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18 years ago...

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Waking up...

A year ago today,  Saturday the 21st, I woke up. I woke up next to Tyra with a nurse across from us testing Tyra's blood sugar. Tyra did not flinch. I then realized - I had woken up - this meant I had slept. Slept through the night no less. Tyra too had slept through the night or so I thought. I whisperd to the nurse my surprise at this. She commented how Tyra had not stirred during the previous sugar check either. I tried to wake Tyra. Softly first - and progressively in a more panicked state. Yes, she was breathing. Yes, she was warm but she could not wake up. I say could knowing that if it had been possible she would have. Tyra always did her best. The room filled with people both from our unit and the response team from the PICU. She would need to be transferred immediately. Her color was in fact dusky, her breathing was off, and she could not wake up. So much of this day and the days to follow are a blur. What I know is that Tyra ended up intubated on a ventilator with multiple medications hung to stabilize her heart.

My sweet girl never woke up. While her date of death is March 6th, I believe that it was sometime last night a year ago that she moved on. If I had known what might I have done? I would have recorded her giggle, I would have taken our picture, I would not have fallen asleep. I am grateful that I don't have to say...

I would have been beside her - I was
I would have kissed her goodnight - I did
I would have told her "I love you" - I did and I lived this

Waking up can be so hard.
     

Already so PERFECT

I've been thinking lately of what it may be like for Tyra in heaven. Others have shared their thoughts and images with me making mention of her 'wholeness' and new found abilities. I am grateful when people think of Tyra. I find these comments sweet and hope that people continue to share them. My images of Tyra have been different though. Different, is okay. How she comes to me is a reminder of my love for her, in her already perfect form.    

Tyra has been in my dreams. Usually here, alive as part of our day to day world. Waking from these dreams is difficult as it takes me a moment to catch my breath at the realization she is gone. Twice I have seen Tyra in what I believe must be heaven. The first time was brief and I don't recall her physical surrounding or condition but she whispered the words "You promised". I knew what she meant. The second time she came to me I saw her climbing stairs. Her gait was unsteady and she was holding onto the railing but she was climbing.

I remember explaining to the doctors on the PICU last year that "Tyra was perfect, just the way she had been". It was important that they knew what my expectations for her life were, and that they understood her value to our world. Sure, I wanted more for Tyra. I longed for her to be able to communicate so that anyone she met would understand. I also wished that she could go where she wanted without depending on others. Her life was joyfilled and full of adventure. She was a teacher to those that took the time to know her. She had a huge message.

So, my images of Tyra when I daydream are of her whispering quiet simple words but LAUGHING LOUDLY as she already had mastered. I envision her taking big deliberate independent steps as she did when I supported her physically. With thanks to her little sister, Zyaire, I see their Nanny "feeding Tyra treats", no more feeding tube. I also imagine her swinging big & high, smiling all the while.  

PERFECT

ValentineS

Yes, I mean ValentineS with a capital S.

Tyra found her way into the hearts of many men.

She was Daddy's little girl.

Her Pop Pop's "Miss T"

Her Uncle Bruce's biggest fan!

         Mr. Alston's young  Queen

 Mr. Dumpson's dancing Princess

 

and of course... she was Glenn's true "lub"

NO - NO - NO & NO!

The answer to some of the questions people have asked since Tyra died is...  NO!

NO, I have not "gotten another child". A woman really asked me that today and to make it worse, she wasn't the first. Do people ask this/think this because Tyra was not of my flesh? Is it because she had special needs? Who knows why, but for the record. I can not imagine loving anyone more than I loved Tyra not even if she came from my womb, rib, or carried my genetic marker. Tyra and I were meant to be together. I fought to be her mother. She was not a child of the system. She was MY CHILD, MY PRECIOUS ANGEL, THE LOVE OF MY LIFE!

TODAY I KISSED AN ANGEL

I KNEW IT FROM THE START

THE FIRST TIME MY ANGEL SMILED AT ME

I GAVE AWAY MY HEART

TODAY I KISSED AN ANGEL

THIS ANGEL CHILD OF MINE

THOUGH NOT OF MY CREATION
MY CHILD

BY GODS DESIGN

TODAY I KISSED AN ANGEL

MY HEART IS DANCING WILD

A FAMILY BY A MIRACLE BLESSED BY

MY ANGEL CHILD

NO, I am not happy "she is in a better place". Sorry God, but things were really quite good down here. Tyra had very few bad days. Her life/our lives were filled with joy and amazing adventures.

NO, I do not have some sense of freedom as implied by those who have said "You can do whatever you want now".  I was doing exactly what I wanted, thank you very much. Life with Tyra was easy, never a chore, certainly never a burden. It is without her that I am bogged down, at a loss, with little direction. Just the other day while I walked precariously on the snow I recounted how surefooted I was in the same situation while carrying Tyra on my hip. We climbed flights of stairs together that might now render me short of breath. I wanted nothing more than to parent her forever. 

& NO, I'm not "over it". Thankfully, no one has asked me this. I sometimes worry that people think it, that people are waiting for me to feel better. I don't know that this gets better. I do believe that it will get different.    

I found the following poem some time ago on another site and boy does it ring true 

PLEASE - don't ask me if I'm over it yet. I'll never be "over it."

PLEASE - don't tell me she's in a better place. She isn't here.

PLEASE - don't tell me to get on with my life. I'm still here, you'll notice.

PLEASE - don't ask me if I feel better. Bereavement isn't a condition that "clears up."

PLEASE - don't tell me that "God never makes a mistake" or it was "God's will."

You mean he did this on purpose?

PLEASE - don't tell me "at least you had her for _17_yrs."

What year would you choose for your child to die?

PLEASE - Just say you are sorry.

PLEASE - Just say you remember her, if you do.

PLEASE - Just let me talk if I want to.

PLEASE - Just let me say her name without turning away or changing the subject.

PLEASE - Just let me cry when I must.

THANK - YOU

Covered...

This weekend's snow had us covered here. I wasn't able to go to Tyra's site on the 6th, a first. Each month I have gone out on this day, tended to her site, and sent her a balloon with a kiss. This Saturday our roads were covered and I knew that she too was covered. I got her balloon on Friday fearing that the party store would be closed. I also had a new mylar butterfly filled for home. Since Tyra died I have kept a butterfly inflated in our living room. Tyra enjoyed balloons. Holidays were always accompanied by helium filled symbols - bunnies, shamrocks, hearts, pumpkins, and the frequent butterfly. Well the first balloon, pink & purple swirled latex, hit a tree and popped. My heart sunk. Not only did I not get out to her site, she didn't get her special delivery either. When I walked back in I saw the Butterfly - smiled - and said "Oh, you wanted this one" - so, the butterfly flew off into the sky.  

This was not our first snow but this time the idea, the image, of my sweet girl covered was so troubling. I tried to reason with myself, reminding myself that this is not where she really is, thinking I would go out on Valentines Day and send her a heart, perhaps the covers would be lifted by then. I couldn't do it, I needed to do something for her, I couldn't wait. So, Tuesday afternoon I ventured out to the cemetary and cleared off my precious girls marker. Thank goodness for her flag as her site would have been otherwise hidden. It wasn't until I got back into the van that I realized how disturbing the image of me plodding across the deep snow of the cemetary with a shovel in hand must have been. I then thought that Tyra, with her very twisted sense of humor, was surely smiling at the image of her mother resembing a grave robber. Oh, if someone had called the police she would have certainly laughed hysterically. Tyra has always provided the bright spot in my day.

.

A little snow doesn't change that.

On the road...

Nope, not today. The blizzard has kept me off the roads both by choice and by the declared 'State of Emergency'. Last year however, Tyra and I were on the road. After spending February 9th emailing the very attentive Dr.R. back & forth it was decided that Tyra needed to be re-admitted the following day. We set off to duPont that Tuesday morning in hopes of finding some answers - some relief...

Never could I have imagined that I would be returning home without her. I still can't believe it.

Record HIGHS

February 8th 2009 the thermometer hit 69 degress here, a record high. Tyra and I took advantage of the warm day and headed out to the Zoo.

These pictures obviously are not from that visit. Tyra just wasn't herself on February 8th. She was exhausted and I didn't even get a giggle when we ran down the ramp from the Bison exhibit. She always laughed at this. We had been working with her doctors to keep her home following a six week stay at the Hotel duPont in Oct/Nov. Tyra was still not tolerating her g-tube feedings and depended on the TPN through her PICC line for nutrition. We had however gotten into a groove with the PICC, ever adapting. Tyra was such a trooper but on this day it became so clear that my baby wasn't OKAY.

This trip to the Zoo was our last. So many good memories were had there. We visited daily when the weather permitted. Sometimes on our tandem bike. Yes, they let us ride through - always special treatment for the DIVA. We also 'test drove' lots of new equipment on those walkways amongst our friends the flamingos & the otters. I am working on a project to make a memorial contribution toward some accessibilty features and a much needed family bathroom. While I wouldn't want a bathroom to bear my girls name, I would love to have a bench installed in her memory.     

  

The Butterfly... so lucky we were to have seen it (her)

FIRSTS & LASTS...

Many FIRSTS have come and gone. The 1st day of Spring, Easter, Mothers Day, my first solo bike ride, Back to school (boy was that one tough), of course there was Thanksgiving, Christmas, and entering the New Year - 2010 a year that only her memory will be a part of.

Today marks 11 months since I last held Tyra, since she took her last breath. So many LASTS are approaching and my heart is aching for what was. The moments of saying "this time last year" are getting shorter and the memories of  "this time last year" are more difficult to remember. Tyra put up a good fight. She always always did her best at everything and I could not have asked for anything more of her.

I started this Blog to document Tyra's 'LIMITLESS JOY & BOUNDLESS LOVE'. Unfortunately some of the ENDLESS MEMORIES are painful, many do not know of her final chapter and I hope that putting it here will free some space in my head and allow my heart to be filled with the JOY again. So, in the coming month many posts will speak of  "this time last year".

Oh, how I miss "This time last year" - We were home...TOGETHER