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Miranda Rae's Page 
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Miranda Rae Shively
Born: May 4th, 2000
Started raiding God’s hall closet: June 5th, 2004
(No… It’s just not in me to type, ‘pasted’ or ‘D…’)
Miranda was diagnosis with ALL, Acute Lymphoblastic Leukemia, on Jan. 7th, 2001 at 6:45pm, in Dr Linderman’s office. She also received a BMT, Bone Marrow Transplant, at Duke University Hospital on June 21st, 2001. It commenced at 9:46am. Nine and a half months later like a bad joke she relapsed on April 1st, 2002. To write out all of her victories and her setbacks, to list all her procedures, to chronologically spell out what this child of ours had to endure… it would take pages. Isn’t it interesting though… the dates and the places you remember?
Miranda came to us as a miracle, amazed us on a daily basis and left us in awe of her spirit to live. How some one can come into your life, wrap your heart around their finger, throw you into total turmoil and then leave? Only a child could do that; so easily… so completely.
I have amazed myself with what I have shared with you all. From the anger, frustration and just the heart break of it. I’m not sorry one bit. A look at Miranda through our eyes and my words, can only give you a mere glimpse of what our lives are now without her. To be so young… who would have thought that she would have been a big bottle of Elmer’s Glue from her craft drawer- that held us all together. After she went to play with God – ransacking his hall closet I’m sure- we all have fallen apart. Mere glue, Super Glue, Liquid Nails or even Gorilla Glue won’t be able to put us back together like we once were.
(PERSONAL NOTE: I’m not crazy about the metaphors with the glue either… sorry)
The song I “wrote” for her is below and revised. It will remain as-is until a well know singer wants it to produce. Then they can take artist license with it. I modified pieces here and there with keeping that touch of irreverence. Where I have been advised to talk to God, I find our conversations one sided. When I stand before him it will be again, note- I’ll be the one listening! You worry over your own souls’ and I’ll worry about mine. Just don’t doubt, because I’m at odds, because I do believe.
I have given both Dylan and Miranda nicknames, what parent doesn’t, right? Dylan will be forever Squirt and she will always be my Shorty. And as parents will do, I screwed-up their names; I was calling her and ,’Squirt ‘ came out. She blinked, got a serious look on her face and said,’ Iz not Swqaurt…Iz Shorety’. That will only help explain apart of the song I changed.
Hey Shorty
1.) Do you ever look down and laugh at us
Or cry over the day he took you from us
There is no more pain – only for us
You’re in heaven; we’re in a hell
Down here on earth.
The Bastard has won yet another battle
But to God’s glory He won your war
Pictures they may fade
Our memories will forever stay
What is it you say,’ I do it, I DO IT MYSELF!’
Hey, hey Shorty take my hand
Lead me through heaven
Show me what’s so damn grand
How can it be all that great?
We cry all the time
And I am filled with such hate
Your Mother, brothers
The rest of us too
We’re all down here in our hell
Missin’ you
~~~ And don’t ya know ~~~
Lil’ Ms. Emily still comes in…
Lookin’ for you
2.) Won’t you come to me if only in a dream
And show me what you now do
Can you show me what I need to be
So I can be there with you on my knee
Is your Nanna there – your Pappa too?
Are they the ones who care for you?
If in this dream it’s him I should meet
I’d fall to my knees- begging please
Forgiveness, understanding is all that I’d ask
Dear lord living has become such a task
Pictures they may fade
Our memories will forever stay
What is it you say?
‘I’z not sqwaurt – I’z Shorety!’
Hey, hey Shorty take my hand
Lead me through heaven
Show me what’s so damn grand
How can it be all that great
We cry all the time
And I am filled with such hate
Your Mother, brothers
The rest of us too
We’re all down here in our hell
Missin’ you
~~~ And don’t ya know ~~~
Lil’ Ms. Emily still comes in…
Lookin’ for you
3.) We wipe our tears and try to move on
For tomorrow I know more will come along
I know you’re better off- sad to say
Better off then with us – anyway
I want to hold you and kiss you too
Give you a big ole belly fart
Aah to hear your laughter
all too hard when apart
Eric had it right for I won’t be able to stay
Here in heaven with you it’s just a dream
I just wouldn’t belong
Pictures they may fade
Our memories will forever stay
What is it you say,’Iz shore, really! Iz shore!’
Hey, hey Shorty take my hand
Lead me through heaven
Show me what’s so damn grand
How can it be all that great?
We cry all the time
And I am filled with such hate
Your Mother, brothers
The rest of us too
We’re all down here in our hell
Missin’ you
~~~ And don’t ya know ~~~
Lil’ Ms. Emily still comes in…
Lookin’ for you
Journal
Sunday, June 3, 2007 2:04 PM CDT I have thought about what I could say, or should say, with it coming up on three years on Tuesday.
One, I thought to apologize for not journaling more often. I would like to strive for once a month. But as you can see that doesn’t really mean anything any more. To promise to do so would mean I promise to lie to you. Not knowing how many still comes or how many have written our site off… I tend to do this for you, but mainly for myself in my feeble little way to keep my daughters memory alive out in the great global community of cyber-space.
Second, I write these all with an underlying current of confusion and my sanity slightly left of normal. I am going to attach at the end of this journal, one of my past journals. My sanity… or lack of it… is well represented in this entry. For those of you who have read it, welcome back; for those who have not… welcome to my hell.
Sanity… what a concept. Please, someone define sanity. If we were all insane… wouldn’t that mean we were all normal? Thus make all the sane ones the really insane ones? So I guess the better question to ask is what’s normal? This insane world of ours affects all of us in different ways with different impacting results. Some of us continue to wear our straight jackets in the back of our minds with little whispers filtering though to keep us on the edge. Others just have to wear them like they wear their hearts, out on their sleeves. Unfortunately their sleeves are tied in the back; and, if they are lucky… no muzzle. Yes, my sanity is in check, but there again it is all relative. We as a family have been able to move forward whether or not we have wanted to. But too, never does a day go by were we do not think of Miranda.
Miranda would be seven. More than likely she would be ending first grade and racing to second. Envisioning how she would be, how she would act, how she would be doing is never hard for my overly enhanced imagination. I can see her running in with homework and artwork to show her crafts-buddy she calls Momma. I can see Gail being extremely paranoid for all the coughs, sneezes and colds she would come home with. I can see her looking at me as the other kids have as I try again to explain pie charts and fractions. OK maybe not in first grade… but I can still see it. That particular glazed over look of I’m here but not listening. I can see Dylan and her discussing a particular teacher she has / he had. I can see them just as much as ever, arch rivals, nemesis and partners in crime. Through aging they would come to terms with old arguments and put aside them for new ones.
Can religion really help?
Here again I suppose it is relative. I am not going off the deep end on you, basically, because I don’t know enough to do so. I can’t, and even if I could, or won’t start spooling verses from the Bible. Just the same, through his grace and his own sacrifice do we inherit the kingdom of heaven. How does this reflect in me and in my family’s life? It assures me that we all will see Miranda again… just not in the same fashion. This again opens up a whole new cornucopia questions to ponder. If you can only imagines the questions we have asked. Take those you have come up with and multiply them by a few million and you would have ours. I have settled myself with the ever burning questions that continually plague my mind and that they won’t be answered here on earth. It is really hard pill to swallow. I want, not only my daughter… but I want answers… NOW !!!! Having gone to church as a family for the past year has help in my searching for answers. Well, answers I can get here on earth any way. I’m not ready to shave my head, grab a sheet off the bed, grab a tambourine and make a mad dash to the airports for my salvation (Please note if this is YOUR personal way of praising the Lord, I commend you and look forward to spending eternity avoiding you in heaven).
I leave now for another month or so still pondering my words and maybe our sanity level out here in North Carolina. I hope you take a few moments and reread my old journal. Much of what was written about two and a half years ago… still, sadly, applies today. Time here seems to be loop. For it still revolves around Miranda and how much we miss her. More profoundly, we think in more terms of how things apply through what we have gone through with Miranda.
Thank you again for coming,
Martin
Sunday, February 13, 2005 10:39 AM CST
Is this one of my worst? It can’t be my best… that one includes a eulogy… you decide.
I have taken a turn.
Maybe for the worse… this is yet to be seen.
For all of my other ‘taken from, The Book of Sorrow and Pain’, this week any way, has taken a twist. For this week…
Torn from the Annuals of “The Tortured Bastard” series.
Dedicated to all us tortured parents who have lost our children to … fill in with your own disease. Who looks at the world differently now and the embankment to an overpass and ask God,” Please don’t let this hurt too much”. To those of us who can’t quit make the car go that way. Some of us still realize there is a far bigger picture still yet to paint. Other lives here on earth are still dependent on us… and our sanity on them. We just have to bear the pain and not let it show too often.
Was it not The Shadow that asks,’ What Evil lives in the heart of man?’ Try being a cancer parent and you’ll have a whole new meaning for the phrase. For some of us its darkness instead of evil, darkness is vague- too encompassing. Then again, it is also broad enough to allow you to imagine things in our terms. Darkness… it can comfort. Run to it to hide. Dwell in it too smolder your hatred. Darkness is what you’re left with when your light has been snuffed out. Just because I’m a cancer parent don’t for a minute think we have exclusive rights. There are far too many different types of bastards out there other than just mine.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
It starts with the color purple. Why is it so predominant? I go to the cupboard for a glass. Any more I reach for one of the .39 cent 16 oz cheap plastic purple cups. Ah! Miranda strikes again. Her favorite color… Purple.
This answers the question too why the jacket I wear is purple. The buckles are a bright polished brass. They accentuate the ensemble...don’t you think? The straps are of the finest Corinthian leather… dyed to a purple to blend with the rest. It is supple enough to give if I need to shift- stout enough to yet hold me. Aaaaah this is my jacket. It may only live in my head (for now) and recess into the shadows in public… but it is still there… always … … always waiting.
And this is where I find myself, in my head. With my, “Jacket” squarely on and tightly fastened… do I dare say, it is also… “Straight”?
So leave now. Find a happier place. Find a happier site… they do exist, I think. At least I’ve been told. Please, if you stay, tighten your heart and keep your words to yourself… I have enough voices to listen to in here.
And it begins… again.
I fall to my knees quietly sobbing to myself, ”Noooooo… I don’t want to be here.” I look up and I am faced with a dark corridor. Not just any corridor. It is the 5200 corridor at Duke University Hospital. This is the corridor where the Bone Marrow Transplants (BMT) takes place. This is where the dying, for me… … …started.
REMEMBER WHEN YOU WENT AWAY
AND I BEGGED YOU NOT TO LEAVE
BECAUSE I WOULD GO BERSERK, WELL!!
YOU LEFT ME ANYHOW
AND THE DAYS GOT WORSE AND WORSE
AND NOW YOU SEE I’VE GONE COMPLETELY
OUT OF MY MIND…AND!!
THEY’RE COMING TO TAKE ME AWAY HA HA
THEY’RE COMING TO TAKE ME AWAY HO HO HE HE HA HA
TO THE FUNNY FARM WHERE LIFE IS BEAUTIFUL ALL THE TIME
AND I’LL BE HAPPY TO SEE THOSE NICE YOUNG MEN
IN THEIR CLEAN WHITE COATS
THEY’RE COMING TO TAKE ME AWAY… HA…A…a…a
I struggle to my feet and spin around to get away only to be met by a creature. It is a cross between the Grim Reaper and the Third Spirit of Christmas. But its’ bulk fills the robe- it fills the corridor. There is nothing small or dainty about it. Though the corridor is dark and the shadow beneath its’ cowl is darker I can still see, sense, it smile. What kind of creature is it that would derive pleasure from this kind of torture? The Reaper? A Spirit? A Creature? No, I think none of those. Who else could derive pleasure from the pain of little children? Lingering here, in my head, to feed off of what is left of my br/pain.
I stand in front of the bastard himself.
I study the corridor for some thing to use against him. OK, I know with a straight jacket on I’m even more defenseless then usual. I could at least kick something into him… I find a plastic toy-riding car. We stare at each other- measuring each other. I try to figure out his weaknesses. He sizes me up on how long it will take me to die of his disease. I have to face him or the corridor… the straps are secure… after a couple more minutes of struggling I need no more convincing. How I want to bury my hands in his throat. I might be able to… here in my head, but not without my hands. This leaves me just as defenseless as when I am among the living.
I have no choice, really. Even in my own darkness I know I can’t face him like Miranda did. With the bastard, home field (home mind?) is not an advantage.
I face the corridor.
This is where the screams begin. Dear God, make the screaming go away!!!
Is it any wonder… the sticks, spinal taps, the procedures, achy joints, fevers…but please remember- not all screams come from the kids.
(The sound of a lone church bell rings, lonely, forebodingly, painfully. A single ring and yet it’s hallow echo reverberates … lingers.)
I rush to the first room and press my head to the window. Damn it! I missed CC … again. I always do. I only met her mother. And now she is gone. A tear rolls down my cheek as easily as it does her mother’s. How can she smile through the tears? How can she be OK with this?
I lift off the window and turn towards the other end of the hall. Out of the darkness comes little Roberto happy and content in the little toy-riding car. I could never talk to them, language beerier and all. All the Spanish I know would either get me slapped or knifed. But we did communicate. A thumb’s-up here or there or a pair of hands poised to pray was enough to understand. He’s happy. He’s laughing. HEY! He’s not in PICU.
(Again, the bell rings. And as it lingers Roberto dissolves into a black corridor again)
Dear Lord… treat him better then this world did… then again, it won’t take much.
And will you do some thing about all the crying!!!
I smile as I see Emily. Dave and Judy are with her and they are having one of those good moments. They are actually laughing together. I feel terrible for watching…
(The bell sounds again and Emily too fades away. Now the laughter turns to tears and crying. Now I feel guilty. Not only for intruding on a private moment, but also for not being able to get to either and hold them… OK, maybe just rub up against them in this jacket- it IS quality leather after all.)
Again with the screams…. Dear God please let it stop.
My head whips around. This is new. Laughter? Laughter!!! Laughter any parents would know in a heart beat as their own child’s.
Miranda??? MIRANDA!!!!
YOU THOUGHT IT WAS A JOKE AND SO YOU LAUGHED, YOU LAUGHED!
WHEN I SAID LOOSING YOU WOULD MAKE ME FLIP MY LID
YOU LAUGHED…RIGHT?!?!
YOU KNOW YOU LAUGHED I HEARD YOU LAUGH
FROM THE HEAVENS YOU LAUGHED
AND LAUGHED AND THEN YOU LEFT
BUT NOW YOU KNOW I AM UTTERLY MAD… … AND!!
THEY’RE COMING TO TAKE ME AWAY HA HA
THEY COMING TO TAKE ME WAY HO HO HEE HEE HA… A …A…a
TO THE HAPPY HOME WITH TREES AND FLOWERS AND CHIRPING BIRDS
AND BASKET WEAVERS THAT TWIDDLE THEIR THUMBS AND TOES AND
THEY’RE COMING TO TAKE ME AWAY… HA… A…. A…a
I run… as hard as I can- never gracefully, especially with a jacket such as mine on.
Is it surprising to hear echoes of her laughter and not to see her? Not in my mind it is not.
I still run though the darkness of the corridor still trying, still failing and finally tripping over something.
I land hard and my world swirls. Things have shifted too.
I’m still in a corridor and it’s still dark. Ah… yes. Now we’re in the 7900 corridor of Carolina’s Medical Center. Yes… this aught to be… fun? For now the dying will really take off… welcome to my hell- for the screaming here is clearer, sharper and will pierce your very soul.
Dear God… make it stop… MAKE IT STOP!!!
Here on the seventh floor, even if only in my mind, all the doors and windows are in the shape of fish bowls. You either have a window to the outside to look out or the door into the corridor. Leaving the door open to the hall, one and all that pass by will undoubtedly sneak a peek in as they pass. This leaves you with the feeling of being on display. HMmmmm… Shut in or on display??? No… not much of a choice.
I see her room. I know what is coming; I know where I am going. With legs of rubber I start my walk down the hall.
(The bell rings for Jake… Jacob Courtney. He’s the one, when he past, we had to explain to Miranda that he was all better. And NO! She couldn’t go to his house to play. He is the closet thing she had to a friend her age outside the family. They played together in this very same hall. Tears… how can there be so many tears???)
Now I run, for I don’t want to relive every death we have had to endure on this floor.
(The bell rings as if for a Sunday morning church service)
Running has amplified not only the ringing but the misery too. The crying, the anguish, the shear terror, it continues to ring in your ears long after it has actually stopped.
I lean my head against the wall outside her room to steady myself- to let the ringing subside.
Once the ringing has in fact subsided the cries and screams return… did they ever leave?
DEAR GOD I BEG… MAKE IT GO AWAY!!! MAKE IT STOP!!!
Hands gently pull me from the wall and hold me.” Do you want the screaming to stop”?
The only thing to come from my lips is a meek,”… …yes… …”. It is a nurse that holds me. Which one? We, Miranda, had soooooooooo many. “Miranda waits for you… and as soon as you shut your mouth… … the screaming will stop”.
MOMMA COOKED YOUR FOOD
I TOTED YOUR STUFF
AND THIS IS HOW YOU PAY US BACK
FOR ALL OUR KIND AND UNSELFISH LOVING DEEDS? HA!
WELL YOU JUST WAIT
WE WILL FIND YOU YET AND WHEN WE DO
WE WILL WRAP YOU IN OUR A*R*M*S*
YOU SWEET ANGLE GIRL!! AND!!
THEY’RE COMING TO TAKE ME AWAY HA HA
THEY’RE COMING TO TAKE ME AWAY HO HO HE HE HA HA
TO THE FUNNY FARM WHERE LIFE IS BEAUTIFUL ALL THE TIME
AND I’LL BE HAPPY TO SEE THOSE NICE YOUNG MEN
IN THEIR CLEAN WHITE COATS
THEY’RE COMING TO TAKE ME AWAY… HA…A…a…a
So I do in fact shut my mouth and amazingly enough … the screaming stops too.
So I’ll leave you here right outside Miranda’s room. I get to go relive her last week of her life. I get to relive every single breath she took from now till her last. I get to relive, funeral arrangements, giving her eulogy…
And the great thing is…
I get to do the same damn thing tomorrow and the next day, and the….
THEY’RE COMING TO TAKE ME AWAY HA HA
THEY’RE COMING TO TAKE ME AWAY HO HO HE HE HA HA
TO THE FUNNY FARM WHERE LIFE IS BEAUTIFUL ALL THE TIME
AND I’LL BE HAPPY TO SEE THOSE NICE YOUNG MEN
IN THEIR CLEAN WHITE COATS
THEY’RE COMING TO TAKE ME AWAY… HA…A…a…a
THEY’RE COMING TO TAKE ME AWAY HA HA
THEY COMING TO TAKE ME WAY HO HO HEE HEE HA… A …A…a
TO THE HAPPY HOME WITH TREES AND FLOWERS AND CHIRPING BIRDS
AND BASKET WEAVERS THAT TWIDDLE THEIR THUMBS AND TOES AND
THEY’RE COMING TO TAKE ME AWAY… HA… A…. A…a
Read Journal History
Hospital Information: Between God's hall closet and the Crafts Room
Heaven
777.777.7777
Links: http://www.smilequilt.com/miranda.html Miranda's Quilt - this should take you straight to her pg.
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