had given to her when her kids were first diagnosed and she was feeling really down…
I know that you are feeling
disillusioned now.
But life has a way of balancing
the sorrow with the joy.
the disappointment with the hope.
the emptiness with the meaning.
Someday, my friend, you will
look back on this time
in your life
As a period of learning, growing
and discovering
your own strength.
Until the sunshine comes back
into your life
Remember…
I am your friend,
And know…
I really do care.
I have kept and cherished this poem and recited it to myself countless times. But I have also held a special place in my heart for Ashley and her family and a connection that is difficult to describe.
A few days after the Tri City Herald article came out for Mailia’s Miracle, I was reflecting and questioning our path forward. Had we done the right thing? How could we ask for help for our daughter and not feel the apprehension of not feeling worthy or deserving of wanting our daughter to be healthy and healed. I apologized to myself for thinking these thoughts and felt, no matter what…we would do everything in our power to help our daughter.
While pondering these thoughts…I got a feeling or urge to head to my computer to google a phrase that I am not sure, of its origins…but now can confirm, it was divinely sent. I typed in the words: Eigsenmenger’s Girl. To this day…I am stunned and awestruck at what I was driven to do. The first post at the top of the page was a blog titled Confessions of a Girl with Eisenmenger’s. Sunday, July 12, 2009.
It is my hope that you will google that phrase or click here to be directed to Ashley’s blog post. While reading it…I had no idea it was Ashley as she signed and posted her name as Scooter.
When I read the last paragraph she wrote, I got very excited and tried to communicate with her through her blog…but it kept bouncing me out. I wanted to tell her that YES! She was not alone and that we could empathize with her…and guess what? A possible miracle for her as well…for I could not wait to tell her what we have found through years of waiting and praying…that stem cell therapy in conjunction with the heart being repaired…was now being validated as a means to treat and possibly cure Eisenmenger’s.
That evening, while watching a baseball game with Mailia’s favorite team, the Tri City Dust Devils…I continued to read and share Ashley’s blog with my family and friends, thinking how I was going to contact her.
But by early morning, something that I had read over and over struck a cord and jarred my memory. Didn’t Scooter say she was now 27? Did she not reference the fact that she had started lung bleeds when she was 16 years old? How coincidental…that my friend Gerri had told me in her e-mail back in 1999 that her daughter Ashley had been having lung bleeds…and also told me the same story as I had read in Scooter’s blog…that her brother was also diagnosed with a hole in his heart that was repaired early on.
That was it…I had to find Gerri’s e-mail and quickly phone her to confirm if this was Ashley. Sitting next to our computer is our file cabinet which has been the home to this e-mail correspondence for over 10 years. It has always been within reach…and have called Gerri on a couple occasions to check in but now, this was going to solve this once and for all.
I called and remember asking “is this Gerri” ? A yes came…and I said “This is Andrea Goforth from Pasco Wa., Mailia’s mom…I just wanted to call and say hello and visit with you about Ashley.
She told me they had just lost Ashely…that she died July 31st.
I was in shock. I could not find words…only tears. As I listen to Gerri cry and speak of Ashley…I know she found comfort in knowing why I had called her in the first place. Because of Ashley. That is the only reason I can possibly give logic or validation to.
Gerri told me she had been praying that someone would contact her about Ashley. I said I felt in my heart that Ashley wanted her to know she was okay. My questions and feelings were…why now? How did this happen?
The answer came this last week, as I was headed out the door to San Francisco to seek my own answers concerning Mailia’s future miracle. I got a card from Gerri with a gorgeous photo of Ashley…in her graduation gown, beautiful smile and auburn hair like Mailia’s.
Andrea…
I am so glad that you called the other day. This last month has been so hard for us. Ashley was such a huge part of our lives. We did so much for her that she could realize her dreams, that now I feel very lost.
She was a girl that taught us much more than what we taught her. She enjoyed her journey through life. Never taking anything for granted. She celebrated all of her small accomplishments and never looked too far ahead. She left her mark on everyone that she met. Please keep in touch!!
P.S. Last night I said a special prayer for your daughter and I know that Ashley will watch over her. May God bless her!
Love, Gerri
That alone…her statement that Ashley would watch over Mailia is a testament to the power of faith and love…yes I know Gerri…Ashley will always be apart of our lives and the divine connection will always be there. Thank you!
To Ashley…all our love and gratitude sweetie. You will forever be in our thoughts and hearts. It is our hope that your story will be carried throughout time. You are not forgotten…you will never be forgotten.
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