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.

We buried my baby this week. Lily's body now rests at Mountain View Cemetery in Mesa.

Her spirit is free.

Jacob's Words

I am so proud of Jacob. 

He was such a wonderful big brother to his little sister and she loved him so much. Any time someone mentioned to Lily what a pain brothers could be and asked if she got along with hers, she would always say yes-- and let them know her brother was different. He was nice and funny and let her hang out in his room even when his friends were over. 

It must have been hard for Jacob to have so much of our attention directed at Lily for so long, but he never complained. He was always mature and understanding and concerned about his sister. And she, in turn, looked up to him and could only think of good things to say about him. They had a strong, loving bond that will always remain. 

He surprised us all by speaking during Lily's memorial on Thursday. He was so sincere, and spoke so directly from his heart; we were all touched. He called Lily honest and powerful, funny and artistic-- and it is true, she was all of these things. But so is he! 

I've been so blessed to have children with such beautiful, wise old souls.

Here are his wonderful words of remembrance for his sister:

We miss you, Lily.

You taught us the meaning of life itself, to enjoy yourself no matter what ailments hold you down.

You showed us it was possible to be strong and happy no matter how much time you have left to feel it.

You were honest, and powerful. You will always be the one thing that holds us together.

When we were little we played together and laughed. The weather outside was always warm and inviting.

I remember when you first became sick. You only complained about minor back pain. It wasn't until the first week in the hospital you admitted it was much worse than that, only after we asked you to tell the truth a dozen times.

I remember you would always ask me to draw with you. I would always say no, and tell you that I couldn't draw as well when other people were looking. When really it was because I felt you were better at drawing than me, and I didn't want to be embarrassed.

I remember when Mergence played for you in our backyard. You and mom and dozens of others danced and laughed together. Just the thought of the joy I felt for you still makes me cry.

I remember when you were too sick to go outside. I played with you on the couch. I would voice your stuffed animals and try to be as funny as possible. You were always more comedic than I could have ever hoped to be.

I remember when you couldn't feel your legs anymore. You didn't complain or cry, not once. All you did was let us know.

I remember when mom took you away to the nursing home because taking care of you becoming too difficult. She stayed there with you. I stopped going to school just so I could visit you daily.

I remember how you were always happy, and would sit in bed painting tea cups with mom all day. Even though your hands were getting more and more numb and unusable as the days went by.

I remember hearing how you made the nurses set up a tea party, with fancy dresses and hats, British accents and make-up. I wish I was there to see it. You were almost always asleep when I came to visit you.

I remember your smile when you were awake to hear me say "I love you."

I remember when dad called me that night after I left you, to tell me that you had passed away.

I held your cold hand as mom told me your last words, enough to write a small book.

I cried, but felt happy that you were finally done suffering.

We all stayed up all night, just so we could sit beside you. But eventually, we had to leave.

The sun was coming up by the time we made it home. Your bedroom was as empty as our hearts.

I slept from morning till night that day, and mom and dad invited me to go with them and their friends to Adam's house.
 

We drove through the freeway and into the desert to meet them. The stars were bright out, away from the city. The Milky Way was visible over our heads. Everyone drank and laughed and talked. We set up a campfire among the cactus and rocks. Eventually, Adam and Brandon started playing songs on their guitars. Soon, they offered to play your favorite song, "White Bark." They played and sang, and we all listened with smiles on our faces.
 

When the song was finished, everyone was silent. There was no sound but the crackle of the fire. We all remembered you, just as you remembered us before you passed. I started to cry silently, keeping as straight of a face as I could as tears streamed from my eyes. Mom hugged me and told me she loved me. Dad soon hugged both of us. I wish you could have seen us. Maybe you did.
 

By midnight, the members of the band played one last song. We gathered around and shouted to the glowing night sky, "We love you, Lily!" Just like we did at the party when everyone was dancing months before. Everyone then said their goodbyes and we all went home. Then I wrote this.

You brought us together, and you were fearless in the face of death until the very end.

You accomplished more in thirteen years than most could have done in ninety. 

You will inspire and bring joy to us for generations to come. 

I love you, Lily. Being your older brother was the greatest thing that I could have ever asked for. 

Goodbye.

   

With Thanks and Love

Thank you to everyone for all your love and support over the past week. Lily's life celebration was so special and perfect and filled with so much love.

The gardens were simply beautiful; the sky, overcast, with the sun occasionally peeking out from behind the clouds. Pictures of Lily hung from the trees and covered the tables, along with her art work. Thank you Jane, for making it so special. Thank you also to Stonebridge Manor for allowing us to come together in such a wonderful environment.

I so appreciate friends and family collaborating to show their love for Lily and to celebrate her life. We are so blessed to be surrounded by so many wonderful, loving people!



Some of my dear soul sisters sang for Lily accompanied by Adam and Danny. The song, called "Dream" was so lovely and touching. It was so sweet of them.

Adam also sang Lily's favorite song, "White Bark" as well as his beautiful new song, "Goodbye in Harmony." One of Lily's favorite things to do was to listen to music. When she was sick, Adam would come and play for her. This made her feel so special and happy. Thank you for that.

I also appreciate those who spoke during the service and shared their memories of Lily.

Later that evening, after the celebration, it sprinkled, then poured. It was a storm worthy of Lily's appreciation. She loved the rain.

This week, we have had neighbors bringing us dinner, a house full of flowers, and hearts full of love for each other. 

A Lily Love altar filled with flowers. This is only a small portion of the flowers that fill our home.

Our hearts are full of gratitude. Thank you!!

Celebration of Life

Lily would have been 13 years old this Thursday, December 13th.

In celebration of her life, we will be holding a memorial celebration on Thursday at 1:00 pm at Stonebridge Manor in Mesa.





Love, That's What You Remember

Lily’s soul departed from her body at 12:30 am Monday December 10^th.

We had spent the week prior at Ryan House, a wonderful place where the nurses made each day special and everyone was so incredibly kind to Lily.

Our fancy tea party lunch.

We had a lovely day that Sunday. We spent time together as a family and Lily, the nurses, and I painted rocks that day.

Lily painting a rock

Lily had lost the use of her legs and had numbness in her hands. Everything she did had become difficult, but she was so tough and determined that she wanted to paint rocks regardless. She had also started to sew a little cross stitch frog that she wanted to give to one of the ladies that worked at Ryan House.

That night, after saying goodnight to Grandma and Jacob and Daddy, she fell asleep.  A little later, I noticed that her breathing had become erratic so I tried waking her. When she wouldn’t wake up, I called the nurse who then called Phillip to come back.  I talked to Lily, and even though she wouldn’t fully wake up, I could tell she could hear me. I told her again how much I loved her and reminded her that she would always be in my heart.

Shortly after Phillip arrived, she slowly began to wake up saying, “I remember… I remember.” I asked her, “What do you remember?” and suddenly, she opened her eyes wide, sat up and said loudly, “Mom! I remember!” She was awake, but it was as if she were talking from the other side. Her eyes were open, but not fixed on anything.

She said, “Who do I love? Brandon and Lacey and Jon and Jen and Grandma and Noah and Kaylee and Shae; these are the people I love. Who else do I love? Grandma Janet and Poppa, I always loved Poppa. Who else? I love so many people, and so many people love me. Mom and Dad and Jacob and the nurses. The nurses here are so nice…”

She went on listing people that she loved, then talking about everything she liked. She liked holding daddy’s hand while they watched movies; she liked it when mom read to her. She listed favorite movies, favorite books. She talked about memories she had playing with friends. She said that she liked playing in the rain and talked about playing in the rain with her friend Noah.

She talked about how she realized that having and buying things isn’t what is important.

She had us laughing when she advised Phillip to never wear socks with his Birkenstocks.

She talked for so long about so many things that she loved and then at one point, she announced that she could feel her legs again. She said, “I can walk. I can do it!” She wanted the blankets off and her bed raised so that she could sit up straighter. She was so confident and insistent that she could walk that we believed that she could too- if not in this world, then in the next.

We asked her to just relax and lay back. She did and she soon fell back to sleep. Sitting by her side, Phillip bumped the bed. She woke up again, laughing. She chuckled, “I fell asleep…” and laughed some more. Then, she peacefully closed her eyes and went back to sleep.

And just like that—with her strong, beautiful, loving, funny personality coming through to the very end--she stopped breathing and left her body.  

Phillip and I pictured her, strong again, running through the stars, the wind blowing through her hair and laughing, joyously.

We both said thank you to her for what a gift she was to us while she was here.  My heart was so full of love and Lily and a feeling of absolute wonder. I kept saying, “It’s so perfect. She’s so perfect. Everything is just—perfect.” I can’t describe the feeling that I had; strangely, only that one word—perfect—seemed right.

I think that maybe it is because all is perfect, even when life seems its worst. I realized that we can’t always know why things happen the way they do, but that Lily is looking down from the stars and that she now knows, she now has the answers, and can see the utter perfection of it all.

To know this, and to know that she is at peace and so very free makes me happy even while I miss her so much.  I had previously told her that she would always be in my heart and of course she had wisely smiled and said, “I know.”

And she is in my heart. In the last couple days, every time I think, “She’s gone.” I stop and realize that she isn’t really gone. She is still with me and I am filled with so much love.

Last night, Phillip, Jacob and I sat out in the desert around a fire with some of our friends. They played music and we stared at the stars and before we left, we shouted, “We love you, Lily!” We felt her presence so strongly.  It was beautiful.

I know that we will always remember and carry her in our hearts and I also know (because she made sure to tell us so!) that she remembers us. It’s the little things in life that matter; all those little things that add up to make a life. They are the things that we take with us. The memories of those we love and all the loving experiences that we have had together.

We love you Lily!!