I read a great article last night sent to me by my friend Jillian, who lost her son Patrick to CDH two weeks after Bobby. Jillian and I got to know each other virtually through one of the CDH Facebook groups setup by the CDH UK Charity to support families affected by CDH. The article refers to the five stages of grief by Elisabeth Kübler-Ross; denial, anger, bargaining, depression and acceptance. They were apparently intended for people facing their own deaths, and Kübler-Ross later went on to apply these same five stages to the bereaved. The author of the article, Claire Bidwell Smith, who specialises in grief therapy, says her bereaved clients aren’t bargaining; they’re anxious. Bargaining they say is seeking ways to avoid having the bad thing happen. I’m not sure it applies to our situation; so I tend to agree with the author. Four and half months on and I am experiencing anxiety; something that I have not been challenged with before now. I have death anxiety; I don’t know how many times my daughter has died in my dreams and who will be next. I’m convinced I am going to die young; either that or my husband Des will drop dead before me. I’ve read enough to know this is normal and this will pass; just like the denial phase. This was the haze I described previously, my brain being disconnected from my body. Oh and my reliance on that envelope.
I’m like a toddler learning to walk; falling down and having to get back up and try again. I’m trying more and more to reintegrate back into the real world; and I never realised this could be so hard. Mothers who lost their babies, and others who have experienced loss, speak my language and they just get it. People, even my own husband, look at me strangely when I attempt to explain the complexity around reintegration. Sadly for him he had to reintegrate two weeks after Bobby died.
Bobby’s loss has made the ‘real world’ increasingly daunting where there are constant ‘triggers’ and it’s not a totally safe place for me right now.
It’s a place where there are women who had their babies around the same time as Bobby and right now I cannot face them or their beautiful babies. My anxiety is the fear that it will always be difficult seeing them. I have faced these situations already and they have cut the legs from under me.
It’s a place where I now have to answer questions about the number of children I have and it’s a constant reminder that Bobby is not here. The school gate is terrifying; yet I need to meet people for Lily’s sake and have play dates. It is overwhelming and I know it will get easier.
It’s a place where I feel vulnerable; I have no control over people’s reactions when they see me. Each day I wonder who will I bump into; will it be ‘the first time’ as first times are not easy. Before we lost Bobby, seeing people was a big love of mine, not a big fear. People openly admit they haven’t had the courage to contact me; and when I look at it from their perspective, I understand. But I am an outgoing, sociable person who loves being around people; so I find this hard and isolating. Yet, I understand the intentions now that the anger has passed somewhat. My body language recently was a frightened and terrified one apparently; so much so, someone chose not to speak to me. They believed this is what I needed, with the very best of intentions.
It’s a place of unknowns. I could meet someone who has heard my sad story who so kindly puts an arm around me and says how sorry they are. The kindness is so appreciated and yet it reminds you of your loss. Then there are people who don’t acknowledge for fear of hurting you and that also reminds you of what you have lost. All of these scenarios have happened. Acknowledging our loss is definitely the better route but it is still incredibly difficult. There is just no getting away from it and that lack of control breeds anxiety.
It’s a place where there is stress and offloading and I am frustrated that I am not quite able for this at the moment. People have always come to me for help and support; right now I inhale stress because I am vulnerable and my pores are open. I’m determined to work through this because it is part of who I am and I know this too shall pass.
So this week’s revelation is about anxiety and how hard reintegration really is. I hope by sharing this revelation, people may understand how hard this is for people who are grieving a terrible loss. If you want to help someone in this situation try hard not to make them feel they are being ridiculous (watch your facial expressions!). Just listen, don’t listen to reply, listen to truly understand and empathise. Most of us are problem solvers and we go into problem solving as we try to listen. Try not to fix because this phase of anxiety and fear for the bereaved will pass. We will be able to reintegrate and we will survive. Try not to assume that we will always be like this because you worry. We won’t always be fearful because this too shall pass.
Hope got us through Bobby’s diagnosis until his death. Hope has brought me through the months since he died. Hope tells me that this phase of fear and anxiety will pass and it is indeed another phase of grief.