April showers

April is always a difficult month for me. It is the anniversary of several event that changed my life forever. Some good, most bad. Regardless, every year, I cringe when April rolls around.

My cousin Chris died on 4/20/2011. He was 34. He was the most anti-social social person I ever met. Brilliant man with an IQ off the charts. A raconteur, musician, and bartender who moved to Seattle in 1999, and remained there until the day he died. His death was caused by acute lymphoblastic leukemia/lymphoma. He battled it for many years. Went into remission for a bit, then lost his life to it. I got word on a Friday before my spring break that he was dying and if I wanted to see him, I needed to get on a plane. I walked out of work and booked a flight. I battled torrential spring storms, flight delays and cancelations before landing in Seattle at 1:00 am, 30 hours after my original scheduled arrival. I walked into a hospital around 1:45 am to find dozens of friends and family sleeping in the halls of the hospital just to be near my beloved cousin. Upon his transition to hospice, we listened to music, watched baseball, and laughed about old times. There was a brief period when Chris was unresponsive (or so I thought) and I broke down with his best friend. To see this young man who had so much more to do in life, so much promise, lying in a bed while hundreds of people came to say goodbye was too much for me. It was the waiting and the fear that he was suffering that caused me to break. I said something like, “I know he is waiting to die on 4/20 just to be immortalized for dying on that date.” (We had joked about that earlier) Chris, who had been unresponsive for hours, smiled and threw his hand in the air. From that moment on, I knew he heard everything and his humor was still in tact. I talked to him, held his hand, and allowed his friends to make their final goodbyes. I acted like a bouncer and tossed anyone who caused him to become agitated. I didn’t know if we were doing the right thing, so I relied on his hand squeezes to tell me. I still remember crying when those hand squeezes stopped. He died the next day surrounded by his family and closest friends. His death was equal parts tragic and beautiful. Cancer is brutally tragic. The beauty came from all the love that surrounded him in his final moments. We would all be lucky to be loved as much as Chris Cavanaugh was. They say pain gets easier over time, but every April I still cry at least once a day. Losing him, giving up my hotel room to sleep in his hospice to be near him, witnessing the love people from all walks of life had for him…..it was life changing.

Chris Cavanaugh 7/17/1976-2011

The good in April is that on April 19, 2009, my beautiful Georgia Grace was born. She was the ultimate example of how to live well with chronic illness. She outlived her life expectancy by 7 years and sadly, I lost her before her 11th birthday. I admit I would celebrate her birthday to diminish the pain of Chris’s loss. I lost her on April 7, 2020, two weeks into the pandemic. Her death changed my ways for many reasons. First, my life revolved around her care. By the time she died, Georgia was taking 17 pills a day and getting two shots of insulin. I was working 5 jobs just to pay for her care. I lost her at the worst possible time…..while the world was in lockdown due to COVID-19. It wasn’t until after her death that I learned how her story made it around the world. I received condolences from 26 countries. I received gifts for months following her death. Cards, letters, and donations mentioned how her story helped others with chronically ill pets have hope. I always knew Georgia’s life meant something to me, but to know her life helped others….it gets me through. Georgia Grace also brought me my precious and healthy Finni Roux. Someone who loved her brought Finni into my life. I often say, she was the only good thing to happen to me in 2020.

Georgia Grace 4/19/2009-4/7/2020

With two of my favorite beings passing in April, I struggle each year with sadness. I think what I have learned most by losing loved ones, is knowing each day truly is a gift. So we need to make the most out of it. I don’t know if I will ever be able to find joy in April, but I will treasure the memories of the ones I loved and lost in April.

Living with chronic illness is tough, especially when that illness is spiraling a bit out of control as my RA is right now. Add in depression, well, let’s just say, I’m not the life of the party right now. I go to therapy, and take meds to help me cope. Grief is a tricky thing to navigate. Make sure you have a support system to get you through.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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