Amazing Grace IV: A Little Girls Wedding

Last week when I visited Grace I walked away with something on my mind that was hard to shake.  I actually delayed blogging about my visit as I was having trouble overcoming this precious little girls words.  She had made the statement that her little hand which was nestled in my adult hand, would never get any bigger.  Those words she had spoken roamed around in my mind for a few days before I could grasp what she was trying to say.

I've visited Grace four times in the past five weeks, and every visit it was like she was preparing me for the day she would pass beyond earth and enter the kingdom we all hope to be part of some day.  Each visit this tougher than a biker gang, tiny creature of God, displayed this incredible amount of courage with the battle she faces each day.  Yet, she was telling me in her actions and her words that it was important to her that I also faced this battle she is in with the same amount courage and understanding she was willing to.  It is important to Grace, that when she moves on from us, I am alright with being left behind.

Today is no different than any visit I've had with Grace prior to this one.  While I wait for her to be ready for our visit, I visited with her mother.  Her mother is tough, but I can see in her eyes, what she can see in mine.  The pain she has inside, while smiling on the outside, remaining strong with each day she has left to embrace her daughter.  The hurt in her heart that will remain behind inside her once her daughter leaves for that final journey in her little life.  The anger behind the pain and hurt that burns her soul for the day she will yearn for another hug from this beautiful little girl that will be beyond a touch in a matter of weeks.  I can only smile and offer a friendship that will outlast my friendship with her daughter.  I can only give her a tight hug that will spread the warmth of my understanding of her feelings.

Today I can hear Grace tell her nurse she is ready for her friend to come in to visit.  Her voice sounds strong, and she seems excited.  I smile, remembering from the end of our last visit, that today, I am playing barbies.  I walked into the room Grace was in, carrying a bag with me that contained a gift for Grace.  It was against the rules we set for each other from the very first time I met her.  I would not smother her with kinds words and gifts because she was sick.  I was to visit her and share her story.  Not the story of her disease, but the story of her life. I couldn't help it, I had an agenda for my little friend, and it was 'in the bag'.

When Grace saw me, I noticed she had a smirk on her face.  She was sitting up on the bed she occupied, covers pulled up close to her body, her arms under her covers.  I walked over to her, noticing she was about to burst with some sort of excitement.  She could hardly contain herself.  The closer I got, the more she squirmed.  Then she hit me with that little girl squeal as she threw up her arms, a barbie in each hand.  "Jett, I would like you to meet Linda and Jenny!"  I don't think I've ever before, at one time, wanted to both run for the door AND stay and meet my obligation to play barbies.  So barbies it was.  I honestly did not realize how much goes into girls and their fantasy barbie lives.  It was extremely exhausting.  It was probably the longest 20 minutes of life.  It was probably the funniest 20 minutes of hers. 

"What is in the pretty bag?"  she asked me.  I told her it was for a little later, but first I wanted to ask her a few questions for our interview.  "Oh, yes, the interview" she said as she rolled her eyes,  "What do you want to know today?" 

My first question had been on my mind for a couple of weeks.  "What do you miss most about your life that other kids your age have that you do not due to the amount of time you spend here, with all your medical stuff?"   She responded quickly "I miss going to school everyday and learning new things.  My Aunt Suzanne home schools me but mostly we have fun.  I think its because Aunt Suzanne and my mommy just want the time I still have left to be fun, but I miss being with my friends."

The second question was a little tougher for her to answer.  "Do you feel like you are eight Grace? Because you have more knowledge about life than most kids my age do."  She laid back in the bed and looked up at the ceiling.  She was thinking and I could almost hear the gears in her head working.  "I don't get to be here very long so I think God puts things in my brain so when I get to heaven I am not so far behind the big people there.  I do not feel like I am young. Or old.  I just feel like I do not belong here and I am excited to see if I feel like I belong with God."

"Jett?  What is in the bag?"

I handed the bag to Grace and let her pull out the little girl wedding veil I purchased for her.  She lit up like an Independence Day fire show.  Her eyes were huge and bright.  I took the veil from her tiny hands and put it on her head.  "Tell me a story Jett, that goes with my gift."   I told her a story that took her from the steps of a church, up the aisle to her waiting prince.  I told her a story about an eternal life with the boy waiting for her when she reached the alter.  I told her of a life where she would live happily ever after with people that live in heaven, and people that live on earth, that love her very much.  "It's God isn't it Jett, that is waiting for me to walk to him and live happy ever after in his life?  "Yes Grace, you are the princess and He is the prince."

Today Grace did not ask me to leave.  I had to tell her I had to go.  "I have an appointment to be at very soon Grace, but if you would like me to stay, I can make those arrangements."  She smiled, "No, you go.  We had a nice visit.  When you write my story, DO NOT leave out how we played barbies."  I told her I would try hard to fit that into my story but there was just so much to be said I wasn't sure if I could fit that in.  After all, what will my friends say about my 20 minutes of barbie play?'

I hugged my little angel, we pinky swore.  She thanked me for the veil and said she was going to wear it every day because it made her feel pretty.  One last hug and I was headed out the door.  "Jett?" she called out.  "Yes Grace?"   "Next week you can teach me how to dance, so I can dance with God."

"You bet Grace, rest up because I can dance my socks off."

"Goodbye Jett. See you next week."

"Goodbye Amazing Grace. Nice to meet you Linda and Jenny."

Amazing Grace III: Holding Hands That Will Never Get Bigger

Once I walk into the room Grace is in to receive more treatments for her terminal brain cancer, it does not take long for me to remember who is in control of these visits.  I would like to think, as an aspiring journalist, that I have the upper hand in how to play my interviews out with this amazing child of God.  I think the biggest hurdle is that these interviews feel more like a visit and less like I'm telling Grace's story.

I don't know why when I walk in and see her I hesitate to approach her and force her to invite me to move closer to her.  I'm not afraid of Grace, in fact, I feel like I have know her, her entire short life.  I guess I never want this to be my last visit and I know that as the weeks go on, her time with us here on earth gets shorter.

Her courage in her battle for life is overwhelming and makes the things I have struggled through seem so petty and I find myself wondering why I spend so much time reliving my past.  How much more would I be able to accomplish in my life if I just looked forward and never turned around to revisit what I cannot change.

Grace is more lively this week than she was last week.  Her strength seems have held up well, so I ask her about the week in between since my last visit.  She filled much of her time playing with her barbie dolls.  Linda is her barbie mom and Jenny is her barbie daughter.  She likes the name Jenny and if she hadn't been chosen by God to go home to him soon, that is what she would name the daughter her and her husband would have.  After a princess wedding of course, where she would ride to the church in a horse drawn carriage and her husband would be waiting for her in the church, and he would be 'oh so handsome and kind'.

The part of that story she told me I liked best was how for the five minutes she spent talking about the life she fantasied about, knowing she would never make it to that alter, was how much sparkle I saw in her eyes.  Looking into her shining smiling eyes, I could almost see her on her wedding day, proudly walking up that aisle to marry the man she would marry for the rest of their lives, had it not been cut short by a disease that will soon rob her of all her dreams of a future on earth.

"What about you, Jett? What will your wedding day be like?"  And just like that Grace took my interview away, and turned it back on me.  I responded that I would like to marry someday, but I have not really put a lot of thought into that due to an overload of school projects and personal goals I have set for myself.  Grace said "Well, you better hurry up before all the good girls are gone.  You are not getting any younger you know."   How do you not laugh at that?  Or at the very least smile?  The only thought that entered my mind at that moment was how it won't be long, and this good girl will be gone.  

Grace knows.  She has this insight on what is happening in other people hearts.  I suppose she obtained that quality from dealing with those of us that 'are not getting any younger' when we are faced with the thought of losing one special little girl such as herself.  She is quick to grab my hand, to comfort me, as if she knew that is what I was thinking.  Her tiny soft hand looked even smaller nestled into my adult sized palm.  "Look at this",  Grace says,  "neither one of our hands will ever grow bigger than they are now".

I asked Grace how is it that she is so strong about her illness. Was she not afraid of the unknown?  "You mean not knowing when God will let me go to him?"  Yes, that is what I mean.  "I will miss everyone I love here but I will get to see everything from Heaven.  Since this is the way God chose for me to get to Heaven, I just think about how special I am to God, and I get excited to find out what job he will give me there.  I will get to talk to your Mom, Jett, and your brother Joey who you miss so much.  I will get to tell your Mom how fun it was to have you come visit me.  I will get to meet Joey and we can sit and watch you write stories.  I can visit with my grandparents."  And those are the extend of the people little Gracie has lost in her life.  It doesn't seem right, but yet it doesn't seem wrong.

Grace talked about God and Heaven as if she understood our time on earth is temporary while God makes room for us in his Kingdom.  How do you be eight and understand the difference between fear and eternal happiness?  Most of us will leave earth and never grasp the concept of a life where everything is pure.  Grace will leave earth pure of body, mind, and soul ... as she enters God's Kingdom the same way she left us.

Our interview has taken its toll on both Grace, and myself.  She is tired, as I suddenly am too.  She pulls her tiny hand from mine and clutches it into a fist, extending her pinky finger.  I do the same.  And in as many times as I have come to visit Grace, we end with a secret "pinky pact" also know as a "pinky swear".  Her smile is as big as it can get when we repeat our secret and give each other a pinky kind of shake.  A bond neither one of us will break.  We hug and say goodbye, and as I reach the door to leave, Grace stops me.  "Jett, next time you come to visit me, we can play barbies."   Sure I told her, with a smile, thinking that when Grace GETS to go home to God, my heavenly brother Joey, will be playing barbies with this Amazing Grace.

Goodbye little Angel, I tell her.
Goodbye Jett, don't forget me, she tells me.
As if I could.

Amazing Grace II: The Love In Our Hearts

I could tell as soon as I walked into the room Grace was in she was probably not having the best moment of her life at this time.  I did get a smile from her as I walked in, which made me smile in return, in light of really just wanting to cry.  I don't know why I hesitated to go near her today.  Maybe it was because she looked less lively than the first visit I had with her.  Maybe it was because I am never sure when the last visit will be that I will have with this strong little angel.  No matter how mentally prepared I am sometimes, it is never enough, when faced with the misfortune of others.

It wasn't long before Grace spoke up and made if very clear that I should come in, move closer, sit down.  It made me laugh.  She was bossy today, something I get accused of almost on a daily basis.  What little spunk she was showing, I was beginning to feel like this visit might prove to be a little tougher than the last.  I struggle in life with time restrictions, always worried I will not be able to spend enough time with one individual before I need to move on to spend time with the next.  Something I work on, but not something I get progressively better at.

I do not visit Grace with the intent on anything more then letting this little girl tell me her story.  I cannot make her cancer take a hike.  I cannot make her short life any longer than God intends for it to be.  I cannot ease her mind about her fate.  I cannot. I cannot. I cannot.  What I can do, if only for a brief time, is to make a connection with her that not only lets her know people care, but also lets her know she is not alone.

"What do you want the world to know today my little Amazing Grace?" I ask my newest little friend.

"Today I want the world to know, it is big enough to hold all of us in it, with enough space to share all the love we should have for each other."   She responded to my question as if she had been thinking about it for the eight years she has spent on earth.  We spent a little time talking about this concept, and how when you think about how many people live on earth, do we ever really take the time to get to know each other.  Maybe we would be more accepting of others differences if we approached it through the concept of how much room we really do have not only on earth, but in our hearts, to share the best of everything in everyone.  I made the statement to Grace, with no intent of getting an answer, that when you think deep about space and how much a heart can hold, I could almost with 100% certainty, guess that no one in the world ever uses the capacity a heart is capable of holding.  Making it one of the most unused spaces in the world.  Oh I think I'm so smart, and then along comes this precious little girl who puts me in my place.  "I'm leaving my heart here when I die, so that some little person my age can have it, and continue to fill it up with all that love."  Speechless, that is what she left me at that moment, and let me tell you, that is a bit hard to accomplish with this boy.

She very quickly throws life back in my face, as if she is here for me, not me here for her.  "Tell me something about you, boy with the funny name."

I laid down next to Grace as she waited for her next round of treatment that will not cure her brain cancer, but will prolong the life they have labeled terminal, in hopes of giving science a bit longer to try to come up with something that may cure this disease that takes so many lives before their time.  I told her the story of my brother Joey, who died young, however not near as young as Grace will.

Unlike adults who would dive right into condolences, excuses, reasoning, and questions that cannot be answered, Grace just took her tiny hand and slipped it into mine, and we laid next to each other, with all the silence in the world, that was comfortable and consoling.   She gets it, I thought to myself.  She understands the confusion,  the hurt, the pain in my heart.  Sometimes nothing being said, speaks louder than anything that could possibly be said.

"You can leave now Jett.  Thank you for visiting me.  Next time you can stay longer."   She let go of my hand and shut her eyes.  I quietly left wondering if maybe I had said the wrong thing, or not the said the right thing.  Her mom assured me that she is just ready to begin her treatment and likes to have a moment to herself before they begin.  I walked out of of there, and as I left, I swear I felt a little bit of that space in my heart fill up.  I smiled, knowing she will soon leave this earth, but before she does, she was going to try to feel my heart up with more love than I think it will be able to hold.

Amazing Grace, you make me wiser.

Amazing Grace: Meeting Gracie

She was born on January 20th, 2004, a very healthy baby, weighing in at 7lb 8oz and 17” long.   On her eigth birthday she weighed 48lbs and had reached a height of 3’ 5”.  You can argue that is well with-in the range of average for an eight year old girl.  You can lay down a pretty good argument that as a second grader she is well above the average in her knowledge of what she is expected to know at this point.   You can argue the point of how at such a young age, she is one of the most fashion sensible girls among her friends.  You can make argument after argument in favor of this little girls capabilities in every day life as she excels in all aspects of it.

What you cannot argue with is her knowledge and understanding of childhood brain cancer.  She can tell you more about the disease than a child should know.  She knows how to talk in the medical terms as well as the terms an average person can understand.   She can rattle off statistics on survival rates, medical procedures in removing tumors, and the stages of cancer .

She can make you cry for her fate, and smile at her courage.  She will have you laughing about her short life one minute, and telling you in the next how she is not afraid to die.  She encourages you to ask questions to help you understand how she gets from one day to the next, one moment to another, holding her head up high and revealing her heart, big enough to embrace your sorrow along with her faith. 

When I asked her if I could interview her and perhaps share her story with others, she gladly accepted,  with the understanding that she wants to share more about what she is thankful for in her life, than what her fate in the near future is.  We not only shook on it, we pinky swore.  So for the next three hours,  I had the pleasure of  visiting with  this little angel on earth.

Words can never be written to express how I felt after walking away with a notebook full of some of life’s most precious moments as told by one of the youngest inspirations I have ever crossed paths with.   Never again will I have the pleasure of conducting such a wonderful heartfelt interview with such a delightful subject.

In a prearranged conclusion to this interview there were two final questions.  One I would ask this perfect little angel on earth, the other she would ask me.  Who will go first?  I suggested paper rock scissors, she would deny me that game for lack of knowledge of its rules and choose instead ‘bubble gum, bubble gum in the dish’ … and I would ask my final questions first.

“If you had one wish that you knew would be granted, what would you wish for?” 
With little thought her answer sent tears rolling down my face. 
“I would wish that no one else in the world would ever get cancer, and go through all the pain and fears that I have … and that I will be the last one ever, to have to die, because of cancer.”

I stood up and sat down next to my little friend, put my arm around her as she nestled her head against me.   She looked up, reached her hand to my cheek to wipe away a tear I shed for her, or maybe it was for me. 
She said “my turn” and proceeded to ask the final question for the day.  “Will you come back and see me again?”
 I stood up, put on my coat, and walked to the door.  “You bet I will,  we have a story to tell the world.”

“Goodbye boy with the funny name Jett”
“Goodbye amazing Grace”