Dear sweet James,
The last few days have been especially hard. I’m not sure why. Perhaps because this week marks my first “official” week back as a full-time doctor. Even though the previous week, I worked full-time hours, they were relief shifts, and it wasn’t official. Now I’ve signed my new contract for the year, and I’m back to work. Life moves on. This time, last year, I was complaining about my raging appetite and my sore hips, and the inconveniences of pregnancy. This year, you have been born, you have been loved, and you have died. I am still at work…as if you never were.
It’s hard. It’s all hard. Life used to sit so lightly on my shoulders. Everything was easy.
I came home tonight, and it was raining. I am sitting here now, on my bed, listening to the rain. You’re out there, in the chill dark, alone. No one holding you, no one stroking your head, no one playing you music and singing to you. No one telling you how much you are loved.
I know that you’re not there anymore. That is your body out there in the earth. What made you James is gone – out into the cosmos – rejoined the stars from whence we sprang. I sometimes wish that I could join you.
We took your big sister to register for kindergarten today. I remembered what the first day of school was like when I was young – so much excitement. So many new school supplies. Your sister is going to go to kindergarten. When did that happen? Time moves too fast – like lightning. You were here and then you were gone. Did I savor it enough? Did I kiss you enough? Did I tell you that I loved you a million and one times? Did we sing enough songs? Did I hold you as much as I could?
I remember the days right after you were born. That first night, so scared, so many emotions spilling out of me. I was so frightened. What if you died? How would I survive? (And yet, I did. Here I am. Surviving). The fear subsiding somewhat in the days after – becoming a low grade anxiety mixed with my overwhelming love for your tiny, fragile body and your huge spirit- spending all day with you in the NICU. Listening to songs with you, gazing out the window at the gorgeous mountains. Certain songs can take me back to those days in a heartbeat.
How can you be gone? How can all this time have passed? It’s been almost four months since the absolute worst day of my life. Four. Months.
I want to go back in time, hold you once more. Whisper words of love into your wild hair, plant another kiss on your forehead, see your bright eyes looking into mine.
This week, another trisomy mother was told that her baby would be a “vegetable” – that her sweet baby wouldn’t have the cognitive ability to recognize her mother. It makes me smolder with rage. You were not a vegetable. You knew your mommy and your daddy beyond any doubt. I can only hope that you knew our love as well as you knew our faces – that you felt the sunshine of it all around you.
I sat down tonight to write something specific, something meaningful, but all I have today is sadness, little boy. I ache to hold you in my arms. I ache to hear your voice – to REALLY hear it – not just watch the videos of you over and over.
I’ve been feeling guilt lately. Since you died, I’ve realized how “easy” it was to have 2 healthy little girls. Back before you were born, I thought that parenting was hard. I thought it was hard sometimes to go places, to do things. Then you were born, and I realized what hard really meant. I remember taking you places – what a big deal it was, how anxious I would get. I remember being afraid that I’d mess up your oxygen tank or your regulator or your ventilator. It was such a big deal to take you to the work Christmas party, but I am so glad that we did.
I remember an anxiety attack of monumental proportions because I was trying to do everything for you – get all of your medications filled (hard because it was often 2-3 different pharmacies), make sure we were coupaging you every 6-8 hours, making sure your medications were given on time and correctly, scheduling your nurses, your therapies, your doctor’s visits. I was so afraid that I was going to mess something up.
I feel bad for thinking it’s easy now and that you made it hard. I would give anything to have you back, no matter how hard it would be. I’m not a selfless person – not even remotely close…but I would be selfless for you. And yet, I can’t help but sometimes feel relief. Relief that you aren’t having to work so hard just to breathe, to just exist. I watch videos of you, and how hard you worked, every day, to just do the normal things like breathe and digest food and make baby noises and hold your head up. It makes my heart hurt.
But then again, relief isn’t happiness. Maybe I am just appreciating life more, appreciating the gifts of my circumstances, appreciating the time in which I live, the amenities that are such common luxuries, the medical care that helped give us 5 wonderful months with you.
Life is not fair. It’s not fair at all. Tonight, I cried in bed, and I thought about you and about all of the other babies – trisomy babies, premature babies, babies stillborn for reasons that no one knows, children taken from their parents. The world is a hard, cruel place. I used to think it was beauty and joy interspersed with grief and losses. Now I realize that the world is loss. It is always loss. The joy is the brief interlude before the dark.
I miss you, James. I miss you so terribly.