Never heard of a "camp" for grieving people? Neither had I until Kathy Riley, Executive Director of We Can, approached me last year to help facilitate a parent group. I've been to many camps through Young Life, Heart of the Canyons Church youth camps, Ronald McDonald, etc., but never one specifically for bereaved families; not just adults, kids too. So, I attended with Jojo and Jacob last year and found the experience deeply fulfilling and helpful for my kids and me as we were able to share our experience of loss amidst empathetic ears. We returned again this year and once again found profound purpose, growth and wonder in our privileged time there.
I received a note from Joan Ross, a bereaved mother who agreed to let me share it here. She bought my book that weekend and finished reading it the other day. I was in need of her note because I am an insecure author. I am always wondering who is reading Blood Brothers and what they think. I am gaining confidence in this area but seriously, the frailty of the day to day mechanics of my mind requires constant maintenance.
Thank you Joan for fixing me today!
Please read: Lisa, I just finished reading your book. I couldn't put it down, although it was difficult for me to remember all the wars we fought for 17 years. I started journaling after Scotty died so all I really have is a calendar that I kept for his meds, Dr. appt. etc. I only had one child with cancer. I can't imagine what it would be like to have 2. I have never done a time-line, but I think that over the years we have probably been in the same place at the same time. We were at Memorial in Long Beach, City of Hope,
CHLA and orthopedic in LA. Scotty was first diagnosed at 23 months (Jan
9,1990). He was on the 3 year plan when he relapsed 10 months later, just before Christmas of 1990. They got him back into remission and then he went to the City of Hope for 3 months for a bone marrow transplant. I guess we were one of the lucky ones because our only other son, Ian, who was 5 at the time was a match. In the middle of all this I found out I was pregnant with Robert. At Robert's 1st birthday, July 28th 1992, we had a small backyard birthday for him and we were filming the party. When I watch the movie, you can hear the phone ring in the back ground. It is Scotty's Dr. calling to say he had relapsed again. Again, for the 3rd time now, he went through cranial spinal radiation and major chemo. They actually made up their own plan because they knew this was a last chance. Selfishly we said bring out the big guns and watched him go through hell for another 3 years. Finally treatment ended, but unfortunately he had to get all his hormones artificially, had definite brain deficits, heart problems and lung problems.
It was always something. But we sort of had a reprieve and totally identified with you when you talked about getting the monthly blood counts.
I worried until he had his MRI and then when it was over I couldn't wait for the next one. In Nov 2004 he started acting strangely, losing things, dropping things, falling down and complaining of headaches. Now, I want you to know that what you felt when the Dr. said your child was sick and you wondered why you didn't see it, I have to tell you, I was the worst of all.
His left side of his face was drooping and he was lopsided. Bill is a Dr, and I am a nurse and we did not see it. I told him to stop taking so much advil for his headaches, to lie down and relax and listen to music. I later found out he was sneaking advil because he didn't want me to know. The last night before we took him in for a CT scan, he fell off his stool at the dinner table, got us laughing and I finally saw that only one side of his face was laughing. The bottom of my world dropped out. Over the period of
2 1/2 years we battled brain cancer. We got rid of it, it came back, everytime it came back it was in a worse form. He had 2 stem cell transplants which almost killed him. Dr. Finlay told him in May of 2007 that if there were things he wanted to do, he should do them. He picked 4
things: ACM's and a meet and greet with Rascal Flatts, the prom, his Baccalaureate and to walk with his class to graduate. 2 days before graduation he was unable to walk and he said "well, I guess I'll be the only one rolling to get my diploma. The principal gave him the Principal's Inspiration Award and the whole class stood up when he got his diploma.
Within 2 weeks he was on hospice, in a bed in our living room. I prayed for a miracle, I knew God performed miracles, and then I just prayed for comfort. He passed away Aug 15th, 2007.
I used to be angry with God for taking my son. Like yours, he was a good, honest, caring person. I knew God could perform miracles, why was He not performing one now. But over the years, I have come to understand that since he was first diagnosed at 23 months, we received miracle after miracle, God gave him to us for 19 years and changed our lives forever.
When you describe the gardens at COH, I walked those gardens also, I stayed in the little cottage, pregnant. I walked the hall of CHLA and had many of the same experiences. I guess there is some type of camaraderie that is formed when you read someone else's experience and it is so like yours although as I said you had 2 sons. I too threw myself into fundraising and working for the Pediatric Brain Tumor Foundation. We formed Scotty's Riders Club and my family and friends have raised about $240,000 over the last 4 years. Becoming a GriefShare facilitator has been a blessing, although again, it takes its toll also.
I have rambled. I guess I wanted to put it on paper and share it with someone who truly comes the closest to understanding it as anyone I know.
It's Memorial Day and a day to remember our Veterans. I feel that we have our own veterans to honor, our own grief battle to fight. We have God on our side. Little David with a rock and God on his side slayed the Giant Goliath who had the best armor and the best weapons of the time. We will not get purple hearts or 21 gun salutes but we can surround ourselves with people who have fought the greatest battles.
You are a wonderful writer, incredibly eloquent, touching mom's everywhere.
I look forward to getting together some time, maybe next year at Camp and I know that Umbrella Ministries is considering asking you to speak at their conference next May. Once again, God has put someone beautiful on my path.