Five Months Later

Today is my sister Mary Claire’s birthday. She would have been 56 years old today.

I wish beyond all things that she was here, so that I could bake her a cake like I did last year and celebrate with her. I would give anything to see her sitting on my couch in the den and holding her newest great niece, Ellen.

But she is not here. Instead I have spent the last five months mourning my little sister and coming to grips with everything that has happened since she told me about the lump near her collarbone.

I miss her every single day. I think about her every single day.

I have second-guessed every single decision we made about her treatment. And come to the conclusion again and again that we did do everything we could.

And I have relived the week and half while we cared for her in hospice over and over.

Ultimately, I have had to make my peace with not only what we did, but with what how it all ended.

This experience has changed me in ways I never expected. I am no stranger to losing those I love to death. I watched my father die in front of me when I was just seven years old. I lost five relatives between the ages of six and fifteen. And because of the experience of watching my father die suddenly of a heart attack, I developed a deep-seated fear of death that has haunted me my entire life. Until now.

Watching Mary Claire fight the inevitable those last weeks changed my perspective forever. She fought so hard for every moment, even though at the end the moments she was fighting for were moments where she was incapable of truly living. When I think back over what happened, the only thing I would change is that I would no longer deny the truth of what was happening to her.

By this, I do not mean that I would not have fought for her as hard as I did over those two years after we got her into M.D. Anderson. I would. Absolutely. But once we had no further options, I wish beyond everything that I had had the courage that my sisters Julia and Jane had to face the truth and the courage they had to tell Mary Claire the truth about what was going to happen. And if I am ever in Mary Claire’s situation, I hope that I have Julia and Jane there to tell me the truth. I promise I will believe you two.

I love you forever Mary Claire.

And I love you forever Julia and Jane.

How Do You Say Goodbye?

The fifth installment in my series on taking care of Mary Claire in hospice earlier this year. 

Thursday, March 20, 2014
Mary Claire continues to weaken. We can all see it. She’s determined to do things on her own, but this morning, when I fixed her breakfast (chocolate milk and malt o’ meal) she couldn’t feed herself. She was just too shaky. She got frustrated and wouldn’t eat any more. Absolutely refused to let me help her. We are worried because she doesn’t realize that she can’t do things by herself anymore and very concerned that she will wheel herself too close to the stairs or try to stand up by herself and fall. So, we kept a close eye on her. Much to her annoyance, I’m sure. She also got upset when Julia helped her put her makeup on. It hurts MC to see her face in the mirror, which is so thin, and to see the swelling she has in her lower body. She can’t move by herself and she’s not herself. And all she wants is to be ‘normal’ again.

Today really started the goodbyes. Family is beginning to come in. Clark came in this morning early and when MC saw him, she called his name and just clung to him when he hugged her. She was so happy he was here. My daughter Emily came in for a quick overnight trip, and a few friends stopped by. Mom was also told today about what is happening. She is stunned and heartbroken. I finally saw her this evening. Julia called me to come join her at a restaurant, where she had taken Mom and our friends from home to get me out of the house. Amid the laughter and talk, much about old times, Mom suddenly became quiet and teary. It’s a shock, because we tried to protect Mom from the worst of this. And I have no idea if that was the right or wrong thing to do. 

After everyone else had gone, Julia and I stayed. And talked. And cried. And on the topic of the right or wrong things to do, we agreed that no matter with what has happened so far and with what happens in the next few days, there will be no second guessing, no guilt, no recriminations. And we told Clark that when he and his wife came and joined us. This loss is going to tear us apart in so many ways. We cannot tear each other apart during or afterwards. 

One bright spot in this day. The weather finally was just warm enough with no wind to allow MC to sit outside on the deck. We got her out there and just sat and visited while music played on an iPad. It wasn’t long, but I’m so happy that we had that moment with MC.

The low spot: When I was getting MC ready for bed, much earlier than her usual time at her request, she asked me, “Why can’t I remember anything?” And my heart broke again.