These stories were included within the following cover
Tyra's story was also found on these pages and in my heart and mind are the stories of Paige, Mary, Autumn, James, Katie, Samantha, Heather, and just as a flower was placed on Sunday to represent the names not mentioned so I have placed this space for the many other stories being carried in the hearts of those left here on Earth.
AI duPont held it's Day of Remembrance on Sunday and I had the privilege of sharing the Parent Thoughts as part of the Service. I debated posting the words I spoke on that day as the intended audience is not one I'd invite others to join. However, some of My Circle were not able to attend and I also want our duPont family that were not present to receive their well deserved Thanks. I did not take this opportunity lightly and hoped beyond hope that others might find some comfort and companionship on this journey of ours. Each story is precious to me.
REMEMBRANCE
SERVICE ‘TALK’
Good Afternoon. My name is Nicole - my preferred title and one
of the things I enjoy most about returning to
duPont is to be introduced as Tyra’s mom. It is truly an honor to have the
opportunity to share with you all on this day. My first encounter
with this Service and perhaps unknowingly with some of you was on
October 26, 2008. My daughter, Tyra, was still very much alive at
the time.
We were 4 weeks into a 6 week unplanned
inpatient stay, and on that Sunday afternoon, not unlike many other
afternoons-mornings or nights for that matter, Tyra and I were
walking about the hospital. As we walked through the lobby I was
surprised to see so many people gathered. When Tyra and I returned
to the floor I inquired as to “what was going on downstairs?”.
One of the nurses then explained the Service to me. Our 4 weeks
seemed so minor at that moment.
My heart ached at the thought of losing my own child
and the pain each of you must have felt. Never would I have thought
that the following October I would be sitting among you. There are times today that I still don’t believe it.
I recently came upon an email dated October 24,
2008 – the Friday
morning before that service. The message was to
Tyra’s teachers and friends. It explained the placement of a
PICC line she was to have later that day and it ended with. “She
continues to amaze me. She will be well. She is so brave. She is my
HERO”.
Here is a bit of background. ‘Tyra’s Story’ make that ‘Our story’ is still a work in progress as I imagine is each of yours and certainly not able to be shared in its entirety . I will share
a part of the chapter that has me Remembering alongside each of you today. My daughter Tyra, lived for 16 joyfilled years with cerebral
palsy. She was in generally good health given her level of involvement
and had only a handful of unplanned hospitalizations. Over the final 6 months of her life, Tyra did struggle with feeding
intolerance, pain, and fatigue. My brave girl had her last admission in February of
2009. It was during this admission that test results revealed Tyra
to have a Metabolic disorder for which there was no cure. 2 weeks after receiving this diagnosis I held Tyra in my arms for the final
time on this side of Heaven.
The date was March the 6th 2009.
I want to take this moment to THANK our
duPont family. During Tyra’s hospitalizations we often ‘joked’ in referencing the “WHATEVER
IT TAKES” motto.
duPont’s Diva, one of Tyra’s many nicknames,
in fact received royal treatment. I fear though that
like what happens during awards ceremonies if I begin naming each department and profession I will leave someone out. What I will
say is that even with our outcome I consider this to be a place of
great healing and I Thank you all for continuing to do “WHATEVER IT
TAKES”.
Now the story of ‘US’. The stories that bring
each of us here are no doubt varied. It is the encounters and stories since the deaths
of our children that join us and that I have in fact
found comfort in the knowledge that I am not alone. I am not alone in
the frustration or astonishment at the questions and comments from
well-intentioned but “un knowing” characters. I’ll share the responses that have come to work for me. Some of these I speak
outloud, some I whisper in my heart and some I shout in messages to my
circle of Moms. My Circle of Moms – the woman who travel this journey with me /
the woman who I think of when “Why me?” runs through
my head, and “Why me” then turns to “Why them?”, “Why any of us?” / these are the women whose sorority I would have never
willingly pledged but whose ‘sisterhood’ I am so very grateful for.
“How are you?” this is such a common question so
often asked without thought. ” How are you?” took on a very
different meaning after Tyra’s death. Was I to answer with the
truth of the day? That I was heartbroken, reeling, that I was often rendered breathless and struggled to find the surface amongst the
pounding waves. Such an answer was perhaps more than the inquirer was
seeking. If I said “fine” or “okay” the customary responses. I felt
that I was somehow ‘dishonoring’ the magnitude of the reality. What
I began to say is “What are my Choices?”. For me this took care of the follow up comments too - such as “That is good to hear” or
“I don’t know how you do it”.
Really, What are our choices? I had to get out of bed. Showering for me was not an option. I should quickly
explain that I’ve made this a bit of a barometer within my circle of Moms.
If you have showered you are said to have had success
in the day. I needed to return to work. For some of you it might
have been to continue parenting your surviving children. For
me it was also to not ‘change’ Tyra’s story. Shortly after Tyra died someone
very close to me said “Tyra’s life was not a tragedy for you to
succumb to your grief would make it into one”. I will not allow
myself to make her story into a tragedy and so I get out of bed, I
shower, I work, I share “Her Story”, and when I am able I share a smile– Tyra’s
truest Legacy. This mission is best represented in the following quote
“Share a smile with someone who needs it like
you and my spirit will live on in all that you do”.
So, when I have the opportunity to play a role
in bringing a smile to the face of another or when I catch the image of
my own ‘true smile’ – the image that I feared might not ever
reappear – I am comforted to know that she lives on & that
Hers is a story without an Ending.
We also receive the “I can’t imagine”
statements. Before Tyra died I am certain to have spoken this as well. Today I’ve stopped myself from responding outloud with “you’re right, you can’t” and I kindly reply “Please don’t, I would not want you to. No one should imagine the death of their child”.
The most troubling comment I have gotten since
Tyra’s death has been “You can do whatever you want now”. My
reply “I was doing exactly what I wanted”. For those of us
whose children required extraordinary care throughout their
lives un-knowing others might
view their deaths as some type of reprieve. To this I will end with a poem I found early in this journey that holds my truth.
It is titled
I Still Would Have Chosen You
I STILL WOULD HAVE CHOSEN YOU
If before you were born I could have gone to
Heaven to see all of the beautiful souls,
I still would have chosen you.
If God had
told me that this soul would one day require extra care,
I still would have chosen you.
If He had told me that this soul would make me question the
depth of my faith,
I still would have chosen you.
If He had
told me that this soul would make tears flow from my eyes that would overflow a
river,
I still would have chosen you.
If He had
told me that our time spent together here on Earth could be short,
I still would have chosen you.
If He had
told me that all that I know to be normal would drastically change,
I still would have chosen you.
Of course, I would have chosen Tyra,
and I Thank God for
choosing me to parent her.
To parent a
soul so brave and joy-filled, what a blessing.
She continues
to be My Hero.
*This was the type written ending to my talk but I felt like something was missing and I wrote in a line to share with the audience on Sunday. I share this too with all of you who have shared in this journey.
