My little bear passed away. He had been battling the fight of his life and decided to slip into heaven a few minutes ago. I am reblogging what I wrote about him some time ago. Hopefully I will be seeing him soon again, when he will continue to show me the path forwards. You were and will always be my little hero.
During my career as a physician I have had on occasion the opportunity to serve as a grief counselor. More than once I have recommended the book “When Bad Things Happen to Good People” to those I was counseling. The book features, author and Rabbi, Harold Kushner trying to answer the questions that arise whenever a personal tragedy strikes. In the case of Rabbi Kushner the book was prompted by his introspection as to why his son had been fated to die in childhood from a progressively debilitating condition.
I am not sure if there is a greater feeling of loss than dealing with the death of your own child. I know this from experience. My grandson, Bertrand, is likely to die in the next few years. This is just enough time to get to know him, love him, and cherish the times we had together. My grandson has a genetic condition that makes him accumulate proteins in his cells. Ultimately the accumulated products impair other metabolic reactions thus leading to cell death. In the case of neurons, these cells are not replenished and the brain slowly withers away.
We knew from early on that Betrand needed medical attention. He cried a lot, did not seem to sleep, and could not be comforted when we hugged him. He also developed conspicuous hand mannerisms and EEG exams showed the presence of almost constant seizure activity. His parents took him to all the major academic institutions. At the NIMH the physicians prompted that by symptoms he was one of a few boys having Rett syndrome. However, additional genetic tests showed that he lacked the corresponding mutation for that particular disorder. In the end we finalized our tour of academic centers with a strong suspicion that Bertrand had a genetic condition that clinically manifested as part of the autism spectrum of disorders.
One physician visit after another, his parents received the terrible blow that Bertrand would probably die sometime in the near future and that there was very little that modern medicine could do for him. Periods of relative tranquility have often been interrupted by trips to the emergency room and then to the intensive care unit. A slight glimmer of hope came to us when a mutation, accounting for his symptoms, was discovered at Duke University.
I tell my daughters that a parent is only as happy as the most dejected of his progeny. This is the cross my family has had to bear, the weight on our shoulders, and the reason for many of my white hairs. When autism is characterized as a “pervasive” developmental disorder, it means that in order to get to know the same, a person would have to read about the whole of Psychiatry. This is the case because so many cognitive functions appear affected in autism. However, the meaning of a “pervasive” developmental disorder changes once it affects you personally. From this perspective pervasive means that autism is with you every hour, of every day, of every week.
For the most part I have made peace with the fact that my grandson will die in the near future. Yet, there are moments when my family’s adversities hits me like a lightning bolt and rips me apart. My daughter drafted a bucket list for Bertrand. It is painful for me to consider the same. Among other things, she would like to see Bertrand ride a horse, visit Disneyland, go trick-or-treating and take care of a pet. For many of these, Bertrand has already achieved them.
I have many pictures of my grandson but his childhood album is unlike that of my daughters and other grandchildren. Many of his photographs are in hospital beds or taken during trips to different academic institutions. Indeed, Bertrand has visited so many hospitals that he used to fold his arms over his chest and would not allow for personal contact. We could not decide whether this was part of his autistic traits or a protective reflex against having more blood draws.
I am now getting into an age where I have to face my own mortality. If anything, it makes me very uncomfortable to think that if I died many of the special memories about my grandson would die with me. I am not sure why I have this intrusive thought, but it pains me deeply. And yet, in the midst of this pain we have to be strong. Ultimately Bertrand not only has to accept his own feelings of self-consciousness but also those of the people around him. So we as parents have to be strong and resilient by working on our own coping skills.
There are many happy memories about Bertrand that I would like to share with the world and maybe this has been the reason for my blog today. I have learned a lot from my grandson. He is low-functioning autistic and non-verbal. Instead of verbalizing his thoughts, he creates guttural sounds. In many occasions his sound makes for a happy song, for in the face of adversity, Bertrand has been a happy child. This is the way I remember him.
I can’t express more admiration for my son-in-law and my daughter. Every day they surpass my expectations. Humans are primarily storytellers. The stories we tell ourselves are the lines that we live by. If you say to yourself that you are unlucky and unworthy you will live your life being depressed and lacking control of the same. So we have to be strong and stress the positives in our lives and those of our dear ones.
A person facing a tremendous life adversity could not be blamed for cowering and blaming God. However, my daughter and son-in-law have used all of their emotions to make Bertrand’s life be a positive. They created a foundation, established research, and collected a cohort of similarly affected individuals that is now being studied by the NIH. They decided that Bertrand’s life had a purpose.
In all of our struggles my family feels eternally thankful to have met so many wonderful and supportive people. Many of them have had their own cross to bear but they have done so gracefully and with humanity. In a passage from the Bible the disciples asked Jesus about a man who was born blind, and Jesus answered, “so that the works of God might be displayed in him.” Indeed Bertrand has been a miracle that has been loaned to us. And we all feel grateful for it.
To my little bear, grandpa loves you. Hugs and kisses.