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

Numbers...part two...

Today's numbers are more of a sharing moment than releasing, for they are just some of the numbers that remind me of the GOODness in THIS LIFE.

Infinite - the number of times my closest friends will listen to me
                cry, scream, and post about how I miss Tyra and the life
                we shared together.

78 - the number of miles my body allowed me to pedal on this
         beautiful day

10 - the number of days before I embark on an exciting trip to be
         filled with family, friends, and FUN

5 - the number of hours before I am at the home of my friend of 33
        years to cheer her on tomorrow morning as she competes in
        her 1st triathlon

16 - the number of years I had to bask in the JOY & LOVE of my
         sweet girl on this side of heaven

My Blessings truly are too numerous to count and for this

 I share my gratitude.

Numbers...

Numbers... they are everywhere... dates, measures, alerts...

They are in my HEAD. Some floating in and out. Some ingrained. Some illicit sadness others joy. I need to free up some space so out they come...

16 - The age I most often reference Tyra as being.

17 - The age on her death certificate. Tyra turned 17 on the PICU
         in a comatose state.

6 - The day of the month she took her last breath.

29 - The number of months since I last held her.

40 - The age I'll be turning next month. I often say "I don't know
        when this happened". I think people find this statement to be
        joking in nature, like many who question their aging. I am
        completely serious "I don't know when this happened". The
        years 22-38  *** where did they go??? I have pictures. I have
        Endless Memories as the name of this blog indicates.
        What I want...

16 to be 19 - The age Tyra would be today.

6 to be 19 - Her to be here on this calendar day, breathing.

39 - My age today, without questions on where the last 19 went.   

There are many other numbers, that I am sure to share - release, for now I must return to the number of emails and voicemails overfilling my 'boxes'.

Thank-you for the space.... 

GOODness...

"GOOD deal"            "GOOD stuff"          "It's GOOD"           "It's all GOOD"

Good is definitely one of my most used words. This is not a bad thing. I am the owner of several 'Life is Good' garments. I have only worn the ones with varied sayings in the past 29 months. Slogans such as "Hello, Sunshine", "Alternative Energy" and "Half Full" have been acceptable. I found advertising of "Life is Good" after the death of my sweet girl incompatible.

My last posting discussed my Facebook profile pics. Well, today's rainy weather has had me spending far too much time in front of the computer. In doing so I found this pic

 It is dated January 23, 2009

Tyra was still very much alive.

The description read "Life is GOOD"

My smile has been a preview to the following endorsement and today I will advertise

LIFE IS GOOD

Changes...

Some say change is good. Some have trouble with change. I just say that change IS.

It happens. We change - our bodies, our roles, our ... The people physically in our lives change - some leave, others enter.

In recent days I have been thinking of the changing of roles. My identity, the role I have placed most value and pride in is - Tyra's mom. Wasn't hard to guess that I am sure. My email address, my Face Book profile, the van I drive, all of it tied to that role - Tyra's mom.

I will always be Tyra's mom. I will always long to hear others call me that. So DON'T stop!!! Just as my parent's death made me no less than the daughter of Ralph & Sidney. Tyra's death has made me no less her mom.

With all this said. There are some changes occurring in my life. The return of joy. My smile at a whole new level. The emerging of feelings and hopes that I had not imagined possible.

Change IS.

Silly as it may seem or sound to others I have struggled with changing my profile picture on FaceBook. Since signing on close to 3 years ago this image has represented me -

I've not changed it. When others have joined in on acknowledging special days or causes through the image on their profile. This image has remained on mine. Always Tyra's mom. I had not thought I would recognize myself without her. Today I look in the mirror and am amazed and oh so grateful to see again the Joy. I am more recognizable today than perhaps at all in the 29 months since she died.

With all this said I am not ready to see a photo of myself alone (I know she is in my heart). So the following image will stand in for now.

This picture was taken at Tyra's grave site early one recent morning after a long day and night of change. I will share more on this but for today I acknowledge that, Change IS...

BLESSINGS...

A friend recently shared that she was taking her young boys to the Science Center in Baltimore. Tyra and I had some fun trips there over the years. I'll always remember Uncle Bruce laying down on 'The Bed of Nails' for her twisted pleasure. There was very little (actually I can't think of anything) Uncle Bruce wouldn't do to get a smile from our sweet girl. Aunt Randy was a good sport too and didn't cringe terribly when we repeatedly pressed buttons for body function sounds :-)

My girl and her interest in body functions. She had the best sense of humor. Everyone Poops, The Gas we Pass, and Walter the Farting Dog were frequent reads in our home. Of course there was also the strategically placed Whopee cushion or fake vomit. Our poor nurses we definitely kept them on their toes.

I've been encountering 'new' people lately. People who will never have the Blessing of physically meeting Tyra on this side of Heaven. The telling of her death is usually greeted with sad faces and expressions of sympathy. I appreciate that others are sorry to learn of my loss. Oh, but I BEG that no one feels sorry for me. I in fact think envy would be a more appropriate response. To have had and still carry a LOVE like ours and to have so many other great loves and experiences in my past and present I assure you I have been BLESSED beyond measure.

One of our favorite trips to the MD Science Center was to take in the touring Grossology exhibit. Tyra was in her glory. The picture below is of us posing in the nostrils of an interactive nose. (How fun is that?) Well, the customary response when one sneezes is to say "God Bless You"

My reply...

"Thank-you, He already has"

BOOM!!!

The explosions have woken me up early at the realization that today is...

the first 4th of July I have spent in many, many years (close to 2 decades) without either of my girls. I am the first to point out that I carry them in my heart and that Tyra is surely always with me but at this moment their absence from our home has me a bit shellshocked. Oh, how I miss our family.

"I bet Tyra is asking God how she looks in her outfit"

I know two postings in one week.Wonder is best when shared - so share I will. Today I had an amazing conversation with a friend (client). Our time together was not scheduled and in fact we ended up in each other's company due to an 'error' on the part of his driver. Well, an 'error' unless you acknowledge the role of a higher power.

On to the conversation. We were walking (he was rolling) across campus making small talk when he says "Miss Nicole I really miss Tyra". They grew up around each other. Tyra had a bit of a crush on him which he was aware of. She always had a special smile for him. I acknowledged that I too missed Tyra but that I felt she was still with me and recounted her JOY.

He went on to say "You know I never told you this before but other than my mom Tyra was the person I could always count on to make me smile." "I used to look out for her at camp, even though she didn't talk I knew what she was trying to tell the staff and I would let them know." I thanked him and shared that I always felt that he 'looked out' for her. Then he shared how "heartbroken, and stunned" he was when Tyra died.

"Miss Nicole, when I lay in bed at night I look up to heaven and I know I'll see her again one day" "That will be nice" "I bet she is asking God how she looks in her outfit." I chuckled, what an image my Diva in the mirror of God.

"Miss Nicole I know sometimes I talk in circles" Me - "No you don't you talk from your heart. I wish more people did that." "Well, Miss Nicole, I want you to know that if you ever want to talk about Tyra. You can talk to me. I'll always listen." We reached his destination and shared a wonderful hug.

These are just  few of the highlights of the conversation. I can not put into words the feelings, the energy that was present. This young man, my friend, dependent on others for some of the most basic of needs offered himself so freely and purely to me. I have been tearful (in a great way) ever since.
I pray that I can live in such a way to be worthy of the amazing gifts I continue to receive.

Coincidence???

A coincidence is said to occur when ..."something uncanny, accidental and unexpected happens under conditions named, but not under a defined relationship."

I have been inundated lately with a number of occurrences.

On June 8th, I realized that June 6th had come and gone. What did that mean? Well, on the 6th of each month, except February 2010 when there was a snow induced state of emergency, I visit Tyra's grave site. I missed it, how did that happen? Instead of becoming guilty over this I recognized that my 'shift' in the focus on Tyra's life as opposed to her death was now evident in these visits too. The 6th is a single date - Tyra's life is an ongoing legacy. I did visit her site later in the month and the following day I received an email from one of our duPont friends describing Tyra's Diva Bear that hangs at the front of the unit
 "... is never turned around the right way, and whenever she does turn around, we know that she is there. She has been turned around for the past two weeks....she is always looking over 3F. She (and most definitely you too!!!) will never be forgotten."

                        COINCIDENCE??? I don't think so.

Last week I shared the following post with a new friend

 http://luvinty.blogspot.com/2009/12/i-think-i-can-i-think-i-can.html 

This posting talks of the role our wonderful friend Hilje played in our lives. Hilje not only supported Tyra's quests to "Climb Hills"  she also assisted in Tyra's healing from orthopedic procedures and witnessed the healing of our family during some complex custody issues. Hilje was our last friend to visit with Tyra on this side of Heaven. She has moved out of state and we had not connected in many months. Two days after sharing this posting, Hilje called. We had an amazing talk and I was able to share of my own healing and the JOY that has been returning to my life.

COINCIDENCE??? I don't think so.

Today I attended a workshop on meditation and awakening. Being in the company of likeminded people is such a good feeling. Today those good feelings were multiplied. One of the exercises involved gathering in groups of 3 and sharing of a current relationship struggle. The first person in my group was a women who shared about a situation with her 20 year old physically disabled step-daughter. I was able to relate so clearly with her situation and she sought me out again later in the day. What are the chances that in a setting of over 100 people we would be sitting next to each other?

 COINCIDENCE??? I don't think so.

There was a profound listening exercise as well today in which you were to write on an index card a relationship experience that has deeply affected you. You then shared your writing with 5 people, one at a time, with the listener reflecting back to you a statement beginning "I imagine you felt..." I debated for a moment sharing of Tyra's death as I have never wanted anyone to imagine the death of a child. My heart lead me to the put the following on my index card

"My daughter, Tyra, lived joyfully for 17 years with Cerebral Palsy. Two years ago, after a brief period of illness, she died of an untreatable metabolic disorder".

More often than not the reflection noted that Tyra lived with JOY (yes, that is her message). Afterall, we are all going to die.

I pray for myself and those I love that we too can say we LIVED!

On my ride home I intended to walk the path along the Bay that Tyra and I so enjoyed together. As I crossed the bridge it appeared as though it might rain. I stopped anyway and proceeded to have a wonderful trek along our much loved path. This is what greeted me when I reached the end...

COINCIDENCE??? I don't think so.

I am so very grateful to be LIVING and LOVING this life.

I am beyond thankful for...

 eyes that can see and a heart that can hear.

Without words...

"Without words but with so much to say" this was a quote I used so often in describing Tyra. Well, tonight I am in good company.

Yesterday, during lunch with an old friend and a new one I was presented with this scrapbook. The book is filled with LOVE and the pages share the story of a fabulous adventure. The story itself extends well beyond the cover as

 "Hers is a story without a The End"

I have so much to say but am working to find the words to do it justice. Until I do, I will say that I am grateful beyond measure for the continued gifts Tyra has sent my way.

A FULL MOTHER"S DAY...

Motherhood is FILLING. I once saw the following quote on a site related to children with extra-ordinary needs.

"If you think my hands are full, you should see my heart"

Tyra continues to FILL my heart each day. She sends daily gifts and blessings my way for which I am so grateful.

On this Mother's Day I think of my own Mom, who died when I was 12. She loved being a mother. Although our time together was short, she taught me so much about the JOY of motherhood.



FULL HANDS - FULL LAPS - FULL HEARTS

I believe my mom has enjoyed holding Tyra. Thank-you Tyra for gifting my Mom with a FULL lap.

Today, I also think of Chelle, Tyra's birth mother. I imagine Tyra is filling her heart as they are catching up on missed time. In the past 26 months I've had some troubling thoughts of jealousy over their time together. Today I am assurred that Tyra has more than enough love to go around. When we all meet again I trust we will share in our JOY and the FULLness Motherhood provides. Thank you Chelle for creating such an amazing daughter.

Happy Mother's Day, Mom - Happy Mother's Day, Chelle -

Happy Mother's Day to Mother's everywhere!

Seeing, Hearing, Touching, Feeling, & Believing...

Oh, what a difference a week can make - or for that matter a day or a moment. The BEEPing has ceased and I must share that I have seen, heard, touched, and felt Tyra intimately this week. No fears I am not hallucinating :-) I have been honored to spread her JOY in some tangible ways this week and in the planning alone came so in touch with her spirit. Her kind, generous, pure nature. My little Buddha.

As I have awoken each more I greet her and the day with an audible "Good Morning". When the sun rises, a breeze blows, or a star shines I thank her. I pause to take in the beauty of each moment. I am in Love with this Life. At night there is a solar powered rock outside my patio door that has flickering butterflies above it. It shines on the handprint stone she created many years ago. As the lights begin to fade for the evening I tell her "Good Night" and I thank her again for this day. Some might find these thanks misdirected - I however am at peace with the direction and take comfort that Believing is what matters.

This morning I ended my walk with a diversion through the Zoo. The Zoo is sometimes an emotionally difficult place for me to visit. Today, I sensed how okay walking the path would be. I removed my headphones and I took in all the sights and sounds. I saw Tyra in the magnificent life - both plants & animals.

I felt her in the breeze and touched her as I rested my hands around the Sloth hanging bar that she so joyfully would cling to as we walked through together. I heard Tyra in the songs of the birds and then most profoundly in this statement...

As I stood at our favorite Otter exhibit a little boy of about 4 years old ran up. He was full of excitement and joy as he watched the Otters play. He exclaimed

"When I grow up I want to be an Odder!"

The double tt was obscured but it made the sentiment all the much sweeter. Oh, to be an Odder - to play, enjoying each moment and all the while bringing JOY to others.

A pretty awesome aspiration if you ask me.

May we all have Odder- filled days :-)

BEEEEEP....

    That sound penetrates my conscious at the most random times and it is always accompanied with the LONGING to hear the announcer proclaim "This is a test. This is only a test."

    Oh, that would mean I might divert my eyes from the screen to SEE Tyra smiling up at me (she sat in my lap when we watched TV) or perhaps I might turn down the volume and HEAR her sweet giggle.

     I excelled at tests in school. So much so that teachers would often comment at what potential I had if only I applied myself daily. I think a few were miffed at my ability to pass their course by acing exams and ignoring the daily tasks.

     Well, I'm not sure what grade I'll receive on this test but I'm fairly confident I have become a better student. It can only be through applying myself daily that I have been gifted to FEEL Tyra in all that I do. Some days this gets me through. Other days I am still left missing her beyond words longing to TOUCH her and waiting for the BEEEEEEP to stop. Today happens to be one of those days. Oh, how I miss my sweet girl.

Saying goodbye...

"I am so proud of you"
"You have always done your very best"
"It is going to be okay sweet girl"
"Mommy loves you so much"

From my arms to his -
Don't be afraid, just spread your wings and fly.

Unemployment...

In the 23 months since Tyra died I have been troubled by a particular question. The question comes in various forms and from an assortment of people. What is a spoken question really but a string of words? The words are not really the issue - it is what I had believed the meaning behind the words to be. So here is the question in one of it's forms...

 Are you going to get another child?

The get part is still a bit bothersome as I type this morning even with my new perspective on the meaning of these words. Have would be more palatable of a word but I suppose I did not in fact have Tyra so the use of get is understandable.

Anyway, on to the meaning. Up until this morning, 5:20ish to be exact, what I perceived the meaning of these words to be, was heartbreaking. The conversation went like this:

Questioner : "Are you going to get another child?"
 (insert broken heart) 

Me (often unspoken) : "Goodness are you suggesting Tyra to be replaceable?" "What do you mean get another child? She wasn't a puppy or a pair of shoes" "How could I dream of getting another child?"

This morning I thought perhaps the question is less about Tyra and more about me...

Maybe the inquiries are related to the clear happiness and joy I displayed in parenting Tyra?

I've always said being Tyra's mom was my most favorite vocation.

Perhaps people think I was good at my job?

JOB - I'd do anything to have my old job back but this is not an option. I wasn't fired. I didn't quit. It's certainly not an issue of loyalty (I'm a Company-Girl if ever there was one). The thing is my employer relocated. I have been provided with an awesome severance package; 17 years of amazing memories & adventures, incredible on the job training, and an indispensable set of skills that are certain to benefit my new boss.   

So, while the federal government discusses extending unemployment benefits I am excited about the prospect of going back to work. I must now pray for patience with the hiring process.  

Giving birth...

It is true I did not carry Tyra in my womb, she was not born of me in the traditional sense. However, during a recent visit with a new client the mom made the most poignant observation. This mother was aware from her previous case manager that I too had a child with cerebral palsy. She asked about Tyra to which I proudly brought out photos. Photos... my most prized tangible possessions.

As she was looking through the pictures I shared a bit of our story. She became aware that Tyra was in fact not my birth child. Then she came upon this picture...

This is a favorite of mine from a super fun day at the Cherry Blossom Parade in DC. People often comment on our smiles and how genuinely joyful we are. This mom said something a bit different though, she said...

"SHE HAS YOUR SMILE"

Oh, how this filled my heart then and continues to do so today. Today on the anniversary of Tyra's birth, her 19th year, I can proudly say I too played a role in giving birth...  to her SMILE

I am forever grateful to parent such an amazing spirit and I thank Tyra every day for the smiles she has brought to my life.

BIRTHDAY

On this day 19 years ago...

Make an on-line slide show at www.OneTrueMedia.com

LOVE...

“Love is the condition in which the happiness of another person is essential to your own.”

Quest for Healing...

Two years ago yesterday Tyra and I set off to AI duPont in hopes of finding some answers as to why she "just wasn't herself". I wrote about this last year  On the road...

This morning the quest for healing continues as I travel back to AI duPont to share a piece of our story with the Medical Residents during their full day conference on End of Life Care/Issues. I am honored to have this opportunity and have found duPont to be a place of healing in many ways. While the chapter to be shared today is not my favorite of Tyra's story it is powerful and worthy of retelling. It is through these experiences that her story continues.

Hers is a story without a The End...

Crooked Halo...

A friend and I exchanged thoughts this weekend about how our girls might be spending their time together in Heaven. We agreed that they often are sure to be laughing at their

"HOT MESS MOMMAS" .

Tyra was an angel here on Earth, so sweet, trusting, forgiving, generous, and joyful. She was also feisty, temperamental, and stubborn - absolutely PERFECT. Tyra was the best partner to dis somebody with. I remember her and another young Diva hanging out by the elevators during our first inpatient stay and talking about people. Well, Tyra didn't "talk" in the traditional sense but she certainly encouraged lil miss K's slurs. That was my girl. Don't get me wrong I didn't endorse bullying. The unknowing objects offenders in this case were people that truly ought to have known better, made friends with a mirror, or at least acknowledged the existence of combs, color combinations, and fit.

Back to the ^Angel^ image. I was reminded of a souvenir we got during a trip to Great Wolf Lodge in the Poconos (highly recommended). We decided to have caricature picture done together. I mentioned that Tyra was my angel and the artist went from there. Of course, Tyra was in her glory. She was a fan of her reflection, the camera, and no doubt a portrait (Misses Narcissus a nickname only I was allowed to use). The artist clearly picked up on Tyra's true spirit...

Take note of the crooked Halo and hand placement. That's no peace sign. My Angel is giving me bunny ears & LOVIN it!

I have asked Tyra not to corrupt young Mary and to stop knocking off her tiara.

( I think there is room up there for some Jr Princesses)