OPEN EYES & SO MUCH LOVE...

My good friend shared this earlier. It has been on my mind and in my heart ever since. I am so very grateful for Eyes that are Open, a Heart able to be Filled, the true Smile, and so much Love...

“You can shed tears that she is gone,
 or you can smile because she has lived.
You can close your eyes and pray that she'll come back,
or you can open your eyes and see all she's left.
... Your heart can be empty because you can't see her,
or you can be full of the love you shared.
You can turn your back on tomorrow and live yesterday,
or you can be happy for tomorrow because of yesterday.
You can remember her only that she is gone,
or you can cherish her memory and let it live on.
You can cry and close your mind,
be empty and turn your back.
Or you can do what she'd want:
smile, open your eyes, love and go on.” 

  -- David Harkins

Stories...

I've had parts of this post in my head since Sunday but I had a story or two to embrace first. Make that many stories. Let me introduce the main characters; Jake, Christina, Amor, Joshua, Sanaa, Joshua, Jeremy, Abigail, Aiden, Colton, Kylee, George, Irlanda, Leo, Lucas, Brianna, Michal, Kevin, Rina, Cody, E'Niyah, Shania, Dorian, Lexy, Timmy, India, Mervin, Evan, Gabriel, Lilly, Gavin, Noxah, Brionna, Elizabeth, Hannah, Thomas, Makayla, Haidin, Jomari, Erin, Mark, Celia, Ethan, Jeremy, Elana, Tristin, and Emily.

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 6^th 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.

  

CONFESSION...

I have a confession of sorts to make  and  "No" I have not converted to Catholicism. I've got nothing against the religion, in fact some of by best friends are Catholic. Back to the confession - oops - one more disclaimer; while I've never sought out to present as righteous, if you have enjoyed this type of belief about me you may not want to proceed with this post.

Okay enough of the suspense - I'm not a felon but I did get THIS in the mail today

I know it is a rhetorical question but the answer is "No". I was expecting this as I have written some pretty hefty checks to the DMV over the past couple of months. I drive like I cycle MASHING the PEDAL, and guess what? They do give points for consistency.  

I had gotten a bit uneasy with my last violation and pulled my driving record. Well, it showed a clear record for quite a long period up until just over 2 years ago. My driving habits hadn't changed. So what was it? I'd been stopped before (many times if we're confessing completely) but rarely did I get a formal citation. So what changed? Had I lost my charm? Then it hit me...

My 'Charm' had been in the back seat and I had lost her.  

This realization did stop me in my tracks initially.

 Tyra was the best traveling partner.

We sang. We laughed. We drove fast. Sometimes we  she

           SLEPT

and... We got pulled over. Tyra would wake up for traffic stops and once the officers noticed her in the back seat we'd exchanged nicety's but no written citations. Here is where the REAL confession is. As the officer of the day would approach my open window I often turned to Tyra in the backseat and said something like "It's okay pumpkin. Mommy's not gonna get in trouble. We'll be fine." This would definitely draw the officers attention to my CHARMER and that million dollar, citation forgiving grin of hers. If the Officer looked too intense I'd pull out the big guns and start fiddling with Tyra's feeding pump. A little lecture on "pulling over to take care of her needs - since I clearly had my hands full" would be given but again no formal penalty.

Once my window was up with the officer returning to his patrol car I'd let out a sigh with a "that was close" and Tyra would laugh with delight. She knew just what had happened. My CHARMER. As we'd pull off I'd sometimes ask her rhetorically "You don't think Mommy's going to Hell for that, do you?" This prompted even louder LAUGHTER.

Now I've confessed. I don't think I'm going to Hell but I may well be going to Driver Improvement Class (a close 2nd).

  

Her page...

Her page...

It is that time of year again, and again I am honored to have Tyra remembered with the many other much loved & missed children who were cared for at the AI duPont Hospital for Children. Again, I also struggle to 'capture' her story on an 81/2 x 11 page. Again, I am saddened that my favorite picture to be used in the slideshow remains the same. No new photos of my sweet girl.

This year though too I am grateful. Grateful, to have the opportunity to share The Parent Thoughts during the service. Grateful, in the healing recognition that Tyra LIVED! It is because of this that I did not include dates on this years page. What are dates anyway but numbers? It is the LIVING that matters most.

LIVING with GRATITUDE this Life!!!

TOUGH & DURABLE...

I recently opened a book of poems that has been on my office desk for many years. The collection, "Hope through Heartsongs". The author, Mattie Stepanek, a boy with Muscular Dystrophy who passed away in June of 2004 at the age of 13. I was struck by one poem in particular this past week, rewrote it, and posted it next to my computer screen. It reads...

BOTH SIDES  

Every privilege comes with a responsibility.

Sounds Tough.

Every responsibility comes with a privilege.

Sounds Durable.

Responsibility & Privilege, both have me working into the night 'catching up'. Both had me take a break from the work for which I receive a paycheck to work on the talk I am to share at next months Remembrance Service at the Children's Hospital where Tyra spent her final days and where I continue to find great healing. 

TOUGH & DURABLE

(that about sums it up)

to LIVE...

Wow, I'm unclear as to where this post will lead but have so much to share, to acknowledge, to ...

Yesterday, I attended a funeral. Yesterday, I was introduced to an amazing 31 year old woman with a short but very FULL story. Sound familiar? The service was for the sister of my dear friend and fellow traveler on this journey of the bereaved mother. Of course there was sadness as is the case when anyone who is loved leaves our physical world. Oh, but more importantly, there was laughter. Hers was a story to be shared. Hers was a service filled with people who shared pieces of that story. People who will certainly carry on her story. Sound familiar? I was reminded of Tyra's service in so many ways. I was reminded in the comments from our dearest and closest friends on how very FULL Tyra's life was. On how others who had not met her (many of my highschool friends) left Tyra's service feeling as though they had. How could this be possible? Because she HAS an amazing full story. A story of LIVING.

I find myself saying often "We are all going to die". This is sometimes received with a somber face. I don't say this to be depressing, maudlin if you will. It is a fact. We are all going to die - 7 month old little girls die, 17 year old teenage daughters die, 31 year old young women die, 49 year old mother's of four die. It's not a matter of if but when. The true question in my mind is can we say that we LIVED? I mean really lived. I can say that while I certainly would love to be experiencing new adventures with Tyra our life together was one lived without regret. Were there future plans? Sure. I was going to take her to Vegas for her 21 birthday. Well, she had not turned 21 yet. So, it did not happen. Otherwise we LIVED. We wrote an amazing story.

I can think of no unfulfilled wishes. I wish we had...  better yet I can think of no I wish I hadn'ts... you know like - I wish I hadn't spent so much time at work. I wish I hadn't used my earnings to pay mortgage on a home that she wouldn't have LIVED long in anyway. Tyra and I LIVED. No regrets. If we had an inkling, a desire we made it happen. We had fabulous JOYfilled adventures. We had an amazing full story. Tyra's story did not end with her death, neither did mine (well, neither WILL mine)

My most recent adventure was a trip to WA state. I've wanted to go visit with my dear Uncle who lives there. I've wanted to attend a concert of one of my favorite artists. I've wanted to visit the islands that were so special to my Aunt. So... I did. Vacations have never been about relaxing to me or getting away for that matter. Vacations are a time to LIVE. To experience new adventures. The sign in my mind of a great vacation is not to come home rested but to some home exhausted having taken advantage of every moment. This is how I LIVED my life with Tyra and this is how I intend to continue LIVING. It all felt so good, so right. My mouth hurt from smiling (having gotten sunburned lips after falling asleep on the grass during the music festival - a contributor). If the only compliment I ever receive on my physical appearance is that I have a great smile that will be quite alright. I heard that often during my weeks adventure.

I had real encounters with people. I put away the filters. In my life I have befriended the most amazing population of people, those with developmental disabilities. I have been surrounded by my filterless friends since my early teens and have learned so much from them. Just say IT, for goodness sake. Just do IT. Just LIVE! If you ask me they get it. Got a question?? ask it. Have an inkling?? do it. Filters, can keep out impurities. They can keep us from getting 'burnt' but they also keep the sun out. Had I not gotten burnt I might not have truly felt the smile.

I have so much more to share on this adventure. I will do so soon and with picture for sure. Tyra made profound appearances. Today, I am off to LIVE some more. The sun is about to rise here and my bike is calling my name. Lovin & LIVING this life!!!

Back to School...

Hey Kiddo,
I know, a letter on a non-holiday. Well, I figured with all the commotion (earthquake, hurricane, tornadoes) you deserved a personal acknowledgement. Actually Ty, Mommy just really really wants to talk to you. I want to hold you. I want to hear your laugh, gosh I'd even be okay hearing that impatient shout of yours. School starts today.You wouldn't be starting until tomorrow with the upperclassman. Your Senior year... wow. We would have been shopping already. Shopping not just for your incredibly fashionable gear but shopping for; Mr. Dumpson's - Black Forest Gummy Bears, Mrs. Davis' - Peanut M&Ms, Miss Sherry's - soft peppermints, Mr. Harrel's - Twizzlers, of course we'd send Miss Bonner (Mrs. Grunden) some Nerds ;-) The list goes on. You loved to give. We loved to see that everyone had their favorite. There have been so many wonderful people that have come into your (our) life - Mr. Alston & his Snickers mustn't be forgotten either. I miss them. I miss meeting your new teachers. I miss figuring out the best way to include you in the class discussion. I just... well... I just miss being your mom HERE on this side of heaven.

Mommy is preparing for an adventure. I have been excited but as the days approach I am saddened still that my favorite traveling companion will not be physically joining me. We were quite the pair, huh kiddo? Seamless, in sync, it was all so GOOD. It is crazy how the days and weeks go on, how I can encounter situations that would surely send me reeling and then something as seemingly mundane as changing to a new wallet sends me spinning.

Here it is kiddo, your student ID. Your Freshman year... so many changes that year. You had your hair relaxed - mommy was getting pretty skilled with the flat iron. You started getting your eyebrows waxed - remember the older women in Miss Toni's salon saying "Your not going to wax the 'baby's' eyebrows are you?" and you would laugh. They quickly learned how TUF you were. You didn't have to wear your AFOs as often which meant your UGG collection expanded. Oh Kiddo, and of course this was the year you struggled with illness and moved on. Mommy must admit that I said a few not so nice words when I came upon the picture. I am so very grateful for our fabulous journey, for the many lessons you taught and continue to teach me, for the wonderful people you brought into my world. But truth be told... Mommy is angry that I am not preparing you to go to school tomorrow, angry that I am packing for one, just... angry & missing you.

I left many of your cards behind in the old wallet but kiddo this one is staying with me for a while. It is positioned again near my own. This is where I am most comfortable finding 'you'. So when I board the plane on my adventure and pull out my licence there you'll be... that signature smile of yours to greet me and while I know you are with me always it's kinda nice have my traveling companion a bit closer.

I love you sweet girl!

                                                                                                 Always & Forever,
                                                                                                               Mommy