Tonight's picture was taken in August of 2009. By that point, we knew Mattie's cancer was terminal. Mattie was sitting between Jocelyn and Jenny (Mattie's art therapist). Mattie met Jocelyn early on in his treatment process. Jocelyn also had osteosarcoma. Though Jocelyn was 20 years Mattie's senior, these two got along beautifully, like peaches and cream. Notice Jocelyn's orange wrist band. That was a "Stomp it out for a Mattie Miracle" wrist band that Jocelyn was so fond of. So much so that she gave these wrist bands out as wedding favors years ago when she got married! To me that was a beautiful sign of friendship and loyalty in memory of her buddy Mattie. Tonight's photo illustrates two beautiful people struck down by osteosarcoma, and thereby two sets of families whose lives are permanently altered.
Quote of the day: Ever has it been that love knows not its own depth until the hour of separation. ~ Khalil Gibran
Peter and I attended Jocelyn's celebration of life event today, which was separate from her funeral that happened soon after her death. Jocelyn's funeral was a closed event and only attended by family. Today's event was well attended by perhaps 150 or more people. I have to admit that prior to Mattie dying in 2008, I had no idea what a celebrate of life event was! I never attended one in my life, much less heard of one. It wasn't something I grew up knowing about, hearing about, or even attending. With that said, I certainly knew all about funerals and wakes.
After Mattie's funeral and celebration of life event, which was overwhelming to me, I no longer feel compelled to attend anymore end of life events, and haven't. Well that was until my 85 year old friend Mary died in March of this year, and those closest to me knew I was struggling with attending that funeral. To me these events are no longer about the deceased person, they are about who remains and unless I feel I am needed or my presence is requested by a family member to be in attendance, I most likely will not be going.
When Jocelyn died, flowers were not requested. Instead, the family requested that people make donations to Mattie Miracle. That is how much the Foundation meant to Jocelyn, and in essence that is how connected Jocelyn felt to Mattie. If Jocelyn could haven seen the outpouring of love from friends and family to the Foundation, I know she would have been very touched and moved, because even in her death she is helping countless numbers of children with cancer.
At the event today, there were 8 formal speakers who shared stories and their perspectives about Jocelyn's life. All sorts of people from roommates to law professors. There were many common threads about Jocelyn... she was bright, determined, a hard worker, passionate, an advocate, loving, and always a devoted friend. After the 8 formal speakers, those of us in the audience were allowed to speak. I raised my hand and went to the front of the room. I felt that we heard about Jocelyn's personal life, college years, law school experiences, and even her work life, but it was also important to hear about her life as a cancer advocate and also that as a cancer mentor and devoted friend.
I explained to the audience that Jocelyn sized us up in clinic and deduced that Mattie had her same disease. She took it upon herself to get to know us. Mattie instantly gravitated to her. Which is interesting since she was 20 years older than he was. But as Jocelyn's mom told me today, Jocelyn always said, "Mattie was a lot older than his years!" ABSOLUTELY!!! Which is probably why their relationship worked so well. In many ways, Jocelyn gave Mattie and I both hope, because she made osteosarcoma seem like a doable disease! I relayed the story of Mattie's fear about his leg limb salvaging surgery and how he feared not being able to walk again, looking different, and of course just being plain scared. With that, Jocelyn sat down next to Mattie and the next thing we knew she lifted her pant leg and popped off her prosthetic leg. Keep in mind up until that point, Mattie did not know Jocelyn had a prosthetic leg. Jocelyn wanted to show Mattie what a prosthetic looked like and that with it she could walk, run even, and lived a life just like everyone else. To a six year old who was intrigued by gadgets, Mattie found the whole prosthetic fascinating. The way Jocelyn presented it was in a very humorous and witty manner and she most definitely captured Mattie's attention that day. None of us could have done this! She had lived the experience and could talk with Mattie using first hand knowledge. Jocelyn shared that gift with Mattie on many occasions. They shared thoughts, feelings, and fears together. They also had fun, antics, and spoofy times together in clinic!
But at the core, Jocelyn had mothering tendencies toward Mattie. Jocelyn may have been unable to biologically have any of her own children, but her nurturing and devotion came shining through. She showed me on numerous occasions that you do not have to be biologically related to people to care about them. After Mattie's death, Jocelyn remained connected to us and attended our Foundation Walks, supported our work and our mission, and even in her death is encouraging her friends and family to do the same. To me Jocelyn will always be a loyal and devoted friend who tried to make Mattie's battle more bearable. As I told her family and friends today, Jocelyn's memory lives on with us and within the Foundation.
Peter and I had the opportunity to talk with Jocelyn's parents, her in-laws (who we have met before at our Foundation Walks), her sisters, her wonderful and devoted husband, Brian, and many of her friends. In the midst of the crowd was also Jocelyn's oncologist. Jocelyn and Mattie shared the same oncologist. Though because of issues we had with this doctor, we switched doctors in April of 2009. How was it to see this doctor again? Peter and I have different reactions to this! Typically Peter is the more rational of the two of us, but when it comes to this individual, it takes Peter great restraint to be in the same room as this person. For good reason, we have a history with him, which I do not care to rehash at this point. But I can say that seeing certain people can retrigger certain memories and feelings, and they aren't necessarily positive ones.
As we were saying goodbye to the family today, we could tell that the immediate family is simply devastated. The reality is now hitting them!!! Now what??? When will this raw feeling or this intense pain end? How will I continue living without this person in my life? One of Jocelyn's sisters said she wanted to email me because she wanted to get my perspective on a few things. Which I welcomed her to do, of course I am always cautious internally about sharing my feelings about helping someone through grief. Especially since I know much more now than I did during those raw stages. Would I want to know what I know now back then? Maybe not to be quite honest!!!
Several people came up to chat with me today after I spoke and they told me how moving my words were. I am not sure they were that moving, perhaps they were, but my words of advice to each of these "close" friends were.... "do not forget the family. I know you are here today to support them, but they will need your support long term. The grief they will be dealing with is here for a lifetime." I could tell several people were absorbing what I was saying and I hope this comment stays with them into the future. Because at the end of the day, there is NO MAGIC fix to grief. No magic pill, no magic group, solution, exercise, and so forth. I can certainly attest to the fact that grief doesn't go away at the ONE YEAR ANNIVERSARY! Which is when social support drops off significantly!!! But the key to long term grief survival is feeling engaged, part of the world, connected, and feeling understood by others in our life. Hopefully my thoughts are clear to you tonight, because I am truly wiped out from today and the emotional experience of trying to keep it together throughout the day.
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