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.


  1. My heart continues to hurt for Chrissy. And for you. But mostly for Tanner. Give that boy a kiss from the crazy lady in Alberta. Much love to you all.

  2. Your story represents similar untold stories, similar pain and similar struggles all over the world. Why do we feel that admitting we need help and that we can't do it alone is weakness of some kind?

    Your child is lucky to have you... you aren't that bad... obviously

  3. Just sending best wishes to you all.

  4. "Some pains are too great to face stoically."

    Yes. This terrible thing, this enduring the worst, is not something to be done alone.

    Thank you for sharing this. It makes me feel less alone with my messy, ugly, frightening feelings.

  5. I'm so sorry that she felt the need to keep up the supermom facade for so long. It breaks my heart. I am glad that she is learning to accept help. That is something that is SO hard for so many moms. I'm amazed by Tanner's story and Catherine's fight for him. I'm sure Chrissi is even more of an advocate for Tanner than Catherine, which makes Tanner a very lucky and loved little boy.

  6. Thank you for posting this. No one should have to bear so much alone.

  7. I think the parents/caregivers try to live up to these heroic personas that society and the media create ideals for, by glorifying and deifying others that do it. I think it comes from a good place, but it certainly must create a bar that is almost too high to live up to. Much care, many hugs.

  8. I so get what Chris was trying to do but the reality is that she is really fortunate as when that break did come she had you and others who love her dearly support her and Tanner. No one should have to bear the difficult days of life alone.

  9. What your daughter is going through is the hardest thing I have ever heard (and I am a baby lost parent, so I *think* I know from hard). Your family continues to amaze me with their grace and strength; I faithfully read (and erratically comment) on HBM's blog.

    I agree with what @natalie says above: we mothers/parents feel that we have to present the "strong" face to the world -- otherwise we are bad parents. It's hard to ask for help; we really feel that we should be able to "do it all". But that's not the reality for most of us. That's hard to admit. It's not surprising that Chrissi, who is facing more than any one person should, took that feeling to the extreme.

    You and your daughters and your families are in my thoughts and prayers often, even though I am an Internet "stranger". God bless and keep you all.

  10. I think of Chrissi often. All the love in the world to your family.

  11. It's too often that many moms - in all situations - feel the need to be supermom. It's a hard thing, to lean on your friends and family. I'm glad she found comfort in others - that's a wonderful transition that will serve her well. Sending much love and strength to your family, from ours in Ontario.

  12. So, so hard, and so very brave, both now and before. Not because she was trying to be brave, but because she gets up every day, you all do, and do what needs to be done, even with breaking hearts. And it takes courage also to break down, and be vulnerable, and to let others into the pain that you feel.

    Hugs and prayers to your whole family.

  13. Thank you so much for sharing this story. It is so honest and full of love.

  14. Thank you for sharing this. I wish it weren't so hard, I wish life were fair, I wish ... peace, and love, and support.

  15. Chrissi's story is a prime example of why we must keep talking, just as Catherine wrote so eloquently. Mothers need to know that no matter their circumstances, it's okay to talk about both our triumphs and our struggles.

  16. This is a beautiful and refreshing post. Thank you, and best wishes to you all.

  17. Thank you so much for posting this. Chrissi's pain deserves acknowledgment. As mothers, especially as special needs moms, we need to hold each other up. You are a wonderful woman, mother and grandmother to be there for your daughter. To share her story and give us a chance to share our support, even as minimal as it is. Somehow, I missed that Tanner has Autism as well. This is a pain I feel strongly and can understand. The pain of watching your child go.. I can't fathom.

  18. Tanner's autism is a relatively recent diagnosis (within the past year). the diagnosis merely confirmed what we suspected in terms of his paranoia and his detachment

  19. I wish I could give you all a hug....

  20. Thank you for sharing this. Sometimes it is easier for someone else to share our story when the story is so raw, so painful, so involved, and so present.

    Chrissi should never (ever, ever) have to answer for why she did or did not behave a certain way/do a certain thing/be a certain way. She loves her son and is doing the very best she can (and her best is damn good).

    My brother said to me once that no one person's pain is any greater or any less than another person's pain. We cannot possibly understand another's pain, we can only offer compassion and feel empathy.

    Blessings and love to your family.

  21. We are all so crazy in love with our children but feel at the same time that we have to be everything to them--especially the single mommies. They say "it takes a village," but my version is, "It takes a village to care for a mommy." Moms need their villages, but too often we turn away from them when we need them most because we think we have to be the strong ones. I'm so glad Chrissi has been able to find hers, and your story will remind me to seek mine when I'm in trouble.

  22. I presented a supermom face to the world for a long time too, and my hard isn't anywhere near this hard. This story just breaks my heart. Thank you for writing about this - I think it's so important to acknowledge when we need help and let others know that no one is perfect and, no, we can't do it alone.

  23. My heart breaks for your family as I read this story. Thank you for sharing it and for reminding us all again that we need each other.

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  25. Thank you for honesty. Grandmothers want so much to take away the most difficult and very common family pains and we just can't. I am not a sugar coated grandmother either. Life is real and so are our heartaches and triumphs.

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