Superman PJ's and Blue Guitars

Hanging the star with Daddy

Today is one of those days when I looked all over for you; you were nowhere to be found. I looked for you in your bedroom, my bedroom, Evan’s bedroom, I checked Facebook and wandered around the house aimlessly and you were gone. Just gone. And the energy left my body and the air left my lungs. I felt like I couldn’t breath and I didn’t have the energy to do anything else. I hear people complaining about the weather, their cars getting stuck, the garages snowed in and I thought about the times we spent at the hospital on these days. I would cuddle up into your hospital bed with you and look out the window and I felt so secure. You were in my arms, we were in a safe place and I knew I was the happiest I could be right at that exact moment. I knew that I understood happiness. That despite everything going on around me I could be happy just having you near. The blowing snow, the cold wind and the sounds of the blizzard make me feel so alone and my arms have never felt so empty. I feel like I want to drive the Children’s hospital and try and find you there.

Today Evelyn told me she visits you through cloud tunnels that go to heaven. Oh what I would give to fall into a cloud tunnel right now, just so I could see your smiling face and maybe feel your skinny arms around my neck. I wish I had the innocence of a child and maybe I could see you, sense you. But instead I am left with my adult inhibition and my unbelief.

What a great moment…...

That is a smile of pure joy. He loved his cousins so much and
just being in their presence made him smile

Yet I also understand that I can only know this type of pain because you did teach me such amazing joy. I feel the level of sorrow is equal to the level of joy that has been lost. So in a very weird sense I should feel enlightened by the pain – it shows me how great of a loss your shining little life was. And i should be so lucky to have known this type of love. Some days I am so grateful for the ‘lessons’ we have been taught and learned over these past few years. I see many people ‘living life’ with their children, their jobs, their houses, they are busy and then busy some more. We were these people. We knew we needed some counseling, we needed support in our marriage, we needed to seek out friends who would support us in our effort to become a stronger married couple, we needed to find a church that suited us but we were ‘too busy’. Too busy to step out and look for this help. In these past years we have been forced into situations that required us to seek this help and face the problems head on. You can’t hide from grief or from the weaknesses in your marriage; they grow exponentially when they are avoided.

Is this true love or what? 

The grief I feel because you went to heaven will never diminish because the joy you brought to me can never be altered or reduced. I will never get used to you not being around and I will never stop missing your silliness. But new joy will find me and I trust that God will fulfill his promises. When I am missing you the most I try my hardest to think about heaven, I think about the moment you first experienced its glory and wonder. I would have loved to have seen your face the moment you met Jesus and the peace you felt as you left the body that let you down so horribly and entered into a heavenly body that was strong and able. I KNOW I am going to hold you again. 

Superman pj's and a swollen chemo face

I had a vision at church the other night when they were signing your song, “Our God”, I closed my eyes and immediately a picture of you in your superman pj’s (the ones you used to wear to the hospital) standing on an alter with a beautiful blue guitar, and you were so intense on the music you were creating. You were signing with all your heart and together with the crowd you were praising Jesus and his faithfulness. There was no question about goodness or sadness just pure praise. And I could hear you begging me, “Mommy please sing with me”. I opened my mouth and tried to get some words out but sobs heaved from my heart and I just mouthed the words instead.  I know you want goodness for us and you want happiness in our hearts. Everyday I try to think about how I can honor you, your name and your fight. I am hoping one day it will come to me and I will step out onto that proverbial ledge and fly the way God intended.

I love you so much Christian. I wish I had a thousand pages with a thousand “I loves you” each. There is no measure to the love that a parent has for his child so there is no measure for the grief they experience when a child returns to his heavenly home. Through the darkness I see God guiding us to find ways to make this life better for others. Especially around this season when I am missing you so much I want to pretend it is not happening. But to ignore Christmas is to ignore the birth of Jesus Christ and to forget everything that you loved so much. The spirit of Christmas was all over you and I know that you are encouraging your daddy and I to try and make this time special for Evy, Ryan and Joshua. I can see your gigantic smile and silly laugh when we enjoy ourselves. I know you are laughing too when Ryan comes over and asks me to tickle him, “tickle me mommy!”

 Memory tree ornament we hung for you at the ACH

Even though you have been gone for almost year the days almost seem more difficult now than when you were first gone. Last year at this time you were getting so sick and even though we hoped until you took your last breath, I wondered if I would have to say goodbye. All of the thoughts and emotions I experienced in those last few weeks are replaying themselves in my head like a tape that I can’t shut off. I am so grateful that your pain is over, you are now limitless and spend your days walking the streets of gold. Evan is convinced you are playing with the lions, tigers and elephants. Ryan is sure you have an amazing game of street hockey that never ends. I thank you that you stay close to us. I love you all the way to the ice planet Hoth and back. Please keep guiding, guarding and protecting Luca with your precious hands. Merry Christmas Mr. Grinch, “MAX GET MY CLOAK!!!!”