The worsts.

All right fine. This is not the very worst. In the writing industry we call that a tease. The truth is I don't have language to write the very worst, the worst is gutteral and unthinkable and mothers don't share that with their babies.
But right now on this day, I can tell you about when your big brother died. I remember thinking about amputees and how they describe feeling g their missing limb. Like how when the light is off in my bedroom I have such a strong urge to quietly go in so as not to disturb your sleep. I always make it (in my mind) to the point where I want to peek at you in your crib, and by then I am (physically) to the middle of the hallway and I can actually see your crib where I am painfully aware that you are not there and you won't be anywhere in the room.
It's the same story when I walk into the house and if any adult is here I am inclined to ask how you did and where you are. Or maybe I have planned a day out of the house for our family and I want to pack you a feeding backpack. With your brother, I always a fluttering thought that if I went to see his nurse, Lizzie, she'd let me take him home.
It feels crazy, certifiable. I feel like I am outside of myself. And I think besides loosing you and loosing your brother the worst is also the fear of loosing myself.

Patchies

We went to the Christmas Carol concert tonight, just like last year. I wore the same shoes I wore last year. I remembered having to take them off in the back of the concert hall last year as I rocked you during the last few numbers. I thought of that tonight while my hands were in my lap. I didn't have you to rock or cuddle or comfort.

I wish you were here to comfort my old broken heart. I wish I still had a beautiful baby boy. You were my serious child.

Everyone who studies genes and diseases has made it clear that we should not have another child. But I dont need a smarty pants to tell me that. Our hearts absolutely cannot break like this again. I cant bear it and I would never put Jocelyn through it again. Ever.

So I am letting my heart fall apart with every child I touch, and every smile any baby shares with me. I'll never see another baby who is flesh of my flesh. It's okay. It's okay. I mean, it's not, but what else should I say?

Patchies, honey, I know you cant read this. You dont even read, I guess. You, my baby son. I am missing you so painfully. There's a tightness in my throat, and it pushes against me and for some reason that makes my eyes leak.
I've been sleeping with Pooh. He's not as long as you or as heavy or as warm... not at all wonderful. But I cant stop thinking about that nurse who liked you so much and always called you "Pooh Bear." She liked you baby, but you were mine. I got to take you home, and I got to love you and feed you and tend to all your little baby needs and all your awful disease needs. And I am proud of that. I am proud that I faced all those awful things for you. I am proud that if you had to suffer the pain of it, that I never shied from the ugliness of it.
I have learned something about death, something very tangible and I wish I had known it for fact so I could tell you when you were here. Baby all that color changing that was going on in your legs and face and belly, that wasnt an infection. That's death. I wish I could have known for sure, so I could have told you, prepared you, let you know what was happening. I'm sorry honey. I hope you werent too scared. I hope me and daddy were close enough by to comfort you and help you through it.
I am so so sorry you never got your voice, son. I desperately wanted to hear you say your sister's name. I wanted that from the moment you were born. But with it all said and done, I wish your voice could have told us your wants and your needs so that we didnt have to make every decision without you. I'm sorry baby.
Daddy and I have learned about your disease, that bastard that lurks in our bodies. And it is excruciating, son, to know that we couldnt stop it, and also that we didnt know it was coming for you. There werent enough answers for us when your brother died. We didnt know it could happen again. I hope you can know and trust that we did everything in our power to make this turn out different.
I think you are happy and healed and wonderful and if given the choice you probably would have no reason to choose this broken world, so maybe you dont want it different, sweetheart. But, I do. Kindof. I want you happy and healthy and wonderful, but I hate holding Pooh at night. He is not warm and heavy and wonderful. He does not lean his warm magical smelling head into me and just rest. that was all you, baby.