If I Had One Day With Him

I wanted to share the poem I've been working on. JR was great at writing poems so I thought I'd give one a try. It's a little rough but expresses how we are feeling at the moment. Thanks for reading!

If I Had One Day With Him

If I had one day with him which day would I choose?

Easter or Christmas or his birthday cruise?

Would I hold him and love him or let him run free?

Let him play baseball and climb up a tree?

Listen while he giggles with our new little dog

Try the new computer and have him read my blog

Go on an adventure on his bike with his dad

Buy candy and soda like he always had.

Would he want to dance crazy with his little sis

Or just run with the boys who I know he must miss

Play man hunt and basketball then the Buckner's new pool

Or go to T and Logan’s and break his bedtime rule

Listen to Godfather’s same silly lines

Ask Uncle Richie to read poems at bedtime

Show him the changes we've made to the house

Show him the spot where we buried his mouse

Hang in his room that's exactly the same

Bring him to star in his team’s baseball game

Buy him new cleats cause he outgrew his old

And a bike and some clothes and whatever I'm told

Go feed the lamas or help paint the wall

Go to the beach and watch the crabs crawl

Take out a kite at Cuttyhunk beach

Run down for ice cream - it's just within reach

Go to the diner for a shake and grilled cheese

And French fries and pancakes and whatever he please

Watch him catch butterflies with a nice brand new net

And a jar full of of fireflies to complete the set

Go back to Sloan Kettering to say “Thanks!” to the docs

The cancers all gone now I've regrown my locks

My scars they have vanished my port's disappeared

My family is happy and gone are their tears

Admire his shoulders for now they are broad

His legs still are skinny I love his whole bod

Bring him to Holmes School to go to fifth grade

See what would happen if he had just stayed

Bring home for me a Mother’s Day poem

Return books to the library you had out on loan

Give me a flash of smiling eyes big and blue

See if he’s grown as big as Matthew

Would the girls think he's cute? Would Holm make him laugh?

Would he still try the honeysuckle on the school path?

Would he play some lacrosse? Would he make the team?

Would he still be the boy I see in my dreams?

Or stay home from school cause it's snowing outside

Build Charlie a snowman and take my sled for a ride

I can't believe Julia can fit into my boots

And who is this Bailey at Kalle and Luke’s?

Buy him a boat cause he's in Opti 3

Beat Andrew and Lily in race #3

Picnic Point barbecue, corn on the cob

Fourth of July fireworks with the AYC mob

Go to his garden and dig in some plants

Talk to his teacher and watch him advance

Schedule a play date with friend Ryan Q and Ryan M

Or with Justin or Liam or with his friend Ben

Have Logan come over and go to the bog

Get his feet dirty, trip over a log

Finish the day by throwing some rocks

Feeding the elephants, playing with blocks?

Dinner with buddies Antoine and Nick

Daddy’s grilled skirt steaks and you get your pick

Addie will give you her one last little sweet

And let you have more counting Halloween treats

Hang out with Wrigley and the whole Servas bunch

Play some badminton have watermelon for lunch

He'd need a good hour to wander the hood

Meeting Bromley and Harley and Duffy - so good!

Would he care about Legos or Webkinz - oh please

He'd rather go shopping for stacks of CD's

Buy a Father's Day surprise while we're out at the store

Snow Patrol, Nickelback, Daughtry and more

That day that I long for I think it's today

Or maybe three years ago when he was okay

Or way in the future when he is a dad

And we could remember the good times we've had

Which day would I chose if I had the chance

Graduation or christening or his wedding day dance?

I hold all his memories so close to my heart

Still dream of his future and each brand new start

Wish he could be just a regular boy

That was all that he wanted he brought us such joy

All these heartbreaking thoughts swirl round in my head

What would life be like if he were cured instead

I wouldn't be dreading the 16th of Julys

Or designing his headstone to mark where he lies

I'd be planning his birthday for this coming fall

And watching his changes and calling him tall

His sister is almost as old as him now

His parents look older and hold onto a vow

Meet him in heaven and watch him run free

Love him and honor his his whole family

He has his new parents now aunt Claire and now Rich

Uncle Ron takes him camping and throws him a pitch

His new friend Mikey is on second base

Abraham Lincoln covers home plate

Grammie Sue has him over to meet Grandpa Hal

Herman and Eleanor are who he calls Pals

He likes to take care of his baby cousin Doug

And cuddle with Sarah and give her a hug

When I sit with my husband in such disbelief

Why would God give us a life full of grief?

We'll never have answers or know what his life would be like

At Nine and three quarters he's just past a tike

All we can do now is honor his name

And stop trying to figure out who is to blame

I just know I love him and miss him so much

Long for his laughter his face and his touch

A Little Information Helps

I cannot believe that a year has passed since I last wrote. I haven't been able to face this blog. For some reason today I felt like sitting down and getting to it. Perhaps I'm just avoiding other things that I should be doing but I hope this becomes a more frequent event.

Not a lot has really happened with a few notable exceptions. We added a key new family member in our little miniature dachshund named Buddy. Addie wanted a boy dog and wanted to name him after Jim's nickname for JR, hence Buddy. Cousin Chris & Andrea's neighbor Denis heard our story and was thrilled to give us our fun-loving and energetic little puppy and we have all been delighted with him. He's been a great addition and is the subject of Addie's blog-style newsletter named the Buddy Chronicles, complete with articles and dress-up pictures. He's accompanied us on several trips and is great company.

Addie and I went to Paris to visit my niece Lindsay who was studying over there last Spring. We spent a week last summer with our dear friends the Trepps down in the Outer Banks. We escaped Christmas with a trip to the Dominican Republic this past December and avoided the earthquake in Haiti by a mere two weeks. Addie started fourth grade and has been knocking the cover off the ball at school. Kimberly's mother survived a bizarre illness and we lost our neighbor Frank, our friend Claire and my grandmother Sue. Many more things would happen over the year and this could end up sounding like a Christmas card insert but I'd rather get back to the real subject at hand; are our hearts mending?

My first reaction to a question like this is a resounding "no" but things are a little bit different. I am not sure if this is an indication of mending but more like getting used to living with pain. Jim and I are still dazed and confused and asking ourselves "Could it really be true?" and "Why was it JR?" I remember one of the doctors telling me that about 180 cases of pediatric GBM's (glioblastoma multiforme) occur each year. The odds of that happening to JR are virtually impossible yet here we are without him. It doesn't make any sense. Our friends-in-mourning the Czechs also lost their son to a different type of brain tumor that shows up in about 150 children a year. Even more impossible but yet they are in our same predicament. How does anyone process this and make sense of it? We certainly have no clue.

About a month ago, I attended a presentation, accompanied by my BFF Kimberly, on cancer gene therapy for brain cancer. Sounds like something that would make most people run screaming but for someone in my situation, it was very informative and helped me put a few things to rest. For example, one of the first things the panel of highly-qualified experts in this field of research pointed out was that GBM's (the research disease of choice since it is so aggressive that they can attain results very quickly) are essentially 100% fatal. The standard of care can prolong life by a few months or so but there is no cure. I believe my last blog entry let you in on some of the uneasiness I have felt over my choices for medical care and some of my "If only I had tried this" worries. Knowing that there was nothing to stop JR from his horrible fate at least frees me of the guilt I feel for not finding a successful treatment program. It doesn't get him walking through the front door but unfortunately nothing I could have done would have yielded that result.

Another piece of information that I learned or perhaps confirmed was that with all the research through the past 40 years (GBM's are much more common in adults so research has forged ahead. Side note here - not 100% clear here as to whether or not the adult research is even relevant to pediatric GBM's but for the sake of argument we'll say it is) has not given anyone any information on why these tumors form. To this day, nobody has a clue. Again, so awful, but I can stop questioning every little thing I did for JR and wonder if it caused his illness. We may find out down the road that some crazy obvious lethal something or other is present in JR's room or in the brand of peanut butter that he liked but as for now, there is no known cause. Again, a little sigh of relief that I cannot blame myself repeatedly for causing JR harm but it again does not bring him back.

So where does that leave us? I think we are in a more pure form of both missing him and feeling very bad for him and how he spent the last months of his life. There are still so many unanswered questions but most of them now relate to what his experience was and how much did he suffer and what could we have done differently for him. I regret not taking his Make-A-Wish trip to Hawaii and not just totally going all-out every single day we had together. I wanted to keep things "normal" for him so that he felt secure and promised him that everything would be okay. The only thing we know for sure at this point in time is that we love our children and that will never end. I feel like there could be no-one in the world that could have more love than I do but I am sure I am in a huge subset of people on this Earth called parents. I also know that I will never get over the loss of JR. It's a proven fact amongst bereaved parents. How we handle it through the years remains a mystery but the first 19 months and 8 days has been heartbreaking. The key for me has been to make sure I have alone-time to allow my grief to happen. That and wine therapy. I have my wonderful little posse and I am so grateful.

I have so many stories to share about the amazing people that have shared with me as a result of our tragedy. I am now an absolute wealth of knowledge about people experiencing loss and each story is a gift. It is helpful to share stories. It is helpful to bring JR up in conversation. It is helpful to help someone else. Mostly, it is helpful to be around people who are not afraid to show that they try to understand and that they are remembering JR. Some of the most amazing support has come from people who didn't even know JR. In my next blog entry I will strive to relay some of these amazing stories. For now, thanks for taking the time to read my thoughts and for thinking about my son.

Remembering Last Spring

It was a year ago last week when we learned that JR's tumor had returned and we were in the process of deciding what our best course of action would be. It is haunting me because no matter what we decided, we would never know if a different decision would have had a better (or worse???) result. We did know that it had come back quickly and was aggressive (nothing showed up in his Jan. 3rd (2008) MRI but 7 weeks later he had a marble-sized mass). We'll never know if the decision to remove the tumor right away via surgery was the best thing to do or if we should have done more exploring to find doctors who might have had success with different approaches. It made sense that if his treatment wasn't working and we were going to try a new protocol, we might as well start with less tumor rather than more. One thing we were sure of was that his doctors were doing their best and cared deeply about our son. We are fairly certain (not 100%) that his fate was sealed from day 1 but I continue to research the topic to see if there was something that I missed. When you have a team of about 12 pediatric Sloan Kettering cancer doctors from a spectrum of disciplines, from neurosurgery to neuro-oncology to neurology, etc. at your fingertips and 11 out of 12 of them decide that surgery is probably the best option, it is hard to question or challenge.
One thing I have learned through my reading is just how complex the issue of pediatric brain tumor research is. There are about 120 different types of brain tumors, and can all act differently in different host brains, especially true of a developing brain. Dr. Khakoo and I discussed some of these things over coffee that crazy Rockefeller Center day. I asked her if JR's tumor (high-grade (4) glioblastoma multiforme in his right frontal lobe) was actually more of an adult tumor since it is relatively common in adults and fairly rare in children. Her answer was careful but the message was that the tumors rarely ever seem to act the same way. I've been thinking that maybe I'm missing something here but the truth always seems to come down to "maybe sometimes" or "it depends". I saved this report I found that explained the main areas that needed research for brain tumors. It was a round table-type discussion held at a conference of all these researchers. There had to be tens of thousands of variables that needed research (that number could be naive but seems somewhat realistic). And even if the cancer presents itself as being similar to a categorized type from the beginning, it can morph and go along its own unique path - a moving and morphing target. The worst part, at least from my experience, is that this cancer can suddenly jump from one location into the spinal fluid as it rinses through the brain (JR's experience). Some strange new version shows up in spinal fluid and ventricles and meninges. I am still confused but I think it was this part of the cancer adventure that took JR's life. I remember doctors chalking things up to disease progression but the MRI's not showing much evidence. It was so maddening. It still is.
One of the comforts I had initially was that JR died peacefully and innocently and that I did all I could. At this stage, I feel far more responsible for his death and wish that I had been much more of a pit bull. Again, I'll never know if anything would have changed. There were no do-overs. One shot and I didn't get the job done. I know Jim has similar feelings of failure.
Another thing I've discovered is the absolute chaos that parents are thrown into when their child has a brain tumor. If I were to, say, discover that I was infertile, I could go to a government-sponsored website and find out success rates of doctors who dealt with infertility. A life-threatening childhood illness like a malignant brain tumor - different story. Even now that I want information that I can actually read and not fall apart (OK I fall apart every time), it is STILL not out there. I can get explanations of the brain and what the different types of tumors are, but that's it. I guess when you have such a high mortality rate, no-one wants to be the one that everyone flocks to. However, it seems like if everyone is out there trying their hardest to cure this, perhaps research dollars should be focused on certain tumor types for certain institutions. I remember one parent told me while I was in the playroom at MSKCC that her child was in for his 5 year visit (5 years is typically considered "cured") from a neuroblastoma. I think he was initially being treated at Dana Farber in Boston and was not given much hope. Of course Dana Farber is known as a cutting edge cancer center. No one told this mother that there was this crazy good neuroblastoma program 200 miles away at MSKCC where people from all over the world come. She found out by chance and it saved her child's life. I might have a few of my facts wrong but it's an example of how you go to the place that you think is the best (and it very well might be) but you have no idea if it actually is, how many cases of this they see, what their success rates are, if there are any surviving cases (a question you don't want to ask), etc. There's no central registry, no true statistics about care and medication types, on and on. You are thrown into this medical world of terms and hospitals and neuro this and that and leptomeningial and MRI and EEGs and shunts and mediports and levels and bactrim and dilantin and feeding tubes and morphine and zofran and diastat and what's that stuff called again - the one that revives you when you might not make it? I forget but know we used it once in the urgent care room at MSKCC and had it on hand at the POU. I remember the one nurse (Reese, one of my favorites) was putting a bottle of it on the shelf once and said, not on my watch. I was happy.
Some of the pediatric-oriented websites and not-for-profits will get into some detail but will quickly change topics when it comes to survival rates for a Stage 4 (even though it's called grade 4) cancer, just say that there is a significant decrease. Where to go? No info at all. Who is the best, no info. You read about surgery, radiation, chemo and perhaps a second surgery. Then you read about late effects, things that might happen to your child once they've survived and continue to age. Not much in between. Brutal stuff.
I have so many more observations to pass along, all intended to outline the things I'd like to dedicate a lot of time to changing over the course of my life. Writing these things down helps to strengthen my resolve. It's the only way I feel I can honor JR properly and to help make his brief but wonderful life have some extra meaning. I miss my beautiful boy.

Acts of Kindness

Jim and I have been on overload with missing JR, posing the "Why us?" question and spending time with Mr. Kleenex (often times accompanied with Mr. Fermented Grape). One of the things that really puts us in a puddle is the random (and planned) acts of kindness by friends, family and often-times relative strangers. I won't be able to recall all of them in one short writing session, so if you are left out, it certainly doesn't mean that you have gone unnoticed - no doubt we've cried around the fire about it, but I need to write about some of the wonderful things that people have done for us.
Where to begin? Even before we lost JR, while spending endless nights at MSKCC (that's Memorial Sloan Kettering Cancer Center), I was visited by this nurse, sent by a friend of a friend. Nancy was the night nursing supervisor and she would come by in the evening to check on us and often caught me in my darkest hour. Now who would want to continue visiting me in that condition? She did! I still feel amazed that this wonderful person would sneak into my room and hold my hand in the middle of the night. Thanks, Nancy. I think about that all the time.
The gifts, the flowers, the dinners, the donations, the cleaning lady (thanks, Martha), the books, the tributes, the necklace (Ang), the emails, the thank you note help, the lawn mowing, the "I understand" glances, the let's get-together's (that's my "Kimmy"), the trinkets at JR's gravesite, the Addie dates, the hand-knit prayer blanket, the hand-carved St. James statue, the endless (still) cards and the stories of loss that are constantly being shared with us all contribute to our grief journey and give us that leg to stand on. Thank you to everyone who has helped. A small percentage of you have received my thank you notes and there are many more coming, so when I look at the list of the people I have not yet thanked, I cringe but I know that you all understand.
Two and a half weeks after JR's passing came this extraordinary event hosted by our friends at American Yacht Club. When you think of putting on a "surprise" fundraiser in 2.5 weeks, I would think you'd have a barbeque at your house or slide show with some friends or some other get-together with friends. Not an entire family regatta in memory of your son. The Jibe for JR (J4JR) regatta on Sunday, August 3rd) was organized in record time and attracted hundreds of people for the first-ever (I think) barbeque and family fun-type event of its kind at AYC. The J4JR Committee (Pam, of course, Kelly, Missy, Vanessa and Nora) also managed to raise an amazing contribution to the JR Schoen Memorial Fund, also set up by members of AYC. Our family had no idea what to expect when we arrived at the club on the morning of August 3rd. It was a spectacular day although we were scared, sad and overwhelmed. We were greeted at the dock by friends and some family members and boarded the Giglia’s boat and were treated like royalty. We watched the regatta and couldn’t help but picture JR right in there amongst his good friends, thinking they had learned to sail but still saying things like "what's a starting line?". We were greeted way out in the Sound by a stray monarch butterfly and we knew right then that JR was with us. Before returning to the lawn, we took the boat out for a quick sail and the wind kicked up and we felt smiles on our faces. We were so amazed by what had just unfolded.
We then returned to the lawn and realized that people were carrying food that they had made at home and we saw our friends cooking and serving food. It finally hit us that AYC had given permission and the full use of the facility for our fellow members to run a regatta for $1 per person and allow people to bring their own food and to donate their time and labor so that committee could somehow pass the hat and help out our family all in memory of our beautiful 9 year old son. We cannot imagine a more wonderful and caring group of people. We are forever thankful -
to the Flag Officers for letting it happen, the J4JR Committee for making it happen, we thank everyone who helped put together the JR Schoen Memorial Fund, everyone who brought food, cooked food, donated hamburgers, took out our friends in their boats, donated shirts and party favors, ran the race committee, put up signs, collected contributions and the thousand other things that all happened to make the event possible. Not one person ever even let on to us that they had helped but just did it out of the kindness of their hearts and asked for no recognition. It was so amazing, we are so humbled and we will always be so grateful.
Then there was the JR Forever First Annual Memorial Walk. What do I say for that? My girlfriends here in Darien put on this walk on JR's 10th birthday on October 11th. Have you ever tried to have streets closed and flyers mailed to schools, t-shirts printed (with a professionally-designed logo thanks to the Leunis duo), accounting set up (Dianne), parks and rec on board, town on board (including first selectperson approval) brought in corporate sponsors, t.v. coverage and the myriad of other tasks that it takes to have a town-wide event like this? In six weeks? If anyone who had ever tried this before asked you if it was possible, you would be laughed at. Not my group. Pulled it off without a hitch (Kimberly at the helm - let's be realistic). With the group I had, there were no "no's". Just success. The walk was held on a gorgeous fall day, about 400 walkers made a loop around one of the most beautiful waterfront neighborhoods in the world and returned back to a beach party and birthday celebration for our son. Hard to believe he wasn't physically there. It would have been the best day of his life. We raised over $15K for two local charities - Post 53 which is our all-volunteer ambulance squad here in town (BTW - our ambulance squad is staffed by volunteer HIGH SCHOOL students, it's a fascinating story in itself) and Playground by the Sound, a group organized to bring a playground to one of the Darien beaches, something JR would have wanted very much. What a peaceful and spiritual event the JR Forever Memorial Walk ended up being. Thank you to everyone for that memory.
I wish I could type as quickly as I can recall all the special things. As I scratch the surface, I keep thinking, "Oh, I've got to include this" or "oh no, so-and-so is going to think I didn't appreciate that". I've only just begun. However, for the purposes of this entry, I'm going to include 2 more biggies and sign off! My head is so cluttered (just like my house) that if I keep going on and on, your eyes will surely glaze over.
OK - I got this email from one of the mommies from the Holmes School (JR and Addie's elementary school) sometime in August (maybe even late July, if I check, I'll get completely distracted). I had never met her, didn't know who she was but she came across this reading that she wanted to share with me. I read the story, cried and immediately replied to her to tell her that it was the same thing that I had read at JR's funeral. What are the chances of that? Sorry to say that so many of the emails I received, although all were read, didn't get a reply as I was so overwhelmed and if I was in my typical despair, I couldn't function enough to make that response. However, I responded to Claire's email as it was such an amazing coincidence. Within a few weeks of that, Claire emailed back to say that she was wondering if it was OK if she dedicated a golf tournament to JR's memory. I said OK and tucked it away in my mind (without actually registering it) like I have with so many of these crazy-generous acts that have all taken place. Shortly after that, she sent me an email invitation to the 4th Annual Brennan Golf Tournament, Dinner and Silent Auction to benefit the JR Schoen Memorial Fund. I read this email and had no idea what she meant. I checked back in my email and sure enough, in writing, I had been completely informed and had completely signed on. What I couldn't understand is how this whole thing came about. Jim and some of his friends (especially the rugby gang) were friendly with the Brennans and had spent some quality time at their friendly neighborhood establishment in Shippan. I emailed around to find out who had put the bug in their ear about JR. No-one fessed up. Jim even went in to Brennan's, saw one of his buddies and said "Do you know who JR Schoen is?", to which he replied "no". Jim said that JR is his son, to his buddie's amazement. Turns out that despite Jim's ties with many people there, the tournament was dedicated to JR based on the goodness of Claire's heart and how bad she felt for a family of (what she thought were) total strangers. Eamir rocked it. It was a great day and I got a chance to meet everyone at the dinner. Shortly after, I went to Claire's house and she and Eamir gave me this crazy fat envelope. Unbelievable. While we still have the majority of the envelope and plan on donating it to JR's Foundation (for pediatric brain tumor research - still in development), we did tap a little for our Escape Christmas trip (a story for another time). After all that, Claire is planning on helping get this blog published. This is someone who I didn't even know a few months ago. Talk about your good people in this world.
I promised just two more stories and I'm sticking to it. The second story is another one of amazing coincidences and timing and goodness of people. Kimberly and I decided to take the kids to go see Wintuk - the Cirque du Soleil (sp??) performance at Madison Square Garden. While I was going to be in New York, Addie and I could go and grab a coffee with my great friend and JR's doctor, Dr. Khakoo. Kimberly and I were thinking about taking the kids to go skating at Rockefeller Center since it was now December and Christmas in NY and all that. I looked up the info on the skating rink and saw that it happened to be the night of the Rockefeller Center tree lighting. "Forget it!!" we said, way too much of a zoo, wouldn't go near it. One thing that I did notice, however, was some publicity saying that Hannah Montana would be performing at the tree lighting and one of the very few items on Addie's Christmas list was Hannah Montana (HM) tickets. I had looked up that one and saw that she wasn't touring and felt bad. Again, I tuck it away and kind of forget about it. A few days before we are set to see Wintuk, I sent out an email to some of my friends that have ties to NBC asking if anyone might be able to get me in to see the tree lighting in hopes of catching HM herself and rocking Addie's world. I quickly get a response from neighbor Barry who gets the wheels in motion. Lots of background here but get this. We go into the city, see Wintuk and Barry and I are calling back and forth a few times and he told me that he could get me into NBC. He also let me know that HM would most likely not be live, something that I hadn't even told Addie about so that if nothing happened she wouldn't be disappointed. But I thought it would be a lot of fun for her to see the tree lighting (only if we can do it as insiders) since we were going to be there anyway. We get done with the Wintuk and grab a cab up to meet Dr. Khakoo near MSKCC and Kimberly and her kids leave to go home. I spoke with Barry and he said that he thought everything looked promising for the lighting and to let him know when we are on our way back to midtown and he would meet us (at 30 Roc) and show us around. Great! Fun! I was dragging Addie around on pure adreneline and she was about to collapse, poor thing!! I jumped in a cab (Dr. Khakoo was the cab-finding master) and got a message on my phone to call this woman in New Rochelle as soon as possible as she had the tickets available for the lighting. I called right away and she was so pleasant and put me onto this person at NBC who would come meet me in the crowds and bring me into NBC's tree-lighting party. I thought, wow, Barry, you are really connected!! Of course at this stage, my phone battery is dying and there was complete grid-lock in midtown. We were on Park Avenue and the cabbie told us we'd have to walk the rest of the way (you must know how far Park is from 6th Avenue especially on this crazy night). Addie was exhausted and I literally gave her a piggy-back ride to Rockefeller Center (I'm now getting very late) while running. All of the foot traffic is blocked anywhere near Rockefeller Center, so I'm running with Addie on my back down to 44th street and around and up 6th Avenue until I finally (after illegally storming some of the traffic dividers) reach my destination. I called Mary Ann from NBC (turns out she was quite a VIP at NBC) and she came and met me and took us by the hand and brought us to this party. We were amazed - it was right on the rink and we sat at a table amongst some of the top execs at NBC and a few actors that we recognized. We were watching some of the performers and waiting for the 9pm lighting (just a LITTLE late for a school night but what the heck). All the while, I'm thinking Barry really has a lot of pull. I finally check my phone (I know by this time I only have one or 2 calls left on this pathetic phone of mine) and there's a message from Barry wondering where I was. I called him and told him I was finally at the party and thanks. He said, "What party?". I said, you know, the one you organized for us to go to. He told me that he hadn't organized for us to go to any party and that he was just waiting for me to get there. How could that be? We had just been escorted by a top exec at NBC to the super-exclusive NBC party and Barry had nothing to do with it? He said he had never given anyone my name, let alone my cell phone number and couldn't figure out how I could have possibly ended up there. Addie and I had a great time and someone who was sitting near us told us that our table was actually reserved for Britney Spears and if she showed up that we would have to move (she didn't show up but the magic of TV showed her there anyway!!). About 10 minutes before the lighting, we were let out onto the rink and had front row view as the huge beautiful tree went all mesmerizing on us. Addie liked seeing the Rockettes the most. We caught the train home and immediately started the grapevine. Who had this organized? Days later I got my answer. Turns out that Mary, another great nurse and friend from MSKCC saw my original email and put her own wheels in motion, knew that we were meeting with Dr. Khakoo and that we were in the city and on our way down to Roc Center and had her friend from home call me and get in touch with NBC. All on a very grand scale. All without my knowing it. Do people write stories about this? Probably not because no-one would ever believe it. People just don't do things out of the kindness of their hearts anymore do they? I beg to differ. It's all over the place and I'll have many more stories to prove it. Although it's very hard for me to get out of my own way these days, my heart is full of love for all the kindness and will always be full of love for my beautiful boy.

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.

A Memorial Fund

Our wonderful friends have set up a fund in memory of JR as many people have asked us what they can do to help. In lieu of flowers, we wanted to make this fund available as follows:
JR Schoen Memorial Fund
Citi Smith Barney
399 Park Avenue, 12th Floor
New York, Y 10022
In addition, they are working on a foundation that we will use for making something good come of all this sorrow and hope to announce a fund raiser in the months to come. Thank you so much for the outpouring of condolences. We are so touched by how much JR meant to so many people.