Friday, July 17, 2009

So Many Layers of Grief

I’ve been reflecting over the past few days on the multiple dimensions of our grief. They range from the mundane to the profound, and even sometimes emerge in unexpected ways.

Take yesterday morning, for instance, when Matt and I took Ellie to the orthopaedic surgeon for what was to be the final check-up on her hips (aside: For those of you who don’t know, Ellie was born with hip dysplasia, had to wear a brace for nearly a year when she was a toddler, but appears to be totally fine now). We were supposed to have a simple X-ray, a quick chat with the doctor, and be out of there. For reasons that may be varied, Ellie was adamantly opposed to having the X-ray; she got very, very upset and said she was scared to lie on the table. The X-ray technician seemed a little annoyed by Ellie’s behavior, and suggested that sometimes with children of this age it’s necessary just to hold them down and push through it. Matt and I glanced at each other, me on the verge of a breakdown, and instantly we knew we were on the same page: no way were we going to force our little girl to do something she perceived as scary right now – not in the wake of this profound loss and trauma. Maybe she was just being a petulant, stubborn 4-year-old, but we felt like it was something more…that her behavior was in some way related to her recent experiences in hospitals. In any case, we didn’t want to traumatize her any further, so we ultimately decided to leave. I walked out of the building feeling sad and worried in new ways.

Another layer of this grief is the loss of what we envisioned our family would be. Frannie will not be with us (which is hard enough to swallow), but what’s more is that we won’t have any additional children, at least not biologically. While other families who experience the loss of an infant to random causes may go on to have healthy babies in the future, this really won't be an option for us. Since Frannie’s death, we’ve learned more about her particular disorder, CPS deficiency ( It is genetically transmitted in an autosomal recessive fashion, meaning that Matt and I are both carriers of a genetic mutation that we each passed on to Frannie. The risk of Matt and I producing a child with the disorder would be 25% in any given pregnancy, and we feel strongly that this risk is simply too high. While pre-natal diagnosis is possible, thus enabling immediate life-saving treatment in the hours after birth, CPS deficiency is still a chronic condition that is very difficult to manage, that causes immense suffering for children, and that often still results in serious developmental delays and death of young children. We are not willing to risk putting a child (and ourselves) through that pain when we have to ability to avoid it.

Finally, I can’t escape this feeling that the world is designed to torment me right now (even though, rationally, I understand that this is not the case). It feels like the number of pregnant women and families with healthy newborns has increased exponentially over the past 2 weeks; I see them everywhere, and sometimes I don’t just feel sad, but also angry. Yesterday Matt and I were in a coffee shop and it so happened that a guy was sitting next to us, working at his laptop, with a baby in a stroller next to him. The guy (presumably the baby’s father) went for long periods of time without so much as a glance at the lovely, cooing baby. After 15 minutes or so, the baby got a little cranky, at which point the guy reached over and attached a little toy bar to the baby’s seat and then propped up a bottle on the toy bar so that the baby, who didn’t yet have great hand control, could “feed herself.” The guy then went back to his work, without a word. Ordinarily, I might applaud this guy’s mastery of multi-tasking, or think how clever it is that he came up with the bottle-propping trick. Instead, at this moment I wanted to scream at him for being negligent, for not understanding how precious this time is with his healthy baby. I wanted to tell him how undeserving he is. And then I wanted to punch him. Totally unfair judgments, I know. But these are the real manifestations of my grief.


  1. Thank you for your raw honesty and letting us share in your sadness, rage, disbelief. AJ and I continue to think about you daily. Know you are in our thoughts and prayers.

  2. the service today was beautiful. thinking of you.

  3. I think that was one of the hardest things for Toby and I and it still is...the vision of what should be. The first year with all of the firsts, x-mas, birthdays, mother's and father's day, etc is the hardest. Because of course you imagined these already in your head. I always found the days leading up to the day were worse than the actual day. Mother's Day of course was the worst.

    I also felt that everywhere I turned someone was pregnant. I couldn't see twins without just staring at them. I didn't care what the parents thought...I just imagined what my life would be like if I had those (twin babies). I work in a clinic that has an ob day on Thursday. It made me so mad to see pregnant ladies...I was jealous, sad, happy and angry. I wanted to be them and I didn't want them to be pregnant. I felt that if I couldn't have my babies that no one else should too. It took a long time before I could see a newborn baby or pregnant lady and not feel these emotions. Even now when I see twins I just stare. Sometimes at family gatherings where the little ones are playing I think about how my little boys should be playing with them and it makes me sad.


  4. You are not alone in your anger. Although, I don't know the exact pain that you are experiencing, I remember being extremely jealous when I saw pregnant women after my miscarriage. This may sound a bit ridiculous (or not) but I miscarried around the same time that Nicole Richie gave birth and all I could think was "She gets to have a baby. Are you kidding me? She drove on the wrong side of the highway, high on drugs, but she gets to have a healthy baby??? Where is the justice?"