My son died thirteen years ago today.

It’s strange; sometimes the anniversaries bother me, and at other times I don’t think about it very much. But last night I had such dreams, and I find I can’t concentrate this morning.

I tweeted that, and @HisFireFly tweeted this back:

Maybe God desires your concentration to be on your memories, there is much to remember…

Perhaps she’s right. I’ve been having a running conversation with Christopher in my head all day, and so maybe I’ll just write it out. I keep trying to turn it off, but perhaps that’s not the right thing to do. Maybe I need to walk through this today. It’s been a long time since I’ve done so systematically. So here goes.

Hi Christopher,

I can’t stop my mind today from going back thirteen years ago. Imagine! You would have been a teenager now. But back then, on September 3, you were in the PICU, recovering from massive heart surgery four days ago. I was sitting with you when I noticed that your blood pressure was down to 54 over something very small. No one else caught it. The nurse was preoccupied with someone else, so I tracked down a doctor, who yelled at me for bypassing the chain of command. But when he came over he was quite alarmed and immediately gave you two units of fluid. And he had you re-intubated. That broke my heart, because we had been so excited when the tube had come out that morning and you were breathing on your own. It just seemed so barbaric to stick it back in.

I used to be able to remember your cry. I heard you cry for the last time right before they stuck that horrible tube back in, but I can’t remember now. That bothers me.

Daddy and I visited you together that night, which was unusual. Usually we came in alone since one of us had to be with your sister, but that night Nana had her and we both went in and sat with you. We left at 9:45, and on my way out of the ICU my last words to you were “Mommy loves you, sweetheart.”

At that point you were doing well. Your blood pressure had come back up and you seemed all right. I actually went to sleep peacefully.

The phone rang at 1:45 that morning. I knew something was wrong as soon as it rang, and I was right. I woke Daddy up, and called Judy who lived in an upstairs apartment to come and sit with Rebecca while we rushed down. We didn’t have a car, but it was a 15 minute walk. We made it there in 7 I’m sure.

When we got the hospital the doctors put us in a little waiting room, and came in to tell us that your heart had stopped and they were trying everything. I told them not to hurt you, and if it seemed like it wasn’t going to work to stop. Your little body had been so tortured already.

They brought your body out a half hour later. They had wrapped it in a blanket, and your little tongue was sticking partway out, the way it often did. Your blonde hair was wisping over your forehead.

But you weren’t there. It was the worst feeling of my life. I so wished I had never held your body like that, because it wasn’t you. I knew you were gone already, and the whole experience felt so empty. Daddy needed it, but I didn’t. I wish my last glimpse of you was when I said, “Mommy loves you, sweetheart.”

Instead I found myself saying, over and over again, “I’m so sorry.” I don’t even know what I was sorry for. I wasn’t sorry for you that you had died; I knew that you were with Jesus, and it was so hard to see you in pain with all those tubes and so blue, and I knew that now you would be able to run and play and do all the things little boys are supposed to do. But I was still sorry. Sorry that I couldn’t have been there to comfort you. Sorry that I couldn’t hold you after your surgery. Sorry that I couldn’t have spared you all of that. Sorry that you had to be so tortured. Sorry that I wouldn’t see you grow up.

They cut us off a lock of your hair, and gave us your handprints and footprints.

I didn’t feel like I had said good-bye then. I had said it earlier. The day before your surgery, when the doctor came in to talk to us, he said you only had a 25% chance of making it through the next day. We had thought it was closer to 60%, but you were so small, you see. You had lost so much weight since your birth and you were down to four pounds. Our friend Tommy came in to take photos, in case it was your last day. Here’s us together right after I heard the news:

That night I couldn’t sleep, and I walked to the hospital at 5:30 a.m. to sit with you for two hours before surgery. That was when I really said good-bye. I sang with you and prayed over you and held you in my arms, even with all the tubes. I told you that it was okay to go. I told you that Daddy and Rebecca and I would be okay, and if it was just too hard you could go to be with Jesus. I told you that I so wanted to watch you grow up, and to hold you and to love you and to be your Mommy, but I knew life was so hard for you, and you were having trouble breathing, and I told you that it was okay. I loved you, and I would always love you, and I would be with you again.

They let me walk with you down to the pre-op room, and I was the one who handed you over to the anesthetist as they took you in to surgery. Passing you over was the hardest thing I ever did in my life. I really didn’t think you’d come back to me. I felt like I was handing you over to your death. Daddy and I had prayed over you in that room, and Daddy gently lifted me up and helped me hand you to her. She was a nice woman. She wore a little surgical cap with teddy bears on it, just like Auntie Allee wears. She smiled and told us that they were going to do everything and that they would take care of you.

It was a gift when you made it through surgery, and then made it through that night. And the next night. And the next. I guess I thought we’d really have you now. I started letting myself dream about you growing up, and what Rebecca would be like playing with you, and how you would laugh.

But it was not to be.

I don’t know how to feel now. It’s been so long, and I share your story with others everytime I speak. I know you made such a profound change in my life, and in Daddy’s. Rebecca was at summer camp this year and she always spends a lot of time with the Down Syndrome kids. They love her. You would have, too, and one day you will have time to get to know her.

When Katie was born she looked so much like you (though she was twice your size!). She had the same wispy blonde hair, the same blue eyes. She gets sad that she never shared this earth with you the way Rebecca did, I heard her telling a friend a few years ago that when she gets to heaven you will be the first one to greet her, to show her around. You will have such fun with her.

I find it harder to remember you today. It’s just fading so fast. I keep replaying certain moments in my head. I remember when you got feisty when they came to do yet another blood test, and even though you weren’t feeling well you kicked that nurse hard for someone who was only 4 1/2 pounds! And I love the look on your face when they gave you that gross medicine. Auntie Allee caught it in a photo:

But lately I’ve been thinking less about those moments and so much more about heaven, and I know that when I get there I’ll get to know you so well. It’s not that I’m moving away from you, even after thirteen years. It’s more that I’m moving towards you, and I’m closer to seeing you again now than I was then.

I’m so blessed that I got to be your mommy. I did sing over you, and cuddle you, and pray over you, and kiss you. I wish I could have done more, but that time will come.

It’s just that sometimes I feel so sad, and today it seems worse than usual. I’m remembering that day. It’s 10 in the morning now. Back then I was making phone calls, trying to find a funeral home we could afford. We had already called Grandma and Grandpa early this morning and told them that we wanted to bury you in Belleville, and Grandpa was out already looking for a good place. He found a perfect one; the most peaceful cemetery just outside the town.

That doctor called around 10:30 to apologize for how he yelled at me the day before. I found out later that he had lectured his residents to not rely on nurses but to listen to parents’ concerns, since it was me who had caught your deterioration. He actually had a lot of grace to make that call. It must have been hard, and I respect him for it.

The minister was due at our apartment at 11 to talk about the funeral. Your sister was playing with her friend Alison, Judy’s daughter. They were three weeks apart. I don’t think Judy had had any sleep after we called her in the middle of the night, but she was there first thing in the morning to watch Rebecca. She found me recently on Facebook, and it was good to reconnect.

Oh, Christopher, I miss you. A few weeks after you died Auntie Allee had her pictures developed, and there was one that made me burst into tears. I was holding you, and your eyes were open (you were so rarely awake), and you were looking right at me. I am so blessed to still have that picture.

And I am blessed to be your mommy. I know that if you had lived you would have always had health problems, and been short of breath. Today I imagine you playing baseball, and running, and singing, and laughing. I know you are with Jesus, and He loves you so much. I will join you someday, too, and then we will finally be able to laugh together.

UPDATE: I’ve since written a post that has gone viral about what grief really looks like. It doesn’t ever go away, it just changes. And that’s okay. Read it here!