Monday, March 10, 2014

Missing Grammy

My girls have lost their Grammy. My mother-in-law was an incredible woman, as all who knew her would attest, and over the last few years, she was unfairly robbed of the version of herself that we loved. Originally, doctors thought her slow-building dementia was the result of Parkinson's or Alzheimer's, but repeated tests ruled those out a year or two ago. Instead, she had a condition called Lewy Body disorder. The person who suffers from it actually retains more of their mental faculties than is apparent. Their memory may suffer, but not to the same extent as with Alzheimer's. Their body just deteriorates, to the point that it requires an incredible amount of effort to perform simple motor tasks or express the most mundane thought. Once we learned more about the symptoms, my wife and I found them chillingly familiar. We already had someone in our lives, someone we love dearly, who is trapped in a body they cannot control. As Elise's condition worsened, I think our experiences with our daughter Zoe gave us better insight into what she was going through. The connection they already shared was bolstered by the common enemy they had to fight: a neurological impediment that waylaid the connection between their minds and their bodies. This bond of theirs made us more sympathetic to Elise's suffering. I hope, at least, that she would say the same, now that she's gone.

This was the first person close to our girls who passed away. Knowing that Elise's health was in decline, I was hoping that the girls' goldfish would die first, so we had an easy way to introduce this intimidating concept. It wasn't an unreasonable expectation -- we'd had the fish since August, and the family shared an amiable negligence for it. He didn't eat every day, and his water went way too long before it got changed. Still he stubbornly hung on, and he refused to die early enough to be an object lesson, which is always the way it seems to work out on TV. Instead, we had to explain death to the girls in the context of someone whose value to them was beyond measure.

Hannah got to see her Grammy in the last few days before she passed, which may have helped her to process things. Due to different factors in our schedules, we never were able to get Zoe over to see Grammy in time. I don't know if it would have helped or not. She may have had a hard time recognizing Grammy if she had. Elise had become a withered version of the vital person we all remembered. She spent the last week of her life in bed. Like all of us, Zoe would have too many memories of Grammy, even in the last few years, just doing something -- being active, playing with her and the other grandkids, cooking, singing. The Grammy at the end was not that Grammy, and it may have confused Zoe even more to see her like that. Instead, I had to explain to the girls, much more abruptly in Zoe's case, that Grammy was too sick, and her body was too tired. She was going to go to sleep soon, and she wouldn't wake up, which is what happens when someone dies. I was proven right within days.

It is hard enough to explain death to any child that age. There are just too many elements of it -- the finality, the overwhelming absence, for which they have no frame of reference. Hannah asked fewer questions than we expected; the questions have filtered in over the last month, but we aren't sure how well her mind has processed all this. We are even less sure with Zoe. We don't know what questions she has, because none of our means of communicating with her are sophisticated enough. She has an eyegaze computer that she uses to tell us simple phrases, ask questions, or answer them. The phrases and questions that would provide us an entryway into the topic are even too overwhelming to try to broach with her. It's even more difficult to try to guess what questions she has and put thoughts in her mind, worries or confusion that weren't there. Still, Zoe has always been Daddy's Little Stoic, so she might be coping just fine.

While Zoe and her Grammy loved each other immensely, I will always suspect their relationship was not as deep as her older sister's relationship with Grammy. The girls are only eighteen months apart, but much of the time Hannah spent with Grammy was time that Zoe couldn't share, by definition. In the time around Zoe's Rett diagnosis, and the year or so that followed, Hannah would stay with Grammy while my wife and I accompanied Zoe on hospital visits: EEGs and sleep studies, overnight stays to battle pneumonia, or biannual trips to Rush to participate in a research study. While we were off watching Zoe get measured, or have her temperature taken, or get hooked to an IV, Hannah was at Grammy's house, playing the piano with her, or baking cupcakes, or setting up toy trains. It's safe to say one of the girls may have been having a better time in those instances than the other.

But that's not to say that Zoe and her Grammy did not have plenty of special time together. It was just quieter and different. Grammy was always content to sit and cuddle with Zoe and watch the same Wiggles video over and over, or sit in a rocking chair and sing with her, as she'd done with all the grandkids. As Zoe got bigger, but her body and its abilities didn't catch up to her, Grammy may have had a hard time thinking of different things to do with Zoe, but those old favorites always worked. And cruelly, as Zoe started school, and we got welcome assurances about her normal mental abilities, her sense of humor, and her increased interest in age-appropriate activities (all things that Grammy would have appreciated and tried to cultivate), Grammy's own abilities began to deteriorate. They dovetailed. I will never forget one of my mother-in-law's last incisive thoughts that she could fully express. She, like us, suspected something was wrong with Zoe prior to her diagnosis. She passed along information to us about Angelman's well before we had any testing done on Zoe, well before we had resigned ourselves to the fact that she needed to be tested for anything. I read the information and dismissed it immediately. I was angry with my mother-in-law for putting this information in front of us, not-so-distant relative to the facts that it was. It was one of the few times I can remember being angry with her for anything. But she was right, she got across her point, and it helped us ultimately be open to accepting Zoe's condition. It was one of Elise's final, appropriate gifts to us and a reminder that she knew children better than anyone.

Prior to her funeral, the younger grandkids wrote letters to put into Grammy's coffin, and Hannah wrote letters on behalf of Zoe and her baby brother. Hannah didn't know what Zoe was thinking any more than we did, so many of the memories she wrote about were her own (and many of those things Zoe didn't participate in the same way). I made a point of asking Zoe some specific things that were important to her about Grammy, and she looked at me intently and smiled. I had Hannah add them to Zoe's letter, acting as her sister's hands as she so often does. It was one of the many times that I remind myself to trust my instincts with Zoe and know that she can, despite the many obstacles, clearly communicate to us that we are on the right track to understanding her.

At the actual funeral, Zoe fell asleep in church, possibly because she was legitimately tired and possibly as a defense mechanism to the physical and emotional strain. She missed her mother's beautiful eulogy about Grammy, but even in her sleep, she might have heard it, observing the words that any mother would love to hear from her daughter. Zoe is a daughter who loves her mother; she knows the message my wife conveyed whether she was awake to hear it or not.