I find myself pushing thoughts about mortality out of my head so often these days. I can be cooking dinner or pushing the kids in the stroller and all of a sudden thoughts about Will's "outlook" enter my head. I say "outlook" because I can't bear to think about what that really means...how long Will is going to live. As I think about that or even write those words, I realize what a can of worms this type of question opens. None of us are guaranteed anything in this life. As surely as I worry about Will's mortality, perhaps I should be worried about my own? No one is guaranteed anything, but I can't help but focus on Will since we were so worried about him even surviving the first few minutes outside of the womb.
When I think back on where we stood in this journey just a few short months ago, I realize that we have already been given more time with Will than we ever imagined we would have. When I was pregnant, I was afraid to tell his big sister, Emme, too much about him. She kissed my belly every night and told her baby brother she loved him, but I never talked to her about meeting him or bringing him home. I bought the smallest pack size of diapers I could find. I washed baby clothes, but I tucked them away in a drawer so I wouldn't have to see them. I didn't decorate a nursery for him. I was too afraid to get attached to the idea of him being alive. I thought it would be too hard to come back home without him if he didn't make it.
Now, I find myself doing all of the things I never thought I was going to do with Will. I'm planning his nursery now and hope to have it ready for him in the next month or so. I am buying his diapers in bulk! My heart swells with joy when I look at him. I cherish each bit of baby babble that comes out of his mouth and become a puddle of mush when he smiles at me. It seems that the more I fall in love with this boy the more the fear of losing him begins creeping back into my mind.
We still don't have a diagnosis for Will and, frankly, I am not looking forward to getting one. I feel that I must be in a state of denial in some ways. He's doing so incredibly well. He seems to be growing like a weed and I feel like his chest size has increased. He isn't showing any signs or symptoms of distress and I thank God each day for that. Part of me wants to continue living in this state of ignorant bliss. Not knowing his official diagnosis means I can continue loving him without the constraints of medical jargon and what ifs. Right now, all I know is that he is here and he's doing incredibly well. I'm not ready for a doctor to tell me that he has _____ and he may not ______ or he may _______. Does this make me a bad mother? Does this make me negligent?
The phone will likely ring any day now from the geneticist's office. They will be calling to set up our appointment to have us come in to review Will's genome results. I dread that phone call. I dread the ride to the appointment. I dread feeling that lump come back up in my throat. I dread the palpable fear that is going to consume me once again.
Mortality. What a word. We're all caught somewhere in the middle of being born and dying. We all have our trials and tribulations in this life. I just can't stand to think about this word in terms of my children. For the parents that have had to deal with this firsthand, I can't even begin to express my feelings to you about your loss. I have only thought about losing a child. My heart breaks for you.
I realize in saying all this that it sounds negative. BUT, it's how I feel. I still know that God has a plan for Will and he has a plan for our family. I don't know how our story is going to end, but I truly am doing my very best to keep negative feelings from altering the immense joy we have each day. I just can't help but worry about the what ifs...after all, isn't that what mothers are for? :)