I have had a post prepared for days but then, things changed. Evan is doing so much better this month and therefore I have had some time to pick up the million pieces of my heart that shatter each time his spirits sink doing battle. And, then, things changed…again, like they are prone to do, and, the heart, it knows, and it remembers, and it breaks again, all over again. When will things really change for the better and when will this war end for our children?
I had planned to share with you the beginnings of Evan’s diagnosis and how things continue to change for us-- with every stoplight into a certain business, the memory of it all comes crashing back again...his pain and the diagnosis. I had words written about the closing of the storefront where his body lay on the floor in pain and however much I hoped the store closing would erase the memory of that fateful day, I had only hope and every reason to believe a closing shutter wouldn’t take away the memory. It takes a thousand “attaboys” to erase one painful memory.
In the world of cancer, the monster is real and he can kill you. Day after day we hope for a cure and we press on. Week after week, hopes are dashed, only to be rebuilt. Today’s’ post is not for the faint or for those of you who privately tell me “this is all too sad.” This is your cue. For the rest of you who trudge this path with us, week after grueling week, this is a three Kleenex moment and one that dare I say, truly impacts greatly. Although the feelings may be painful, they are beautiful sentiments that, in an odd twist “…we must embrace… for to hold what is not here is to truly experience what is here.” T. Dumm
Words don’t come for me this week to relate to you or share with you a glimpse into our world. I therefore offer notes from my Inbox. There are those this week who have said it better, even as it should never, ever, have to be said. The world has lost greatly and been forever changed...again and importantly. Rest in peace, Coleman and Dante and Diego and soar, like on wings of eagles. Heaven is a better place and we are better persons for having shared your journey. No more pokes, no more chemo and sweet, Dante, you need never fear the dark again... Little ones who have earned their angel wings leaving behind family wishing for one more…kiss, smile, touch, moment.. Gone way too soon, these little lights extinguished.
Our deepest sympathy to Caden, Coleman’s twin brother, left to find his way in this world without his brother and to the families of these precious children and, yes, to all who fight and who ask questions about the death of their friends. Please remember these children in your prayers, and pray this week especially for Buddy and Zachary, who could use a few extra amens.
From Dante’s Dad:
As usual he chose his own time, and managed again to do so with a dignity and symbolism all his own. Dante was our Lord of Misrule, who died and shook our entire world - but somehow made it better for having been in it. I don't know how the weather is where you are reading this, but here at home the sky has been crying since Dante left us. He went with the gentle strength and iron will he has always displayed during his journey.
I recall the room getting brighter; I must have opened my eyes wide in surprise and looked to his nurse then to Dante pointedly. There was time for Jo to put everything down and climb up onto Dante's bed. She held his right hand in her left, and I held his left sitting in a chair by his bedside. I rested my left hand on Jo's leg, completing our little circle. He took three, maybe 4, more breaths and then simply stopped. There was no struggle, no distress, and no pain.
I was so proud of him and grateful for how he faced the end. There were so many ways it could have been much worse. The ladies from Child Life came to do impressions of Dante's hand, handprints in paint, and thumbprints in ink. We washed and dressed him in a long-sleeved onesie, Thomas pajama pants, and car socks. We got to hold him for the last time and remind him of things he had been told a million times, but never enough.
My hardest moment was holding him, cradling his head on my shoulder and showing him for the last time the paintings I had made for him, telling him "Daddy loves Dante," and knowing that he couldn't answer me. It was nearly 3pm by the time the undertaker came to pick Dante up. I gathered him up and arranged him on the gurney - having been there for his first and final breaths and being the first and last hands to hold him in this world. My boy and my blood, full circle, as it should be. This is not an ending... others are still fighting and Dante's memory will not allow me to forget them.
We left quickly, eager to be "out" and on our way home. The drive home was uneventful, except that I was keenly aware of Dante's empty car seat and took special notice of a passing train - trains will always remind me of Dante, I think. And planes, cars, trucks, bridges, the moon, the streetlamp in front of our house that is also the moon, trees, "mo' tchees"... basically everything visible from a car window.
It was difficult to unlock the door when we got home. Almost like we weren't allowed in without Dante. The house was in good order, trapped in the bubble of time between Thanksgiving and Christmas. I walked into Dante's room, looking over all his favorite toys, readjusted his bed sheets and comforter, and switched off the base unit of his baby monitor. We're upset, but we are so proud of how Dante handled himself, and so happy that the day of his passing was a GOOD day.
I keep thinking of all the things I wanted to share with Dante that I was supposed to teach him and never will be able to. I never got to take him to the beach, to an aquarium, or on a boat. I love the water, and bath time used to be our special time together before he was sick. He used to splash and kick so much that the entire floor and halfway up the walls would be wet. After he got sick and had his central line placed, he didn't like the bath anymore, and I stopped washing him at home. I don't remember alot from before he was sick; it took up our entire lives when we found out last December.
I was supposed to teach him math and how to fish. I will miss chasing him around the house and tickling him, throwing him on the bed into a big pile of pillows in Mommy-Daddy 'oom. I miss cooking dinner while Jo was at work, with Dante watching from his high chair & Avril Lavigne's "Hot" music video on the computer. The closest Dante got to running was when he used to take a few fast, stumbling steps into the living room, then throw himself headfirst over his foam, fold-out sofa onto a pillow. Jo nearly had a heart attack, but I busted a gut laughing at him (and encouraging him).
I always imagined having really engaging conversations with him as he got older and figured things out. I never got to play in the snow with him - we never had any of consequence during his three winters. No snowmen, except what he saw on TV or coloring books. He was never able to appreciate a Broadway show, though he was present for Wicked in-utero. He never got to grill with me and enjoy a good burger or steak. No sandcastles or fishing. Never slept in a tent. Never had the experience of ordering the same Chinese food over and over, because you always "want to try something new, but can't decide" and go back to the same.
Daddy loves Dante... the rest is silence.
1/6/2009 8:33am
From Coleman’s Mom:
Today the world may have cried a river of tears for a little boy’s life that ended way too soon, but we believe Heaven is REJOYCING over Coleman’s job well done. Coleman was an amazing child of God and we were so honored to be chosen as his parents. He left this world at 10:45 last night- he fought HARD until the very end, not wanting to give up, but finally letting go. He was a warrior and a hero our hearts will forever miss. We had the most glorious five years together- a gift we will never forget.
A quick story. :)
One day Coleman heard someone say they were mad at God. He didn’t say a word, but later came to me with this complete look of disbelief on his face and asked, “Mommy? Did you hear them say they were mad at DOD? WHY would they say that?” He couldn’t even fathom the thought. Then he raised his little eyebrows and said, “Well, I hope they don’t say that in PUB-WIC (public)!” and walked away. He knew there were some things he could not change, but HIS faith never wavered.
Lots of people have mentioned their anger toward God …how can He
let this happen when so many people have been praying for Coleman?
Why didn’t he answer our prayers?
I just can’t be angry at Our God who sent Coleman to us in the
first place. Coleman was a child of God, WE were chosen to be his
parents- and how blessed we were. Maybe my feelings will change,
but like Coleman, I can’t imagine being angry at God.
Would we have loved to have had more time with Coleman? YES! I want him back right now, but I know that’s the selfish part of me talking. I know I will hurt more than I can ever imagine in missing him…and I know I will have MANY days of heartache and anger, but my anger is over the fact we live in a world where we can do so much, but still do not have a cure for this horrific disease. Children are paying the price for that. More on that will come.
I guess what I’m saying am I known for a fact, Coleman would NOT want us to be mad at God. He taught us so much in his time here. His lessons will go on for a very long time. He knew where he came from and he knew where he was going. My heart aches for more time, but I’m SO thankful for the time we got with him, and we know we WILL be with him again. God doesn’t always answer our prayers in the way we want him to…HIS ways are not ours, and that’s hard to accept, but true. It doesn’t mean I don’t question it- it’s hard to understand, but one day we WILL know.
Thank you for your support in these changing and trying times and in all the moments in between. As one mom put it this week, having our Carepage family in our corner is like a Verizon commercial. Each time we enter the hospital, we ‘see’ you outside, strong and in our corner and it makes a world of difference.
xoxo,
mom
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