Make It Stop

So now what?
Jim and I ask each other all the time - what are we supposed to do? We just don't care. We attend meetings at the Den for Grieving Kids, part of the Center for Hope. These meetings are family-based, so we all attend. There is a group meeting for everyone and we all split up for smaller group sessions - the kids go off to aged-based smaller groups and the parents attend death-related groups (the parents in our group of 7 or so have all lost a child, other groups I imagine are for adults who have lost a spouse, etc.). We do find some comfort in being with other people who are experiencing a similar loss. We hope that Addie is finding some comfort in being around other children her age who have had someone in their family die. It seems as though most of the other kids have had one of their parents pass and I don't know which is worse, a child without their mommy or daddy or a mommy or daddy without their child. All rotten stuff. We've had some other horrible tragedies happen around us, starting with our dear friends the Loura family. Mike Loura was in a bike accident and is paralyzed. We pray for him and his family everyday. Move on to Jennifer Tomasello, wonderful mother of 3 young children and wife (her oldest son Andrew was a classmate of JR's) who lost her cancer battle. I know she has joined my sweet boy and I am happy to think of his having a nice mommy up there with him, joining my great friend Martha's mom for some extra lovin'. Keep him safe, mommies. Another hugely significant event happened shortly after when I got an email that read Mikey Czech died. I never knew Mikey but had heard about him through a contact that my wonderful Uncle Ron had put me on to. At the time, almost exactly one year ago, Mikey's father had put out an APB looking for information on doctors for his 11 year old son who had just been diagnosed with a rare form of inoperable pontine glioma (brain stem cancer). I read the notice and quickly forwarded him JR's doctors at Sloan Kettering (whom he contacted). They ended up at NYU (with the other doctor that JR's surgeon had recommended) and joined a clinical trial that seemed very promising. I heard through the grapevine that he was doing well (a neighbor is great friends with a New Canaan family who are friendly with the Czechs). I was so surprised and deeply saddened when I heard that he died fairly suddenly in September but all due to freakin' cancer. We've had a lot of contact with this very special family and know for a FACT that JR has been there for Mikey and we often picture them running around together. I hope they feel our daily (hourly, OK, each minute) prayers and enjoy each other's company. It's all devastating. I can tell you one thing, however. Cancer never met such a grueling competitor as Mikey's father, If anyone on this planet will help children overcome this disease, it will be Mikey's unwavering parents. God bless that family. They have been a true source of inspiration to me.
Fast forward to Thanksgiving. Now any of you who are familiar with my previous blog entries or who were around us during all of the hospital stays and treatments know that the person who got right in there and got his hands the dirtiest was my Uncle Ron. A minister, hospice chaplain and cancer survivor. He knew Sloan Kettering like the back of his hand and knew just what we needed to do to help. He was with me for JR's first post-op meeting when Dr. Souweidane read me JR's pathology report (which meant nothing to me at the time but in retrospect was a death sentence), taking notes and asking questions that I didn't know to ask. He showed up out of the blue when JR had subsequent surgeries and hospital stays. He kept my family informed and knew when to intervene. He just did everything he could to stay in the loop and to make sure JR was being looked-after properly. All the while, his cancer had quietly returned and was robbing him of his future. He even went out on Addie's birthday (Oct. 1) and got her the best present (a fashion design studio, as it is called) all on his own and was so proud to give it to her (Thank you Uncle Ron). As fate would have it, Ron's cancer took over and he left us Thanksgiving evening. Like JR, he was surrounded by his family and passed peacefully. Could all this be happening? Please pray for Ron, my Aunt Gail and my cousins Chris and Mark and Chris's wife Andrea and their two (and a half) children, Kalle, Luke and baby due on Luke's 3rd birthday in June. What an amazing family they are and they have done so much for us and we feel so inadequate in our help for them. We miss you Uncle Ron.
One last tragedy (with a silver lining) that I must mention. Our neighbors and dear friends the Fitzsimmons had their very own brush with death when their son Jack was hit by a car while bike riding just before Christmas. Thankfully, his injuries will heal and he will recover but his leg was badly broken and his head did a job on the car's windshield but luckily the windshield was no match for Jack and we can rejoice in the fact that Jack will be okay. I remember not being able to breathe when I heard about Jack's accident but our prayers were (finally) answered and he was spared. I can't even begin to imagine the what if's.....
I'm sorry if this is all so depressing but I think once you're in the world of horrible things happening, it can snowball. I think Jack provided the block under the tire that kept the truck of doom from just crashing out of control. All we can do now is try to focus on how we can make some positive changes in this world. OK, so today is Barack Obama's inauguration and we'll hear a lot about all the change that is going to happen. Perhaps we'll see a few things change, but do you think we can rely on the US Government for change in ourselves? The only change I can forecast will come from each of us if we take a look at what has happened and figure out the best place to put our efforts. That is my short-term goal. To figure out where to use all this passion I have found in my quest to honor my son and to make sure that his life will stand for something grand. I have this jumbled mish-mash of ideas and I haven't fully streamlined how to make some of these ideas come to fruition. I sit with my Kimberly and she listens to my grand schemes. Thank God for her and her organized thinking (as I always compliment her) because somehow between the two of us, we will formulate a significant and lifelong goal. Once the goal is set, I will promise to deliver. Luckily, I won't have to limit my delivery to 4 years. Please honor JR's memory with me.

Coming Up on Six Months

I haven't had any desire to write since JR's passing and for some reason today I just sat down, looked up the blog to see if it was even still there and decided to give everyone an update. So much has happened in the nearly 6 months since JR was here with us. I've cried millions of tears that come whenever they decide to come. For example, earlier today I was returning Addie's Hannah Montana combination clock/radio and iPod docking station Christmas present to Toys R Us (this is the second such product I've purchased that completely just doesn't work) and heard a dorky 'ole Pat Bennitar song "We Belong Together" and sat sobbing for half an hour in the parking lot. Didn't expect that one. Going into the store is also gut-wrenching. JR was always fascinated by any store that sold, well, anything. Talk about a kid in a candy shop, or in his case, just a kid in a shop. Add toys and voila, a full-scale battlefield where he always somehow won. Especially given his circumstance, there were never too many "no" answers coming from my mouth. I literally have to turn my head away from the Lego section or the sports equipment section or when I see Pokemon or Yu-Gi-Oh or even Thomas the Train. Then there's the Nintendo and Wii stuff and the bike section. It pretty much covers the whole store except the very pink sections that I head for and wander around in until I can get enough courage to sprint with my head down to the cash registers. I had on dark glasses today to hide my puffy red eyes so imagine what type of lunatic people in the store must have thought I was! I had also slept in the clothes I was wearing. URRRRrrrrrr. In the end, I was proud that I had returned one item on time and while I was there, managed to buy a birthday present for a party that's not for another 9 days. If I can check off just one thing on my list then I feel like I've had a productive day. The number of things on that list is so overwhelming (and growing) that completing one item a day doesn't come close to outpacing the rate of growth of the list, so do the math. Also, there are some things (like returning a purchase to a store) that are simply, "get in the car and drive" that I can handle quickly but if there is a "search for the receipt" or a "find a replacement" component then the task might go right off the radar and slip way down on the list. There is also no rationale behind the things that might suddenly jump to the top. I spent hours the other day working on updating my passport and getting Addie's together. Huh? How did that get to the top of the list? They're not done, by the way, but a new file has been created and has added several new things to my To Do list. Mind you, I had a minor case of the same traits before any of this happened but to see this behavior so amplified worries me a bit. What's in store? Do I care?
Let's see....we had JR's wake on July 21st at Lawrence Funeral Home in Darien. The Lawrence Family was so wonderful, kind and generous to us that we were speechless. If any of you aren't aware, JR (and Addie's) school nurse is a Lawrence sister, so the existing tie to the Lawrence Family already ran very deep. I don't know how many hundreds of people came and don't remember a whole lot about it, except that while I stood next to JR's casket for 6 hours, I hugged and cried with so many people that the button on my jacket pressed into the middle of my chest so many times that I had a big bruise there. Talk about auto-pilot. We managed to get boxes upon boxes of JR's stuff (including his impressive Webkinz collection) scattered all around the funeral home. We were in such a fog we look back and wondered how everything could have taken place. We were just gone. Completely gone.
The funeral the next day at St. Luke's? Huh? I guess that happened, too. I will figure out how to attach each of the eulogies but if I try to do it right now, I'll never get finished here. I only remember looking down at the floor while walking in, reading something and scooting out into the car. I also remember Laura playing the flute since she was one of the few people that I faced. I know what Jim, Bill, Ron, Andrea and Kimberly read but never heard them. I found out later that the church was overflowing and that people had come from all over the place. Sorry to everyone that I didn't see that day (Tracey came all the way from California and I didn't even know it!!). We went to the cemetery (Long Ridge Union Cemetery in Stamford)?? Little blurry on that one, then went home to change and met up with many of you over at Weed Beach for a little casual JR-inspired beach time. I do remember a little of that. The kids all signed a blue balloon and let it go while yelling "We love you JR". Neighbor Kurt got the perfect shot of the balloon releasing.

Just in case you're curious, no, it hasn't gotten any easier. In fact, I find that it has become more difficult as time goes on. A touch of the disbelief and shock wears off to reveal some very tortured feelings. I find that most of the time, I can manage to put the disbelief lid back on in order to save the anguish for later. Works for me.

Well, let's see....that brings us to the end of the first week, only 25 more to go to get caught up. You see how this works?!! I promise to have more info soon but for now, I'm signing off. Thanks for reading and please send JR's soul your most wonderful thoughts.