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On January 5th, 2011, Lily was admitted to the Phoenix Children's Hospital because she was experiencing pain in her legs and back. A week later and after what felt like a million tests, scans and biopsies, we had a diagnosis: she has a soft tissue tumor called Alveolar Rhabdomyosarcoma. A PET scan revealed a small tumor in her foot that was not apparent from the outside; it was not until the cancer had already spread to her bone marrow that she experienced any symptoms. This came as a total shock to everyone as Lily has always been healthy, active and full of energy. We love our darling girl and her sweet, happy, loving spirit. This website is for friends and family to stay connected during this difficult time.

Monday, December 24, 2012

No matter how imperfect— All is perfect

Anyone who knows me well knows how very sensitive I am. I’ve always felt everything so strongly- which means that growing up was difficult, especially in our society that doesn’t necessarily value introverted, sensitive souls.  I always felt like I needed to be tougher somehow.  Strong is not a word I ever used to describe myself; I’d be much more likely to call myself weak, wimpy, and a downright big-ole-baby.  Yes! I was hard on myself but I figured I needed to toughen myself up rather than realizing the simple fact that I wasn’t weak, just sensitive, and that I only reacted differently to situations because I felt everything so much more than many of those around me.
This sensitivity certainly extends to the situations that I have found myself in dealing with Lily’s illness over the past two years. I have such a strong bond with my girl—so strong that it seemed like every ache, every pain she experienced was echoed in my own body. More agonizing still was the mental pain as I worried and sympathized day and night for sweet Lily.  The first time she got an IV, I literally had to lie down on the hospital floor or I would have fallen down. And that was only the beginning, and obviously a simple procedure in comparison to others she had to go through later.
You can imagine, then, how strange it is for me to hear others say how strong they think I am.  It’s made me realize that I am able to be strong because I’ve been sensitive my whole life. I’ve already learned how to be courageous in the face of fear. I’ve also already learned how I deal best with strong emotions-- by being alone and giving myself the time to reflect on and process the situation. I meditate, I write, I read and I run. I embrace my solitude.  I give my soul room to breathe.
What I have always considered my greatest weakness truly is my greatest strength. It is what makes me who I am.
I wonder too, when others tell me that I’m so strong, if they are taking into account the fact that we have already been up and down the grieving process what feels like a million times over the past two years. It has been a rollercoaster of emotions that we have lived every day.
 Losing someone slowly isn’t easy, but it certainly gives you time to learn acceptance and to find peace while they are still living. And I’m glad that I was able to be strong for Lily. That I could sit by her bed and feel my heart overflowing with nothing but love, that I could smile at her instead of cry, and that I could assure her that no matter what- everything would be okay- and mean it with every ounce of my soul.
And she was so brave and so accepting. She taught me the true meaning of letting go.
I had to see Lily lose so much, so slowly. I watched her lose her hair, her healthy vitality, and her rosy cheeks. I watched her lose her ability to run and dance, to hike mountains with me.  I had to watch her lose the use of her legs, her bowels, and slowly, her lungs. I helplessly saw her become exhausted to even breathe, something each one of us takes for granted every day.

I watched her bravely let go of these physical things as well as ideas, hopes, and dreams that she had for her life on this planet.
I’ve grieved for the wonderful mother she could have been. For all the babies she will never hold. I’ve grieved for the dazzling artist in her and all the marvels she could have created.
I’ve grieved for the idealist in her that looked to create a better world than the one she was born into.
But none of these what- ifs and could- have- beens were ever really real to begin with. 
And the wonder is, that as each of these things were lost or let go of, the more Lily’s true being became visible to me.  As her physical body broke down, the brightness of her spirit shone through. 
I knew she was brave, but I never knew until she was sick the level of courage her soul possessed.
I knew she was smart (even when the school system told me she had learning disabilities), but I didn’t know how truly wise she could be.
I knew she was humble, but I didn’t know it was possible for anyone to live in such a state of grace, of positive acceptance.
It’s almost as though at some level, this wise, old, courageous soul knew and had long ago accepted her destiny.
Could she have chosen this life with its physical suffering to purposefully inspire and enlighten each of us?
I believe it is possible.
It comforts me to know that all of life is imbued with meaning, even when the bigger picture isn’t readily apparent.
I don’t claim to have any answers; I simply trust in the beauty of a perfectly ordered Universe.
It’s all love.
And when, in spite of everything, we hold love in our hearts and let go of all that other stuff that doesn’t even matter—we allow our light to shine and our true being comes through—and that is what I saw in Lily over the last few weeks that we had together.
And at the end, as I held her hand, I could sense that she was at peace, she was free, happy, laughing, able to run again.
She was full of love.


What is the purpose of one life?
Countless have lived and died never knowing the answer.
I do not know the answer.

I do know this:
We are all connected in infinite, intricate ways.
Some obvious, others we cannot even begin to understand.
Every action of one affects the whole.
A life (however short) filled with love, beauty and acceptance is never in vain.
There is anger, violence and fear in this world,
but every life filled with light diminishes the darkness.

This I do know:
I have experienced the light of a radiant soul.
And I am thankful.
I am humbled.
No matter how imperfect—
All is perfect.

5 comments:

Megan said...

what you are, is beautiful my dear.

Unknown said...

My First Christmas in Heaven

I see the countless Christmas trees around the world below. With tiny lights, like heaven's stars, reflecting on the snow. The sight is so spectacular! Please wipe away that tear. For I am spending Christmas with Jesus Christ this year.
I hear many Christmas songs that hold so dear. The sounds of music can't compare with the Christmas choir up here. I have no words to tell you, the joy their voices bring. For it is beyond description to hear the angels sing.
I know how much you miss me. I see the pain inside your heart. But I am not so far away. We really aren't apart. So be happy for me dear ones. You know I hold you dear. And be glad I'm spending Christmas with Jesus Christ this year. I send you each a special gift from my heavenly home above. I send you each a memory of my undying love. After all, "LOVE" is the gift, more precious than pure gold. It was always most important in the stories Jesus told.
Please love and keep each other, as my Father said to do, For I can't count the blessings or love He has for you. So, have a Joyous Christmas and wipe away that tear. Remember, I'm spending Christmas with Jesus Christ this year!

Love,
Lilly

(I hope your family enjoys this poem, it was given to me when my grandmother died a week before Christmas....my thoughts and prayers are with you and your family. Autumn Litz (AZVA CT)

kimberly said...

thank you for sharing this....you ARE beautiful....and so was every word! xoxo

Anonymous said...

To you,

Thank you for writing these words.

This life's realities will bring out the most amazing colors in people. Your light radiates so brightly Alicia. Strength as a silent warrior for goodness is a great thing to be in this lifetime & future lifetimes. Lily was & is one....you are another.

Much and ALL LOVE,
Stacey

alicia said...

Thank you, each of you, for your wonderful comments! Much and all love indeed!!