March 5

Dear Christian

I am sitting here on the floor in our vacation house in Phoenix, in the corner of the room, and you are on my heart so heavy today. Some days are better than others – today was a struggle. Everybody grieves differently and in different stages. I have been trying not to look at your pictures or think of you too much as the pain is just so overwhelming and I don’t know what to do with it. But today your daddy was missing you so much. He told me he wished an angel would bring you back to us. This set me off on a sorrowful episode of missing you more than my heart could handle. I had a vision of the doorbell ringing in the morning and when I go down the stairs to answer it you would be there, waiting for me. I would ask you where you have been and you tell me, “I was with Jesus”. The vision only reminds me that I can’t have you any more, I can’t return your smiling face with love, I can’t hold your little body. So instead I decided to write you a letter and tell you how much I love you.

Most days when I am sad for you, or am feeling crushed by all that you had to endure over these past few years, I like to think of you in heaven. I find peace thinking of the glory you are amongst and the notion that pain is no longer a part of your days. I imagine you smiling and enjoying your freedom. I imagine you looking down on your family and loving us from afar. I wish there was someway that I could feel this love in a tangible way. Today your daddy and I went on a hike and we talked about you a lot. We talked about how much time we spent in the hospital over these past few years. When you were first sick you were just a little boy, so small and innocent. Daddy always stayed with you because mommy had a new baby to take care of at home. You always kept him awake till the wee hours of the morning. Playing DS games and watching old Spiderman and Batman cartoons. But as time wore on you grew up so fast. You became a little man, a wise old soul that touched my heart so deeply.  I try not to cringe when I think of the days that were such a struggle for you, I don’t want to think about them because I know you don’t consider them either. You are not sad they happened and so I shouldn’t be either.

The thoughts I try to get out of my head the most are your last few days here with us. We prayed and believed so hard that you were going to be healed that it was such a shock when Nurse Megan told us you were taking your last breaths, that I should get up into bed with you and hold you. I can see your skinny face covered by your oxygen mask, your whole body desperately trying to take in each breath. We had just finished giving you a bath and change your diaper. You were clean and ready but we could tell by the way you went limp when your daddy lifted you out of bed that your soul was already gone from your body before you actually took your last breaths. So I like to imagine that while I cried and prayed holding you those two hours after you passed away, that you were holding me. That you were stroking my hair and touching my face and trying to tell me that you were so good. That the pain was gone and you were amongst glory and greatness. That Jesus himself carried past the pearly gates and welcomed you. That you felt nothing but love and pure joy, like no love or joy I could ever imagine.

Now I am trying to find a way to reroute the love and affection that I had for you into something good, into Evelyn and Ryan. I am trying to find ways to remember you without breaking down into a million sobbing tears. Your daddy and I talk about you every chance we get, to anybody who will listen. We want everybody to know how proud we are of you, how proud we are that you fought and fought and fought. It helps to talk about you to other people, even if it makes me cry it feels like you are still around when we speak your name. Evelyn often tells me of things you guys have done or places you have gone even though you are not here so I know that she plays with you in her mind. The other day she told me you were far away in unicorn land and there were so many games that you guys didn’t get a chance to play. I pray you are watching over her, easing her pain that she doesn’t understand or have the emotions to express.

I miss you Christian, to the million stars in the sky and back.

Love Mommy