Go back and read Ellis' history - it is heartbreaking, courageous, moving, inspirational, and a million other words. Mostly it is amazing. Ellis now watches over his mama and dada from Heaven.
This is Melissa's entry from December 10, 2006 - The words that were spoken at Ellis' memorial service:
To those of you who gathered with us these last days,thank you immeasurably.
To those of you who gathered here,thank you for knowing, loving, and remembering our son.
Thank you for breathing continued life into this space, this place, this community of Ellisville.
~Our dearest friends and family:
Look around you! These are your fellow citizens and residents of Ellisville!
Oh, how I wish we were gathered this once for a confirmation, a recital – no, a rock concert by the new band “Minimal Stimulation”.
But we are here this day, the day I feared, the day I couldn’t even bring myself to imagine, even after countless conversations with furrowed-brow doctors and teary-eyed nurses.
Our Ellis – MY Ellis, my beautiful son, my Ellis – is gone.
Of course he lives on in memories, in photos, in the incredible impact he has had on all of us. Of course.
But I cannot convince my achingly empty arms of that.
I cannot convince the oh-so-silent house of that.
I cannot even convince myself of that. Not today. Not now. Not yet.
But we are here this day –Ellisville! Gathered together in one place!
We are here because the most awful and terrifying thing has happened to our littlest hero, and yet the world did not stop. We are here because the bravest and strongest boy in the world has done the most brave and most strong thing in the world – he has let go of this life. This life that I have been so afraid of losing myself,
This life we seem to think is unending for any of us, pretending we can hold on.
This life I argued and screamed at God to continue at all costs for my dearest son.
Ellis let go.
I need to tell you about that day. I need you all to know how brave and strong our son was for us, leading us and teaching us how to let go, how to die, and how to live.
For three days before his death, Ellis struggled mightily. For three days, his body suffered tremendous injury in our attempts to save his mind, his heart, his life in some way. For three days, Ellis’s gift-heart held strong, steady, beating insistently that he was still there, he was not giving up. That day, Monday, Sam and I somehow finally knew what Ellis needed. We finally knew that he was holding on, yes, but he was holding on for us. We asked for nothing more to be done to injure his body any further. We somehow realized his body was so fragile that one more procedure, one more test, might be the tipping point and he would leave this world on a table, in an operating room, alone. We could not bear the thought.
So we asked to hold him. Yes, we discussed with the doctors and nurses what steps to take for a peaceful and pain-free end. But first, we wanted to hold him.
Sue and Cindy helped us arrange all the breathing tube, the i.v.’s, the monitor cords. Sam picked up his swollen, broken, battered body and placed him in my arms.
We sat together, the three of us, finally alone in this hospital room.
We told him how much we loved him and how proud we were of him. We told him how no matter what happened we would always be his mama and his dada. Always.
We sang, “Ellis swings on the swingset, no matter where he is…”
And his heart rate, for the first time in all his illness - with no medical changes, nothing taken away from him, nothing stopped, nothing turned down, his heart began to slow. 130, 120, 98…
We sang, “Ellis loves to hear music, especially the drums…” 85, 76, 65…
“And Mama and Dada are with him every day…” 40, 35, 20…
We looked up as the doctor came in to shut off the monitor and we realized he was slipping away at that very moment.
We wept, we wailed, we whispered goodbye to our most precious son. Our Ellis.
We spent the afternoon with him, bathing him, putting lotion on his bruised and blackened skin, taking away all the tape and bandages and tubes, covering his countless wounds with a turtle blanket.
As he laid in his hospital bed, the sunlight shone on his face through the window. He was so beautiful. He was shining. He was full of light.
And that is why we are here today, this day. This most awful - and awesome - day. Ellis brought us light in our world, no matter how dark it seemed. Ellis had SO much joy and love in his spirit that he had enough to share with each of us.
As we said to him each night before sleep,
Got your kitty cat?
Got your nana?
Got your mama?
LIFE IS GOOD!
Let us celebrate together with his favorite instruments: pipe organ, trumpet, piano, cymbals, and especially the TUBA!
Let us celebrate together the strongest and bravest boy in the world – our Ellis.
How beautiful and absolutely heartbreaking is that? How much strength and grace must Melissa and Sam have to write so eloquently in the midst of their grief?
Go to the Caringbridge site for Ellis - www.caringbridge.org/mn/ellis , and read the entire Joural History. It is touching, it shows hope, fear, hurt, sadness, joy, pure happiness and how life should be lived - the way Ellis lived it! With determination, and fight.
This is the latest journal entry from Melissa:
Six months have passed since that day -the day our world stopped.
How can our world stop and yet go on?
We recently had a brief visit with a newly-bereaved mom. The pain in her eyes and voice and her panickedly gripping hug was startling - startling because it was familiar, and startling because for us it is different now - our grief had changed and we had hardly noticed.
That horrifying newness, those sharp re-realizations, the pain that leaves you breathless - those are the descriptions of December, January, even February. Paired with a numb fog to which we retreated for work, social outings, church, errands.
I remember the day I told myself to stop. To stop with the surreality, to stop with the false hopes. I told myself not to accept this, but at least to finally grasp this - this new world, this world without Ellis. It was late February and I arrived home from work and made my way down the driveway to get the mail (like everything else, this reminds me of Ellis, as we would often get the mail together singing the song from Blue's Clues or if it was too cold I would go alone and he would watch and wave and kick with excitement from the kitchen window). As I walked to the mailbox, I had this seeming revelation that felt as real as anything I'd experienced - it had all been a mistake, a mixup! Ellis was fine! He had just been lost for a bit, and now he was waiting for us to pick him up - happy and healthy and homesick. I knew - I KNEW - there would be a letter to this effect in the mail that day. I would open the mailbox and there it would be and I would rip open the envelope and rush inside and call Sam and this whole nightmare would be over. I KNEW. But, of course, there was no letter.
The devastation, pain, great big sobbing choking wails of grief overwhelmed me again as I told myself to stop looking for him, stop hoping, just stop.
For me, this was the beginning of a very dark and angry time. Escaping with alcohol in the evenings became an admittedly too-frequent occurence. It helped me fall asleep without the flashbacks of those last days, it helped me feel separate from the grief, if only for a few hours. I will forever be ashamed of my attempts to escape anything that has to do with my son.
We retreated from friends and family, clinging to each other - seeing in each other the only other person on the face of the earth who lived each day of those hospital nightmares with Ellis, the only other person who spent countless sleepless nights in chairs near Ellis, the only other person who's eyes looking back did not judge or question or look away in fear, discomfort, pity. We are Ellis's parents. We are his Mama and Dada. Always.
Amazingly, Ellis's birthday, a day I dreaded and feared, seemed to act as a cleansing walk through his life, visiting the places he visited, seeing the people he knew. Beautiful blue skies, balloons floating up from the park, hugs at the PICU from doctors and nurses (some of whom wore their turtle scrubs for the occasion!), time with family, time remembering Ellis - this was a day that seemed to jolt me (a bit) out of my self-created pitiful pit and rejoin life. Life is good, right? Some days that saying grates a bit, I must say, but other days it gives me a glimpse (a memory) of hope. With the arrival of spring, we have moved forward with a few plans. We met with world-renowned composer Stephen Paulus so he could begin work on a piece for concert band in Ellis's honor. We placed a brick at the Angel of Hope in Maple Grove. We saw the awarding of the first Ellis Bergstrom Memorial Music Scholarship at STMA High School and will see the other two awarded this fall at Augsburg College and Anoka-Ramsey Community College. We paid back the mortgage payment that the amazing SPARE KEY FOUNDATION (www.sparekey.org) had given to us while we were in the hospital and I was on unpaid leave. We even pilgrimaged to Ellis Island for Mother's Day. After we had explored the island's museums and gardens and the ferry pulled away, I cried. I cried because Ellis isn't there, either. He isn't at home, he isn't on Ellis Island, he isn't at Grandma's house, he isn't at the hospital, he isn't sleeping in his big boy bed - he isn't with us anymore on this earth. I still fight this! I still feel like I can argue with this! As if it is open for debate and if I just come up with the right cosmic reasoning, he will come back. Swimming through surreality, grinding through anger, and just plain old holding on to each other during the dark, empty, bottomless silence. This is our world. It is not new, it is not horrifying (most days), it is familiar. Some days I have moments where I realize that I hadn't thought of him for an hour or so - maybe I was teaching or rehearsing or correcting papers - and I grieve again. For whether or not life is good, it sure has the amazing capability to keep on going, no matter if the person living it wants to or not. Sometimes I imagine that our life force comes not from ourselves, but from our family, our friends, our Ellisville community, perhaps even Ellis himself. So our lives keep on going...
Sam has made the tough decision to leave his job of 9 years at STMA highschool. (My first reaction? How will Ellis come back and play cowbell at the pepbands if Sam isn't the band director there? - Keep on swimming, I must.) Sam will begin teaching at Anoka-Ramsey Community College this fall. Yes, the same music department where I teach. It's a good thing we like each other and respect each other's work and gifts tremendously - I am very excited to know him as a colleague and I think he will be a great addition to our department. And our lives keep going...
We leave for Italy today. Yes, today. Thanks to the generous "get away from it all" gift from my Aunt Julie, Cousins Amy & Tom, Melanie & Kevin, Lori & Tom, Bruce & Tammie, Sister/Brother Sarah & Adam (and I can't forget the "priceless" contributions of MasterCard and Visa!), we will travel through Italy and Austria for the next three weeks, renewing, reorienting, remembering, and re-energizing.
For life goes on, whether you want it to or not. Change continues to occur, no matter how tightly you cling to the past. Sadness, surrealness, even sullenness all surround us, no matter what you do to try and escape. And somehow light breaks in. Sometimes light dawns at the corners of the darkness. Somewhere (WHERE? WHERE? WHERE?) Ellis is. Not was. Is. He IS. He is.
Clinging to that hope,Melissa & Sam
Go visit Melissa and Sam. Meet Ellis. Read his story. Cry for this gorgeous kid and everything he endured. Smile at the photos of Ellis and his wise, old-soul eyes. Leave a note in the guestbook.
You won't regret it :o)
Sending kisses up to Heaven for Ellis!