Sunday, March 6, 2011

2011-4-6 Are You In The Stars?

March 6, 2011

Dear Gagie,

This weekend Dad and I went to a pretty Bed and Breakfast in McMinnville, OR.  It was beautiful and the perfect birthday gift for me from your Dad.  The house was high up on this hill with a really long driveway.  We were given a special room with a balcony and it looked out over the valley.  I loved having all the views and space around us ... I felt like I could breath.  I also felt like we were up in the clouds like you in heaven.  It was so quiet except for the “peeper frogs” in a small pond on the property.  The beauty of nature always makes my  heart feel good.  Since you made your journey to heaven, my heart felt sad.  But, just like your smile ... it made me feel good.  At night the stars were beautiful and bright.  It was cold so we couldn’t stay outside too long, but I looked up and wondered if you were up in the stars.

What is space?  Have figured that out?  Are black holes really a way for spirits to travel to heaven?  Is your spirit a supernova or does it have as much energy as a supernova?  I wouldn’t be surprised it it was.  I bet you just shot out of your body when you realized you were free!

I find myself saying or thinking “Gage would really like that” or “Gage would order that calamari from this menu”.  I think you would have liked the food from the tapas menu at the restaurant we went to on Sat. night.

Barbara and Scott put together a wonderful slide show for your service.  It actually made me smile and not cry.  Why is that? Maybe because it is the celebration of you life with lots of pictures of your smiles ... and you know how much I love your smile.

I sleep with your Hobbs and your blankie.  Your blankie is starting to lose your smell but it still gives me something to hold when I can’t hold your hand or to cuddle with Hobbs when I can’t cuddle with you.

Come to my dreams buddy.  I so wish to see you running, laughing and playing.


Good night sweet boy. I miss you so much!  I love you, Mommy

Saturday, March 5, 2011

2011-4-5 Grief Will Not Be Denied

March 5, 2011

They say “grief will not be denied”.   You have to face grief or it will come back 10 fold.  I see that this morning.  Yesterday was my birthday.  It has been almost three weeks since Gage’s passing.  My first birthday without  a hug, “Happy Birthday Mommy”, a big smile, a hand made card and a gift he and Trux picked out together.  Not exactly a day I want to recognize or celebrate, but Trux and friends wanted to make sure I had a good day because Gage would have wanted it that way.

Trux treated me to a nice breakfast in bed.  The girls (Barbara, Jane and Jan) treated me to lunch and a pedicure.  This also involved wine at 1pm in the afternoon.  The buzz numbed me to the sorrow for the rest of the day.  After a brief meeting with the pastor, Kea and James Davis came by with chocolate covered strawberries and bananas ... yum with wine.  The smiles and laughter came easily and we spoke of Gage with joy.  Next Frank picked us up for a nice dinner with more wine.  It turned into a nice day.

Then at 1am the buzz was wearing off and the hangover came on and the loss of Gage hit me in the gut.  I know I can’t wish for him back or to wish to redo his life with us.  Make a deal with God to give Gage a life without cancer, but was it his destiny to have a short life and to pass at 9?  God could “rewind” but have him pass in a different way?  By suffering or having this disease enabled him to touch so many lives and accomplish the most beautiful and amazing miracle .... LOVE.  Changing lives for the better.  Changing people’s paths in a way they never considered?  It has done that to us.  We have more of a focus on making a difference in this world and the world of childhood cancer.  Because of this six year journey we have experienced the places where there is a need for support.  There are so many it will be interesting to see what we do first.  For now we are trying to get funds to Liddy Shriver Sarcoma Initiative.  As things grow we will add more.  Gage’s art is providing these funds.  He never wanted to share his art, but it just touches people ... just like his spirit.

Gage’s spirit:  Wow ... it was ... IS ... magical.  People were drawn to him in a way I could never understand.  What was it that was so magical about him?  Beautiful brown eyes, dimpled smile, handsome/angelic face, excitement about life, wise, so so smart.  It was as if his essence was angelic ... holy.  Could people see the power of God shining from him?

Whatever the full “plan” of Gage’s journey is ... I already see the miracle working.  I also understand how this miracle would not be possible without Cancer.  This journey took us to different hospitals where Gage drew more and more people into his circle.  Those people followed his fight with Caringbridge.  An instant death would not have reached the number of people as he touched.  Gage had a following and still has a following.  The people he touched are now watching Trux and I and how we mange this grief.  For those Gage touched who live far away from us ... is it presumptuous to say ... pay attention.  As  ... was  God trying o reach you and touch you.

As I write this ... could I even say or equate Gage and any suffering child to Jesus?  Jesus brought people to God ... it seems these amazing children are a gift to us and a sign of God’s Love.


So, no, I would not wish away our journey with Gage.  I could not imagine the miracle happening any other way.  My friend Genai sent me a memorial gift card.  It mentions missing a loved one’s light.  That is the word I was trying to find.  The “light” of these children emit is magical and draws us in.  the words in this book also say the following:  “imagine if a unborn baby could think about birth, he or she would likely be afraid because to leave the only world the tiny baby has known would seem like a kind of death.  Yet, on the other side of birth most babies find themselves in caring and gentle arms as they are introduced to their new homes and families.  Thus, the trauma of the birth struggle is left behind for a new, greater world with those who will offer steadfast love and affection”.

Friday, February 25, 2011

2011-2-25 Eulogy Thoughts

February 25, 2011

Dad has returned to the Eastcoast and I await Becca’s arrival.  Trux is busy with work and I am puttering with laundry and ideas to honor Gage.

Monday and Tuesday we went to the beach with Dad.  It was nice to get away but re-entry to our empty home was hard.  Thank goodness for Stripe and Bender who welcome us back enthusiastically.

Today Pastor Bob comes to discuss the service further.  Trux did not think we should do a Eulogy but I want to talk and celebrate Gage’s life.  Some thoughts:

signs - thunder, solar flare
I Hope You Dance

Day of Passing

Sunday, February 20, 2011

2011-2-20 Brave Little Soul

Sunday, February 20, 2011

Tomorrow will be a week since Gage passed and the world continues to go on.  Today, last week Gage was alive.  I sit on the right side of our bed where Gage was.  He slept next to me and I could always reach over and hold his warm soft hand.  I knew we were going to lose him, but for that moment he was with me.

People keep saying I should make sure to journal this time.  Frank would say I “should” not feel like I don’t have to do anything.

Gage’s “signs” have helped to warm my heart and put a stop to the moments of deep despair.  I feel numb most of the day.  When I wake I think I am one day older and one day closer to seeing Gage again and holding him in my arms.  One day closer to no longer living this nightmare.

Gage’s purpose in this world will continue to reveal itself.  One miracle is my half sister and niece are talking.  Before they were growing apart.

When we named Gage we later found that the name “Gage” means “pledge, oath” and “Alexander” means “man’s defender, warrior”.

At the time when we discovered the meaning Gage had not yet been diagnosed.  Gage was already enchanting people at a very young age, so we thought with pride, maybe our little boy is meant for great things.

Gage has done great things and we are so proud of him. But, we wish that did not involve a short life.

The meaning of Gage's name,  “man’s defender”, “warrior”, clarifies or confirms how he touched so many lives.  It reminds me of the poem of the brave little soul.  The little soul who chose to live a life of suffering so he could create the miracle of Love.  Gage never knew the meaning of his name, or at least I don’t recall talking to him about it  His art though was always images of warriors and battles.  The correlation is so amazing.  Was this suffering his choice?  Gage’s day of passing, Valentine’s Day is the day we celebrate Love.  It all fits together.

Someone once asked me if I knew Gage’s destiny would I still chose to be his mother?  Absolutely ... I am so honored to be the one and only person he called Mom.

I miss him with all my heart ... but he still reaches out to me.  Today I was walking Bender again in Tryon Park and I heard the hoot of the owl again as I tearfully told the park ranger Gage’s story.  It also makes sense that Gage would contact me through a Grey Horned Owl.


Friday, February 18, 2011

2011-2-18 Day of Passing - Valentines Day (2)

February 18, 2011

After Gage passed I held him and savored the feel of his body against mine. I held him without worry of hurting him or making it hard to breathe. I held him and cried. I cried so hard.

It is all so foggy. Trux and I had some time alone with Gage. At some point the CNA nurse (Norma) and I bathed him and put him in his favorite clothes. It was his camo pants, Avatar shirt and camo sweatshirt. We also put socks on him. It was comforting to tend to his body. Norma and I talked about Gage. She told me a story of a 4 year old boy who died and came back. He said all children got to sit on God’s lap. That there were angels with swords and bow and arrows ... a lot like the angels Gage drew. I wonder how much of the images Gage drew were memories of what he knew of Heaven and not just his imagination?

When we were done we let our friends know of Gage’s passing. They came to say good-bye and Gage’s friends, Ally and John, came to see Gage one last time. We had visitors until 9pm. After everyone left, Trux carried Gage out to me in the car. Our last drive together like so many trips to the hospital. Because Gage’s back hurt, he would lie in the back with me with his head on my lap. On this trip, we wrapped him in his Spiderman blanket with his pillow. We brought his stuffed snake, his dino bionicle, some Yu-Gi_Oh cards and a pocket knife. I could not let his blankie or stuffed tiger “Hobbs” go. I am so grateful to have them to hold, smell, kiss and cry with. Gage looked like he was asleep on my lap.

When we arrived at the funeral home, Mark (the Social Worker) was there to greet us. He helped Trux carry Gage into the chapel where they had a table ready to place Gage on. I sobbed, hugged and touched my little boy for the last time. It was so hard to leave him. This body that we have tried to care for all these years. Just leaving him with strangers in a strange place. I knew his body was only a shell, but he still looked so beautiful and angelic. He was cold, very cold by now ... the confirmation that he was gone. He had wonderful long eyelashes soft skin ... my boy ... my beautiful boy ... it was so hard to leave you. At home I had struggled with keeping him with us overnight and taking him to the funeral home the next day. Deva said there was a good chance he would change and final images are very strong. I feared for this final image. The image I have now is of a sleeping little boy. My last sight of him was at the door of the chapel. He lay alone in this big room on the far right side in the corner. So small, so still. So hard to leave.

Frank drove us home and Trux and I sat in the back. Quiet and numb. The thought of cremating his little body also heavy on our hearts. Frank helped us with this. He believes that the cremation allowed an instant release of all the powerful energy and essense of the body. Gage’s body so broken ... I liked the thought of all that strength he had exploding into the universe. I was numb and the ride was a visual fog. It was a cold rainy day and night. We returned home to Sis and Moby. I recall sitting in the livingroom with Trux with the animals in our laps. I don’t remember what we talked about, but we had a drink and cried together. When we crawled into our bed that we shared with Gage for so many months, we slept an exhausted sleep.

The next day I woke and my whole body felt like rubber. It was a day of feeling numb, so much sobbing, so much sadness. Pastor Bob came by in the morning to go over the service. I could not contain my crying so we covered date options and other details I don’t remember. Three PM was the time scheduled for the cremation. I spent some time talking to Deva on whether to be there for the cremation or not. Deva and Mark were our proxys and were our eyes for the process. Trux and I had the strong need to know everything happening with our boy ... but we knew we could not watch with our own eyes. Deva discouraged me from one last viewing of Gage. She said these last images are very strong and I was afraid of Gage changing a lot from the day before. She suggested Trux and I go for a walk together to connect with Gage and be with him spiritually. Trux suggested Tryon Park where we took Gage frequently.

Deva and Mark stopped by the house first on the way down to the funeral home. Someone had given us Valentine’s Day cookies with Mom, Dad and Gage. We never gave Gage a Valentine so I wanted these to go with him. I asked Deva to give him one last kiss for me. So she told me to kiss her forehead and she will pass it on.

At the time of the cremation we were visiting Gage’s favorite spots on in the park. We explained to him what the cremation was and it was complete release from his body. We told him how much we loved and missed him but were happy he was free from his broken body. Even if he had managed to fight off this disease, his life would have been filled with so much more pain and suffering. We knew Gage’s attitude was he didn’t care and just wanted to live.  God loved him too much and knew he did not need to suffer any longer. Instead, freedom from pain and suffering was possible in Heaven.

Trux and I talked about Gage’s last hours when he was in some distress. This is a hard and torturous memory and we cried over this. Then at the time of the cremation there was a loud rumble of thunder over our heads. We like to believe that Gage and God are saying he is okay. Thunder in February in Oregon is rare. 

(In retrospect, as I retype these notes, maybe the thunder was as Frank had mentioned. That the thunder was the sound of the instant release of all the powerful energy and essence of Gage’s body)

When Deva and Mark came back to our house, they brought Gage’s ashes. We had a fire going and we cried and laughed together over wine. One of the things Deva mentioned was the number that was for Gage’s ID. It was 579579 and the funeral director said it was an unusual number and asked if it had any significance to our family. I could not think of anything. We talked until late and then Deva touched her forehead with mine and said that is the return kiss from my boy.

Whenever Gage had a question we could not answer, we would “google it”. The next day I “googled” 579579. The first few pages were MLS numbers for real estate. Nothing specific. I was wondering if Gage was telling us where to live next.  When I got to the third page (3 seeming an important number in relation to Gage), there at the top of the search results was “I Love You”. It caught my breath. When I opened the link, it brought me to a discussion page about saying “I Love You” in French.  What caught my eye next is that the first journal entry of this discussion was dated July 13 2007! July 13 is Gage’s birthday. A possible significance of 2007 is 2+7=9, Gage’s age. Is that my sweet boy saying “I Love You”?

I think Gagie also communicated with me yesterday as well. It was a hard day for me. When I woke everyone was in “business mode”. Trux had written the obituary and was talking about going to the movies. paster Bob was scheduled to come by and Moby wanted to go over the artbook he created of sampling of Gage’s art. I was feeling overwhelmed. They also wanted to discuss the service details.  I was feeling anxious about the art book because I know how private Gage was about his art.  Would he be okay with this?  I knew if I was there during the service discussion I would just cry the whole time.  I went to my room and cried and thought I needed to escape to Jane’s.  Luckily she texted me and was on her way home.

We had tea and talked and she helped me work through my thoughts.  We went for a walk with Gage in Tryon Park.   I was swimming in green ... the ferns and moss.  The sun was in and out and it was beautiful!  At one point there was a nice sunny spot and Jane and I lifted our faces to feel the warmth.  We each said a prayer out loud.  Mostly asking that Gage is safe, free, running and playing.  After our prayers there was a brief silence and then the sound of an owl hooting in the distance.  Jane and I were shocked ... an owl in the middle of the day?  It made us smile thinking it might be Gage.


Later that day I was talking to my doctor.  She was knowledgeable about Native American faith.  I asked if there was any significance associated with an owl.  She said that the owl represents wisdom and an old soul.  Wow ... that is our Gagie, so wise beyond his years.  Later she called back and said she had a friend who had knowledge on the Northwest Native faith.  They believe that the owl is a newly released soul!   More evidence our Gagie is hearing us.

Wednesday, February 16, 2011

2011-2-16 Day of Passing - Valentine's Day

Going back to these memories I knew was going to be difficult thus delaying this blog.  I also strongly believe that going back is significant to see from where I have come compared to where I am today.  My purpose for letting others into this experience is to give other grieving parents hope and the strength to live.  

I was recently inspired by a mother, Scarlett Lewis, who lost her son in the Sandy Hook Elementary shooting.  Jesse was six years old and a hero because he ran in front of the bullets to save the lives of his classmates.  Jesse also left his mother evidence that his spiritual self knew he was going to die.  He had written the words "Nurturing, Healing, Love" on a chalk board in their home.  This was not a regular thing for Jesse to do.  It was too painful to return home immediately after the shooting, but when Scarlett did return, she found those three words, written phonetically as a six year old would write. When Jesse's box of school items arrived, there was a drawing of an angel standing in front of a black, dark evil being.  

Scarlett's words were validating to me because I feel I have had many experiences that tell me Gage is safe, healed, alive and with me.  Scarlett also described an "experience" she had where she had died and Jesse was alive.  During this experience she wanted desperately for Jesse to find happiness again.  Many efforts at comfort from others have included that Gage would want me to live, but I could not absorb these words. They would just flowed over my numb body and off of me.  For some reason Scarlett's experience reached me and went right to my heart.  It would tear me apart to watch Gage suffer through grief if I was the one who died.  Maybe this explains why I have the strongest and most immediate coincidences when I cry.  In life, Gage never liked it when I cried and I have gotten the strong message he feels the same way in the After Life.

My journey is about my search for the answer to why Gage had cancer, why he had to suffer and why he had to die.  Additionally, this journey includes many experiences that encourage and sustain me to believe that Gage is guiding me and keeping me on task.

The section in green is what I have retyped from my journal entries.  I have tried not to change anything and keep it as it had been written, in the "free write" format and unedited.


February 16, 2011

Has it really only been 2 days? My sweet, beautiful, loving, strong little boy has made his journey to Heaven. The day of passing was February 14, 2011, 3pm - Valentines Day. The day of Love. Gage and Frank (Gage’s art instructor and friend)had been planning Valentines Gifts to me, Trux (my husband) and Sis and Moby (Gage's grandparents). Gage had woken at 6am. We were blessed with a full night’s sleep, which is amazing since the night before he was up most of the night. He was wheezing and struggling to breathe.

The other day Frank said that now is the time to write about this ... but it is so hard to relive because with it comes sadness and regrets. As I try to fight the thoughts of regret, I struggle with so many emotions that are brought back to the surface from those last moments. 

Those memories that torture me and make my guts twist ... I have to remember are past and once we were able to get Gage comfortable ... he had forgotten those difficult moments and was just grateful not to be scared anymore. The medicine can be like amnesia medicine ... like when we were at the hospital. Those medicines erased any memory of fear or pain.

I have to believe that once we were giving him the right medicine ... he was comfortable and peaceful in the moment ... just like he lived his life. Also, once he passed ... the fear of dying was gone and he was free.

I am writing in green because this is the color Gage used to draw. He was a wonderful and amazing artist and has left us with so much to admire.

When Gage woke at 6am and he asked what time it was. I told him it was 6am. His mouth was dry and he wanted to sip on the flat Dr. Pepper (his favorite drinks were Dr. Pepper, Root Beer and Birch Beer). It is amazing on how foggy this is all now ...

I think we gave hime more morphine and “relax medicine” (Adavan) and this helped him to rest more. Trux stayed with him while I had coffee and showered. When I went back to the room, Gage was struggling to tell Trux something. 

When Trux stayed or slept with him he held his hand. Gage always was comforted by have his hand held. It was always comforting to me because it was so warm and soft, it warmed my heart.

When I had given him the “relax medicine” he wanted to make sure it would not knock him out. He said he didn’t want to be a “Moby Junior”. Moby (Trux’s step father) is infamous for his “monumental naps” and sleeping a long time. This made Trux and me laugh. We made a comment on how he can make us laugh even now. Gage’s come back was something like “the only thing that would make me laugh is me in a tutu”. I was shocked to hear that because we have a picture when he was 2 or 3, at Ally’s house, in a tutu. He was always very embarrassed about that. 

After we gave him the “relax medicine” Trux and I switched places and Trux went for a run. Gage had been declining but we did not know this was the day he would die.  I settled next to Gage and put the pillows by his feet so I could lean on them and face Gage and he could see me. I held his sweet little warm hand and read to him from Narnia: Voyage of the Dawn Treader. Gage rested a bit but then would awake in a panic and couldn’t breathe. I gave him more morphine and “relax medicine” and had Sis try and reach Trux. I felt he needed more medicine but wanted Trux to be there to be on board with the decision. We were trying to honor Gage’s wish not to give him much “relax medicine” but he was in distress. I called Hospice and told them the situation was urgent and we needed a nurse. The anxiety of the moment was so intense. They put me on hold while they tried to find the closest available nurse. Deva (the Hospice nurse) was on her way ... a half hour out! That was the longest half hour. 

Trux returned and we were trying to get Gage comfortable. Gage was trying to tell us something and it was so hard to understand. I think and pray we guessed right and that he was scared and needed help. I think I told him we needed to give more medicine and he would sleep and probably wake in Heaven. Deva arrived and was helping us administer the meds to get him out of distress. She said she heard him say “I am scared, I don’t want to die”. We tried the best we could to provide comforting words. In the past, Gage expressed worry about needing more oxygen eventually. I had promised that Hospice had medicine to help him with breathing. When Gage was in distress ... which is what I promised would not happen and with tears I told this to Deva. Once we increased the “relax medicine” he was peaceful and comfortable. Gage could not be comfortable and awake at the same time. So Gage slept and we all sat around him and talked and read to him. I called Frank and he brought to us the Valentines gifts Gage requested. Shortly after opening our gifts our brave little soul passed at 3pm.

Trux is reminding me of more that was said when I was telling Gage about more medicine and waking in Heaven. Trux says that I said it is okay and that I had once heard the saying “dying sucks but death is beautiful”. 

(I had been thinking how death sucks and this saying popped into my and I regretted allowing them to escape my lips. These were adult words, not something to say to a dying child. I wish I could rewind and talk to him about the cartoon characters he loved, Pokemon and how they evolve into stronger beings. On the show when the Pokemon evolved it looked like an uncomfortable process but after they were more powerful than ever.)

Gage was very upset with this and said “don’t say that word”. He roused from his groggy sleep trying to say these words. Trux finally understood because of a recent talk he had with Gage about death, anger and the cancer. Trux told him he could use bad words like “sucks” between the two of them but not around me and his grandmother, Zeze (Sis). When I said this bad word, Sis was standing behind me.