Wednesday, March 2, 2011

Talking About The Elephant In The Room

For those of you who read my periodic postings, you know that Catherine - a.k.a. Her Bad Mother - is my daughter and that Tanner is my grandson, and you know them both extremely well. You do not know a whole lot about my younger daughter, Christina - Chrissi - who is Tanner’s mother.

Christina and Tanner’s father separated almost three years ago and since that time she has borne the brunt of the responsibility, financially, physically and emotionally for Tanner. My son-in-law loves Tanner very much but for a very long time he was emotionally incapable of dealing with all of the issues that are involved with caring for a child whose disease is aggressive and terminal.

Chrissi has always been a working mom. Her job is one that is hard on the heart and soul (she deals with the legal side of broken and bitter families). But despite her job, her son’s diagnosis and the breakdown of her marriage, Chrissi has always projected the persona of a confident, totally-in-control, I-can-do-it-myself woman. After Tanner’s diagnosis, Chrissi dealt with the pain of knowing she had to watch her son die slowly, piece by piece, by pushing herself to extreme limits. In her efforts to insulate herself from pain, Chrissi developed a brittle veneer that discouraged any attempt by friends or family to give her the support that she needed. In her mind, Chrissi had to be supermom. She had to be an advocate for Tanner, and for other boys with Muscular Dystrophy. She had to educate the community, the school system. She had to fight for the support and resources that Tanner needed and that she needed. She had to maintain her career. She had to ensure that Tanner’s needs did not interfere too invasively with his siblings' needs.

Somewhere in the constant battles she was fighting, she found an outlet for her pain – running. She became superwoman – a record setting marathon runner (every run was in Tanner’s name and for Duchennes Muscular Dystrophy research). The physical challenges of long distance running masked her emotional challenges.

Every race she ran received extensive local media coverage. She achieved her goal – she ran the Boston Marathon – she was an inspiration! But the higher Chrissi and Tanner’s profile became in their community, the pressure on Chrissi to be supermom correspondingly increased – keep smiling, don’t let anyone know that you can’t be up half the night with a sleepless Tanner and be “perky Chrissi” the next day, don’t let anyone know how frustrated you get when Tanner soils himself just before you are leaving for work, don’t let anyone know that there are times when Tanner's constant screaming makes you want to scream back, don’t let anyone know - don't let anyone know this, especially - that there are times when you wish the end was sooner rather than later because you can’t stand to watch his deterioration, his suffering, his pain.

Supermom Chris – couldn’t let her guard down – couldn’t let the cracks show - what would people think? So she internalized the guilt she had around her “bad mother” feelings and tried harder.

But as Tanner’s care needs increased (he gets heavier and heavier, even as his muscles disintegrate, so that moving him to change a diaper or get comfortable in bed is a challenge, and his bones are becoming fragile and prone to breaking; his leg was broken during that Air Canada mess last year, something Cathy never talked about), Chrissi struggled with her increasing inability to handle his physical needs and the ever-evolving mental health issues that his autism brings.

Nobody could help, not really. She allowed her sister to help, somewhat, from a distance. But she kept me and her friends at bay. Any expression of concern was seen as criticisms of her performance as a mother. She resisted help. She resisted support. She tired, as best she could, to keep her pain to herself. So when Chrissi broke, she broke hard. She had a breakdown last fall and has been on stress leave ever since.

The past months have been difficult for all of us, but they also have been cathartic. The time has brought us closer together, as a family. The conversations Chris and I now have are thoughtful and supportive. The brittle veneer has been shattered and she has let herself be vulnerable. She has opened herself to the love and support of family and friends. More importantly, she now realizes it’s okay to verbalize her negative feelings and her concerns of inadequacy and to accept reassurance that those don;t make her a 'bad mom.'

But it has been a long process and many of our conversations have hurt my heart. When my child sits across from me and says, “Mom, I don't want this – why does everything have to hurt so much?”, I can barely stand the pain. The worst part is that she has been carrying this pain, and especially, this guilt, all by herself for a very long time.

Why do we, as a society, expect so much from those people who face adversity? Why do we expect bravery, sacrifice, stoicism in the face of pain and struggle and loss? Some pains are too great to face stoically. We're only human.

Chrissi still struggles with guilt but she has finally accepted the reality that she can no longer be Tanner’s sole and primary caregiver. She and Tanner’s father are now working together on a plan for Tanny’s care – he'll move into her house and take over the bulk of the physical care; she'll move into the basement that is being renovated, at least part-time - and that in itself is a major breakthrough.

The story is not over, but things are changing and there are no more elephants left in the room.