com·mu·ni·ty
kəˈmyo͞onitē/
noun
- 2.a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals."the sense of community that organized religion can provide"
This is the follow up to my Facebook post last night. As I learned of the demise of another, very young NF warrior and read the pleas for prayer from the mother of a young woman, who will likely not last the week, I felt short of breath. Because I couldn't think of anything uplifting to share with my beloved NF support system, the community I have depended on for so many different levels of support, I simply stated:
"Feeling sick and sad. Too many young people being taken before their time. A cure needs to be found. I want to feel fueled to the cause, but I can only feel short of breath at the moment."
There were a variety of responses to my post, but I will address those later. I wrote what I did, shared how I was feeling, because I needed to be honest. I felt deflated and panicked and angry and sad. I did not feel inspired. I did not want to run out and find a way to raise more money or more awareness. All I wanted to do was crawl under my covers and cry.
I found myself on the internet searching MPNST and recalling the two new plexiforms on my son's body (although I know he was born with them, they did not appear until more recently than the first one); driving myself frantic with worry that it would happen to him too. I emailed a friend, a very courageous woman I have come to know through my community of heroes, to ask her for the details of her teen-aged son's MPNST survival. Early detection. Even the mother of the withering young girl was posting desperate advice:
"Don't be fooled like us into thinking your safe just get checked often at least yearly if not more especially if you have plexiforms.
She started showing signs at school in Feb. She had just had a surgery so we thought they were fallout from that. We went to drs in July. Sent to oncologist in aug who told us it wasn't cancer. 3 weeks later in hospital emergency because she couldn't feel her groin area. Mri saw softball tumor eating through her sacrum into tailbone. We found out after 3 weeks of tests and drs that it was inoperable so we tried chemo pill votrient and radiation. Nothing helped only speed it. She hasn't gotten out of bed now for almost 2 months even with a pain pump implanted and morphine and neurontin etc. She hasn't gotten a break since and everything that can go wrong has. From diagnosis is been 2 1/2 months."
I would be foolish not to be panicked, right? If it could happen to their children, why not mine? Why should I think I am more fortunate than they are? The truth is that these feelings have been building since Jesse entered adolescence and his hormones started their rage. I've been warned all of his life that this is the period of tumor growth and changes. The specialists all have the same approach. If there are no symptoms, such as cognitive changes, rapid growth, pain, falling down, bumping into things…then we watch and we wait. I get that. I don't want to unnecessarily subject my son to additional testing and scans, but once there are symptoms, when the tumors are differentiated, isn't that sometimes too late???
I am not, by nature, a worrier. I'm usually pretty evenly keeled. My advice to others has always been, " Do not lose sleep over things that haven't yet happened, and may never happen." That's good advice. So why was I losing it? My breath was caught in my chest and my heart was heavy.
Being very involved with the NF community gives me the opportunity to be supportive to others and receive their support in return. Yet, being so attuned also exposes me to the horrors of this monstrous disorder. When Jesse was very young, in the days of the NNFF bulletin board as a way of sharing within the community, I waxed and waned in my participation. If he was stable and I felt secure, I stayed away. If something new came up and I felt anxious, I engaged. This could lead to additional anxiety or it could offer comfort, depending on the severity of the symptoms. In those days, I was not a very active volunteer and I didn't know many others on a personal level who were affected by NF. The fundraising and awareness I initiated was with family and friends. I could be involved as much or as little as I wanted to be.
Over the past 8 years, with the onset of more of the physical manifestations, I have gradually taken on a greater roll in order to feel more empowered over this beast. In general, being active has served me well. It has given me more of a sense of control over the thing of which I actually have no control at all. Last night, that fact hit me square in the face.
I am still reeling from the untimely death of dear, sweet Gavi. At 22 years old, Gavi and his parents attended the first NF Walk that I organized in Rochester, NY. Although I had met his parents a few times, this was my first time meeting Gavi. He was a bit older, but he was so much like Jesse. Mutual friends of ours who had known his family since he was very young, often remarked about how similar they were in appearance and in demeanor. He had a beaming smile that drew you in and encouraged you to approach him, yet when you did, he was somewhat apprehensive if he didn't know you well. Once you engaged him in conversation, he was charming and delightful. Gavi was the kind of person that everyone liked. There was nothing abrasive or offensive about him. I remember him buying raffle tickets by the armful. He said that many of his friends had given him money to buy the tickets for them even though they couldn't attend the walk. He kept winning and winning and his smile beamed bigger and brighter.
Also attending the walk, was the new NF specialist in town. Dr. Mulbury was making her debut in the greater NF community that day and introducing the presence of a budding clinic that was so badly needed in the area. Gavi's family chatted with Dr. Mulbury and she encouraged them to come in since Gavi had been symptom free for many years and had not been examined by an NF doctor in that time. During that exam, it was decided that they would conduct a baseline MRI just to keep on file…
It wasn't until after his resection surgery that I learned that the MRI revealed a brainstem tumor and that the tumor was growing over the 9 months that they monitored it. They attended a bowling event that I held in January (just prior to the decision to excise) and they didn't mention it. They were pretty private people. We were collecting items for a teen in our chapter who was going through treatment for his NF related Cancer and they donated. By the second walk, they emailed me to explain why they were unable to participate in the walk's organization. He had had surgery at this point and was rehabbing in a nursing home. They could never get ahead of that tumor. He passed away just 3 weeks before the third annual walk. He was 24 years old and their only child.
Last night, when the young man passed and the mother of the young lady was pleading for prayers, Gavi's parents' faces were emblazoned on my heart. I couldn't even attend his funeral because I had just moved to Virginia. They showed up unexpectedly at the NF Walk on September 29th of this year (3rd Annual) and a team was raised in his memory.
It was more than I could bear, so I chose to let the burden that I felt so heavily last night, show in my Facebook post. I purposely abandoned hope for an evening so that I could feel the full force of my pain. I rarely ever do that, especially not in public.
Going back to the comments that were left on that post; they ran the gamut. As expected, those within the community commiserated, some of my friends outside of the community offered their prayers and well wishes, others encouraged me to stay the course and continue on in my efforts to do good for the cause. The one theme that stood out, however, above all else, was the validation of the intense need that we all have for each other's company in times of grief, in times of fear and in those times that we get to rejoice about one simple word: stable.
Six months more of hope
Thankful for prayers answered
Able to breath once more
Bearing good news
Lifted spirits
Enjoying the moment
Being very involved with the NF community gives me the opportunity to be supportive to others and receive their support in return. Yet, being so attuned also exposes me to the horrors of this monstrous disorder. When Jesse was very young, in the days of the NNFF bulletin board as a way of sharing within the community, I waxed and waned in my participation. If he was stable and I felt secure, I stayed away. If something new came up and I felt anxious, I engaged. This could lead to additional anxiety or it could offer comfort, depending on the severity of the symptoms. In those days, I was not a very active volunteer and I didn't know many others on a personal level who were affected by NF. The fundraising and awareness I initiated was with family and friends. I could be involved as much or as little as I wanted to be.
Over the past 8 years, with the onset of more of the physical manifestations, I have gradually taken on a greater roll in order to feel more empowered over this beast. In general, being active has served me well. It has given me more of a sense of control over the thing of which I actually have no control at all. Last night, that fact hit me square in the face.
I am still reeling from the untimely death of dear, sweet Gavi. At 22 years old, Gavi and his parents attended the first NF Walk that I organized in Rochester, NY. Although I had met his parents a few times, this was my first time meeting Gavi. He was a bit older, but he was so much like Jesse. Mutual friends of ours who had known his family since he was very young, often remarked about how similar they were in appearance and in demeanor. He had a beaming smile that drew you in and encouraged you to approach him, yet when you did, he was somewhat apprehensive if he didn't know you well. Once you engaged him in conversation, he was charming and delightful. Gavi was the kind of person that everyone liked. There was nothing abrasive or offensive about him. I remember him buying raffle tickets by the armful. He said that many of his friends had given him money to buy the tickets for them even though they couldn't attend the walk. He kept winning and winning and his smile beamed bigger and brighter.
 |
| Jeff, Lyn and Gavi at the 1st Annual NF Walk Rochester, NY |
Also attending the walk, was the new NF specialist in town. Dr. Mulbury was making her debut in the greater NF community that day and introducing the presence of a budding clinic that was so badly needed in the area. Gavi's family chatted with Dr. Mulbury and she encouraged them to come in since Gavi had been symptom free for many years and had not been examined by an NF doctor in that time. During that exam, it was decided that they would conduct a baseline MRI just to keep on file…
It wasn't until after his resection surgery that I learned that the MRI revealed a brainstem tumor and that the tumor was growing over the 9 months that they monitored it. They attended a bowling event that I held in January (just prior to the decision to excise) and they didn't mention it. They were pretty private people. We were collecting items for a teen in our chapter who was going through treatment for his NF related Cancer and they donated. By the second walk, they emailed me to explain why they were unable to participate in the walk's organization. He had had surgery at this point and was rehabbing in a nursing home. They could never get ahead of that tumor. He passed away just 3 weeks before the third annual walk. He was 24 years old and their only child.
Last night, when the young man passed and the mother of the young lady was pleading for prayers, Gavi's parents' faces were emblazoned on my heart. I couldn't even attend his funeral because I had just moved to Virginia. They showed up unexpectedly at the NF Walk on September 29th of this year (3rd Annual) and a team was raised in his memory.
It was more than I could bear, so I chose to let the burden that I felt so heavily last night, show in my Facebook post. I purposely abandoned hope for an evening so that I could feel the full force of my pain. I rarely ever do that, especially not in public.
 |
| Team Gavi's Angels, that pulled together at the last minute, in memory of Gavi. His parents are in the center. |
Going back to the comments that were left on that post; they ran the gamut. As expected, those within the community commiserated, some of my friends outside of the community offered their prayers and well wishes, others encouraged me to stay the course and continue on in my efforts to do good for the cause. The one theme that stood out, however, above all else, was the validation of the intense need that we all have for each other's company in times of grief, in times of fear and in those times that we get to rejoice about one simple word: stable.
Six months more of hope
Thankful for prayers answered
Able to breath once more
Bearing good news
Lifted spirits
Enjoying the moment
Great Blog Connie. It's ok to let yourself feel the feelings because it does suck. We don't always have to be strong just because we are parents and adults. It hurts me just as much as it will and does hurt a child. So very lucky to have you as well as so many others to absorb our moments of sadness. ((HUGS))
ReplyDeleteOf course we should feel our. Feelings, but as representatives, we don't always feel it is appropriate to do so publicly. I took a chance and found that it was okay to do so.
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