March 27, 2013
Today was my Mom's Tenth Anniversary (and Jack would be ten this summer -- I still can't believe what happened to this grandson she never met, though I guess she has now.) After meeting my friend Jen for lunch, I walked over to the Rose Kennedy Greenway where we have a stone for my Mom at the Mother's Walk. To my great surprise, the city had installed a somewhat out of place bird house about five feet from my Mom's stone! My mom had a collection of ceramic birds that she kept in one of those curio cabinets. Because of her love of birds, I had just started making a bird-themed quilt out of her old clothes, so you can imagine my surprise when I came across the new bird house. I walked up and down the length of the Greenway, to see if there were others, but no, this was the one and only bird house in the whole stretch. I was weirdly happy for my Mom. She has done such a fantastic job over the past ten years, sending me awesome bird-sightings whenever I needed them most. I'm so happy that they gave her a bird house for her dedication!
In other news, the Longwood Symphony Event was a trumpeting success. It was a truly lovely night and we raised $50,000, bringing our totals up to $300,000. We are so excited for the larger projects that we are now able to commit to...when we first conceived of The Bean, we thought we'd be able to give families a hundred bucks here and there, but nothing like the tens of thousands that we're giving to large institutions that will help hundreds of families over the years. All of our supporters are literally helping us change the face of this disease and we are deeply humbled by everyone's generosity.
On the home front, it's all French, all the time. Emma went on an exchange to Lyon for the month of February and her French counterpart is coming here for the month of April. I'm taking a French immersion course at a local high school, hoping to relearn my native tongue, and this summer we are planning to spend three weeks in Provence, after a week in Paris and a visit with Matt's family in England. In anticipation, I've mastered the technique for crusty French baguettes and started knitting again, something I haven't really done since weekends with my Memere! I read Rimbaud's 'A Season in Hell' in the original French -- that guy was one morose puppy. How have I found the time to do all this, you may ask? By living unplugged. My new year's resolution, among other things, was to give up the internet. It was brutal at first, but now it's just like the old days, when I had the spare time to read, or knit, or write letters, or organize stuff around the house, or hang with the kids, listening to music. It's pretty cool. The best part is not having to read about everyone else's perfect lives and constantly wishing that I was either someone else or somewhere else. Or having to read asinine comments on news threads, stuff like 'God sent the shooter' and other such nonsense. Or getting an email alert every time somebody that I vaguely knew in grade school blows their nose. It's really been quite liberating and a huge boost to my emotional well-being. Now, in the interest of a balanced account, here is my list of most-missed electronic resources:
2. Map Quest
4. Open Table
5. 411/White Pages
6. Library Network
8. Craig's List / Ebay
9. Online shopping in general
10. My friend Jen, whose regular emails had huge therapeutic value, and who I would have never met if not for a listserv.
Not much else to report. Now I just need Matt to come post this for me...
December 12, 2012
Jack is now seven years gone. This was the day the world wouldn't let me forget, anymore than when Jack would have been five on 8-8-08 and advertising for the Summer Olympics was everywhere. I don't know whether it helped or hurt to have these interesting dates, I just know I'm glad it's over now and I won't have any more looming over me. I always thought it was very clever of Jack, being half-English, to have dates that worked both here and in the UK (since they list the day before the month, so 8/8 and 12/12 are the same on both sides of the pond.)
This anniversary has me thinking about The Seven Year Itch, and while I never saw the movie in its entirety, I get the sense that it applies to more than just marriage. It's about feeling restless and feeling tempted to live a different life, and as those feelings have been swelling in me for some time, I am most definitely feeling something of a Seven Year Itch today. It started intensifying this Fall when the kids went back to school and I was once again saying 'now what?' As devoted as I am to Jack and the thousands of children like him, it would be so liberating to advocate for something that isn't wrought with controversy. With pediatric cancer it's always been so complicated, and I don't know if it's because I'm too close to it, but there seem to be a million different camps and no united front. For starters, in New England, before you even get out of the gate, you have to first convince people that pediatric cancer is in fact underfunded, because they all believe that The Jimmy Fund is a pediatric fund. You will only be successful in revealing this truth to a small fraction of the population, and even they will hate you for killing their illusion that all is right in the world. Then there are those that won't support you because it's not their problem, sort of like Martin Niemoller's poem 'First they came'. Then there are those for whom you cannot exist because you represent their worst nightmare and they want nothing to do with you or your sick and dying kids, because, well, that shit's contagious. And I'm only partly kidding here, because some can't think about you as you're a reminder that they may be living and raising their kids in the crosshairs of a cancer cluster and who wants to be reminded of that, I don't care how much they loved your kid. So at the end of the day, you realize that the people who care the most are the ones who have been in some way affected by pediatric cancer, so you try to build coalitions there, but among them there are a million different opinions on how to slice this non-existent pie. Some lobby for specific cancers, rather than general funding. Some are only interested in research and nothing else. Some are focused on children who are 'on treatment' and not 'off treatment', or the different ways you might find yourself 'off treatment'. Some are only about traditional therapies and not complementary or alternative therapies. Some focus only on the child-patient and not the families. Most only care about the living, because where there is life, there is hope. Tell me what that's supposed to mean to someone like me anyway?
So where am I going with all this? I think I've figured a few things out during my seven-year-itch-mid-life-crisis. First, I will cut myself some slack and stop expecting to move mountains. We've raised about $250,000.00 in the last three years. It's not millions, but it's not nothing either. We have some interesting opportunities on the horizon, like the LSO Concert, that will add to our revenues and increase exposure. I have an exhibit of my photography at MGH from February-May and those sales will benefit this fund. I have joined the Board of Directors for Art in Giving, an organization which raises money for pediatric cancer through the sale of fine art. We receive credit for any purchases we refer, so if you're in the market, please shop www.artingiving.com and say Linda sent you. We have opened an account at Tufts Medical Center's Floating Hospital for Children to support two great projects -- personalized pediatric cancer care research and a proposed family palliative care unit. With an account in place, we are looking forward to raising funds through their events without the headaches of event planning. We are also looking to become more vocal on a national level through The Truth 365, an advocacy group that is working for fair funding in Washington. If you have twenty minutes of your life to spare, you must watch this video: www.thetruth365.org
So that's the direction in which I hope to take this fund, with more creative types of fundraising and a more focused spending approach. I love that we have left our mission open enough to fund anything of interest, but I also know that we'll have the greatest impact if we pick a fewer number of recipients. I will also seek to balance this work, which I have found all-consuming, with my many other non-profit and professional interests, in the hopes that I will find it to be less soul-destroying in small doses.
So for now, having struggled with the restlessness of a not-entirely-fulfilling life, I have made a renewed commitment to myself, and to Jack, to stay the course until his eighteenth birthday, at which point I will celebrate and proclaim our mutual emancipation. 8/8/21 -- it's a date.
October 13, 2011
Wow, what a long time since I've been here. First off, I want to tell our good friends the Crowleys that we are thinking of them on this day, the fifth anniversary of their sweet Cian's passing. We have felt so blessed to have their constant love and support over the years and cannot imagine what this journey might have been like without them, though I'm sure we both would have preferred it that way. Or maybe we could have met in some other way, that would have been the best all around. We also lost our oldest friend from our treatment days at the end of last month, Ryan Reardon. It boggles the mind to think that in the last six years that we've been 'off-treatment', our friends Norma and Paul have been scratching and clawing to keep Ryan here and to also give some kind of childhood to their oldest son Matt. In some ways, this disease was kinder on us, for Jack's amplified cells never gave us a chance to explore options we undoubtedly would have explored. Our hearts break for all they endured and I will never forget their amazing Ryan. Peace to all of our sweet boys.
Things here are otherwise good. I hit a rough patch last spring during the weeks surrounding my due date, but I suppose that was to be expected. It did cause me to rethink how I'd been handling my grief and to learn some good exercises for reducing anxiety and truly coping with the traumas that I've been deferring for years now. The result: I'm feeling better than I have in a very long time. I have to believe that everything happens for a reason, and if I hadn't suffered last year's loss, I wouldn't be where I am now. They don't call them wake-up calls for nothing.
Last June saw another successful Training Wheels bike ride and we are now over $100,000.00 for that event alone. We are already working on some great ideas to make next year even more of a success, such as offering a longer route for our more serious cyclists and getting someone to sponsor our jerseys so that we can offer those to everyone at one low registration fee. I've also been busy developing some materials for our other signature events, Hallow Bean Stands and Twelfth Night Lights. Now that the bike ride has a regular following and is turning into a good little producer, I'll be able to focus on some of the others that I've been neglecting. We've also added some awesome new programming, so check that out while you're here.
Quick update on Jack's sibs: Emma started high school this year. She's playing field hockey and taking an all-honors course load. Still enjoying the guitar as good decompression therapy, and I'm still loving to hear her play. Alex is in middle school. Her submission was chosen for the cover of the school directory, so she's already leaving her mark there. Lucy continues to be our little miss sunshine. She's devouring books at the moment, especially anything that has fairies, though she did just get through a pretty serious one about Pompeii. She continues to think about Jack quite a lot and has turned her room into a cancer charity shop, with a sign on the door and everything inside (toys, dolls, books) all marked for sale. The sign reads: Lucy's Love and Cansore Store. To my knowledge, she's never visited such a store, so the concept is pretty impressive for a first grader. And Jude continues to be a true life force. He's enrolled in a Child Development program at the high school this year, and I think there are times when Emma is known as Jude's big sister! Seriously, when we're out and about in town, people will call out to him and I'll ask E if they are associated with the program and she'll say 'no, they teach sophomore English' or something similar. It's hysterical. He is reminding us very much of Jack in that way, if you minus the big dollop of crazy. But Jack was exactly like that -- a man of the people, pressing hands and kissing babies. Never missing an opportunity to make a new friend. Walking into a crowded room and owning it in under a minute. We feel so blessed for each and every little hello that we get to experience through our second son in particular, but also through all of our surviving kids in general.
December 12, 2010
Eight years ago today, I was pregnant with twins. One let go early on and the other we introduced to the world as our third child and first son, Jack. When he was diagnosed with a rare and tough to treat cancer at seven months of age, our doctors opined that his condition was present in utero. It made me wonder if Jack was supposed to let go too, just as his twin had. It made me wonder if that would have been the easier thing for everyone. He died five years ago today, and in that time I have waxed poetic about the value of his days here and how blessed we were to have had him for any length of time. We might have lost them both, I would say, though the sentiment was purely hypothetical. Until now. This fall we were blessed to be once again expecting twins. I naively thought that somebody up there might actually like us. That whoever is in charge of these things had taken note of the lives we've been leading and how we've tried to have some good come from our heartbreak. That maybe, just maybe, we had earned for ourselves some kind of 'do over'. We lost the first baby at three months and last week we lost the second at five months. So I guess in some way it was a do over, just not the one we had hoped for. Now I know how it would have been if Jack had let go those eight years ago. So today when I went to say a prayer for Jack, as well as the dead babies that are still inside of me, just waiting for their appointed time to be delivered from me and disposed of in some despicable way, I gave thanks for the 855 days that Jack was on this earth. Most would say that this life had been cruel to Jack, to us and to his siblings, but they would be wrong. Because of his days here, there was great joy, precious memories and priceless photographs. We learned a million things about him that we will never know about the babies we were expecting this fall and he got to experience enough of this world to have a long list of favorite things. He knew just how delicious iced-cold chocolate milk tastes when you're really thirsty or how much fun it is to spin on the tire swing until you're practically hurling said chocolate milk. I know what it felt like to have him run across the room with his arms wide open, yelling mummy mummy mummy until he grabbed hold of my leg. I know what his voice sounded like and am lucky enough to have him captured both in video and audio. I know that when you asked him if he could say a really big word, like pterodactyl, he would reply with a simple 'yes'. I know that LaLa was his favorite of the Teletubbies and that he would always say bye to our house as we were pulling out of the driveway. Followed by a 'see you later house' and lastly, 'I wuv you house'. I remember how special he could make you feel just by extending his hand for holding, and when I would take his hand in mine, I felt like we were the only people in the world. We spent over seven hundred days treating our son's cancer and eventually had to watch as he let go, three years after his twin had. Most would regard that as an unmitigated tragedy. But now I know what the alternative might have been, and I can't help but to rejoice in those 855 days.
October 26, 2010
So today is a weird day for us. Yesterday Jude was two years, four months and four days old. The fact that it was completely uneventful and he woke up this morning to be two years, four months and five days old puts us in unchartered territory. It was strange when Lucy outlived her brother, but we are at least used to seeing our girls age in the ordinary course. This fall has been something of a time warp for me, with everything reminding me of this time five years ago. Another strange milestone -- I can't believe we're coming on to five years since Jack left this earth. Nothing has changed for me on that front. I still vacillate between thanking god, or whoever, for entrusting me with an angel and being completely pissed off that he's not a healthy second grader, picking out his Halloween costume like the rest of the world. But, as the season of giving thanks approaches, I do have much to be thankful for. Our Training Wheels event raised more than $60,000! That's three times more than I had hoped for this first year. As a result, we've been able to make so many more gifts than originally thought, and I continue to feel immensely fulfilled with all of our Magic Bean works. As always, I credit Jack with all things that are just too good to be true. So I'll leave you with some of my recent double visions.
Sibling Love: Two Year Old JMRs with Five Year Old Ramsden Girls
2005 HONEY POT HILL HONEYS 2010
Class Clowns -- Then and Now
June 24, 2010
Today I am officially the mother of a teenager, so I'll begin there. I guess I blinked sometime over the past thirteen years, but I find myself completely baffled and bemused by the vision that is my eldest daughter. She's measuring in at 5'9" and is showing no signs of slowing. Like most reds, she is both feisty and spirited, but also has a real kindness about her. The report card continues to be straight As and the guitar playing is extraordinary. Her rendition of Train's 'Soul Sister' at Camp Sunshine this May blew the crowd away. She gets none of these things from me. And today she boarded a plane bound for Colorado in her first unchaperoned adventure, the first of many I'm sure. And I cried like a baby. Not just because she is so grown up, which she is, but because we are those other people that bad things happen to. I know that losing a child to cancer does not insulate us one iota from future tragedy. I am keenly aware of how fragile and fleeting all this is, and whenever I feel like we're in a good place, or smooth sailing, I wait for it. We are in a good place right now, so I'm just waiting for the next bad thing to happen.
Alex and Lucy had great years too. Al will be in fifth grade next year, her last year of elementary school. Lucy will be going to kindergarten. Alex is thriving on the piano and Lucy will start playing next year. Al hung up her figure skates and will play ice hockey next year. Lucy picked up the torch with figure skating. They too are spunky and spirited. I have no shortage here of big personalities.
Jude just turned two and is completely insane. We are literally living the adage 'Careful What You Wish For'! Honestly, he's lucky he's as cute as he is. Cute doesn't begin to describe it...he's a real stunner, like movie star gorgeous. Olive skin, blue eyes and blonde afro-like curls. And his sweet hugs and kisses are almost making up for some of the insanity, but he is a veritable ball of madness. Speech is now his only delay, but he's making great strides. His physical growth has astounded even his doctors -- 54% for height and 37% for weight, on a kid that wasn't even on the charts until he was 10 months old. Every break that we've needed has gone our way...perfect cleft palate repair, perfectly restored hearing, hep-c (finally!) negative, hiv negative, no long-term effects from heroin withdrawal. All of these were open questions when we took him into our hearts and I know that we have had a very special guardian angel looking after us all.
Speaking of Jack, we've just had our first annual Training Wheels bike ride and it was a fantastic success. We had thirty-five cyclists and are currently pushing $40,000 in donations! I am so excited by these early results, as it has definitely given me the proof of concept that I was looking for in deciding upon a primary fundraising event. I was so worried about volume control for this first year that I didn't even advertise or do any PR. Now that I know how to run the thing, we'll add both of those for next year and hope to double our numbers. I'm just so happy about all of the great programs we'll be able to fund and families we'll be able to help. To all of our riders, volunteers and donors, Thank You so much! To my sweet boy, thanks baby. You've always come through for us, and even though mommy had no business being out there, you carried me as always. I love you!
January 31, 2010
Happy New Decade! We are gearing up for our bike ride in June (pun intended.) We've had some roadblocks getting our fundraising software and rider pages up, but hope to be coasting along shortly (are you groaning yet?) We finished 2009 with a very touching salute to our little boy -- we had the children's room of our local library dedicated in his honor. While this is not entirely Magic Bean related, as we used our own funds (or rather Jack's college funds) for this very special project, I did want to give everyone a glimpse of what was essentially Jack's memorial. Four years ago we didn't have the wherewithal to do anything more than to huddle around a pretty little box in a private service for six. Although I know that was the right decision for that time, especially as there were no relatives on either side that were in a position to help, it has always left me lacking in the closure department. The Library Dedication was exactly as I hoped for a meaningful memorial, one which remembers the honoree for a special characteristic (in Jack's case it was his love of one particular book) and allows everyone to celebrate a bright light rather then mourn its loss. Over a hundred people gathered for the event. Matt and I each spoke, we read one of Alex's poems and Emma treated us to the Hawaiian version of 'Somewhere Over the Rainbow' while Lucy danced around like a celestial being. It was hands down one of my top Mom moments. I was so proud of them all, and all I could think about, particularly as Emma strummed away on her guitar, was the last time we were all together listening to that song. We were in Hawaii trying to make some much-needed memories with Jack outside of the hospital setting -- Emma was seven, Alex was five, Jack was almost two and Lucy was just six weeks old. Five years later and here we were, celebrating our angel, celebrating each other, and generally celebrating life. It was huge, and I have to say, I have felt such peace since that moment. I wouldn't call it closure exactly, but something approaching the end of one chapter and the beginning of the next.
Last year's season of giving was also very generous for Jack's Magic Bean Fund. We had a local piano teacher donate the money she had been paid for lessons and a young couple donate their used Jeep Wrangler which we have just sold for $4,000! We were so touched by both of these gifts as they really speak volumes for the selfless act that is giving. In one instance, the teacher gave of her time and turned that into cash for charity. In the other, a couple gave away a trade-in opportunity to give us our single largest donation yet. So many people opened their wallets in support of Magic Bean during this past year of economic downturn and we are truly grateful to you all. So many families will benefit from your generosity. Just to give a little recap of our giving, we were able to help four families that were in need of financial assistance. For one family, it was help with funeral expenses. For another it was a wish trip for a child that did not meet the age requirement of other wish granting organizations. One family had both parents out of work (he had been laid off and she had just delivered their third child). Needless to say, most of these stories really hit home for us and the joy of being able to write those checks is simply indescribable. With every check I keep Jack present in our lives and reconsider the things that are to be accepted and the things that can be changed. On the research front, we made a donation to Giselle Sholler who is doing great things in Vermont for kids who have few treatment options. We supported Alex's Lemonade Stand research grants and opened an account with local researchers who are carrying on the pioneering work of angiogenesis. We have also opened an account with Camp Sunshine and are now in a position to start funding a family's stay in perpetuity. We can only do these wonderful things with your continued support, so please remember Jack's Magic Bean Fund in the coming year. We hope to be in touch shortly with more information about our inaugural ride, Training Wheels. Until then, stay warm and stay well.
November 26, 2009
November 23, 2005
As Jack nears the end of his battle, it is certainly harder to find things for which we give Thanks. We are of course thankful that he has been a part of our lives. Most people will never see an angel, yet we have held one in our arms for the past twenty-eight months. We could have lost him at diagnosis, or several points along the way. I think of the many ĎI wuv yousí that would have never passed his lips. We would have never known the sweet boy that insists on hugging and kissing and saying I wuv you to each of us before he goes to sleep. The boy who asks for his sippy cup at midnight and when itís handed to him, takes a big swig and says Ďmmm, yummy milk, tank you mummyí. The boy who says he feels good even though his eyes are practically swollen shut and while this monster is tearing at him from the inside. We have no doubt that Jack was sent here for a very specific purpose. We know that he has touched more lives than many of us could ever hope. He has given and received more love in his short life than any of us will ever know. So while we struggle with the Why and How of all of this, we give Thanks that we were chosen to be his family. Happy Thanksgiving.
Thatís where we were four years ago. If this is better, I donít know. I do know that we have found peace and something approximating healing. Last night I watched My Sisterís Keeper and I can say that Iím glad that four years have passed. In some ways it is very much about time and its passage. I am thankful that I have two talented tweens who fill this house with music and make me feel like Iím in a coffee house on those many afternoons when I seek shelter from the storm. Iím thankful that I have a preschooler who fills the house with drawings and laughter. Iím thankful that I have a thriving little boy who wasnít thriving not so long ago, and I feel great satisfaction in (thinking) that Iíve made the difference. Iím thankful that I got to know and love a little soul who was destined for great things but didnít quite get there. It means that he left work unfinished, and we are all too happy to pick up his torch. But I wonít sugar-coat it. This life is a hard one. We awake each day with a vastness that is left behind by those who are great. We wonder each day what we should do with that hole. Do we leave it so we can walk by it each day and wonder at its greatness? Do we fill it in and wonder at what weíve built in its place? Do we grab a bottle of bourbon and sit aside it whilst drinking from a brown paper bag? These are all viable choices. No one can tell us what to do with this hole. Weíve sought counsel from those trained in grief and healing, and yet we are left with the same questions we set out with. Four years later and all we can be thankful for is the passage of time. What are you thankful for? If itís family, have you told them? If itís a new job, have you gone to work each morning with a spring in your step? If itís your health, have you lived each moment with an appreciation that can only come from knowing you are healthy? If youíve said yes to any of these questions, then I say kudos to you. If you havenít, then I say why not? What would you give for one more chance? One more day to know what it is you need to know. I know what Iíd give. And if nothing else, on this day of giving thanks, Iím thankful for that knowledge. We give thanks for Jack, today and every day.
October 24, 2009
For those of you who have missed us on Jackís original website (www.jackramsden.com), we have moved! We hope to find this new space better suited to accommodate our growing family, so check back often as we will update this BeanBlog with current happenings of Magic Bean, our fundraising endeavors, family fun, random thoughts from the memory vault and, in the interest of full disclosure, anything else which might occupy my (at times) fragile mind.
It has been a crazy few years since I last did this thing called Ďjournalingí. When I left off, I was starting to sense that our lives had less and less to do with Jack, which I found deeply troubling. What Iíve come to realize though, in our time away, is that every aspect of our lives continues to be driven by our experience with pediatric cancer, and more particularly, with that magical time in our lives when Jack was here. So I will, from time to time, share some of the mundane and let you be the judge. Iíve become used to a life in which my four year old asks me why her big brother has to live in the sky, but maybe Iím desensitized to it all. Maybe these are the kinds of things that need to see the light of day for real change to occur, so that other mothers wonít have to answer such innocent questions from the mouths of babes.
There has also been lots of magic, and I look forward to sharing some of those mystical happenings with friends, old and new. I know that some of it will sound really Ďout thereí but for us, these signs are all that we have to remember that he was actually here. Skeptics beware.
One of the happiest things that has happened in our long silence has been the adoption of a little boy whom weíve named Jude. He came to us at four months of age through the Department of Social Services and we just went to court a couple of months ago to make it all legal-like. As a lawyer, I can tell you that this is the most fun youíll ever have in court! My three girls got to sit at counselís table, Jude ran around barefoot and the judge was all smiles. By sheer coincidence, it happened to be our Fifteenth Wedding Anniversary, and I canít think of a better way to celebrate than by welcoming new life into our family.
That said, the adoption process was not without its challenges. They might not get it right the first time, or second or even third, but it will happen as it was meant to happen. I was certainly beginning to think that it was a lost cause and then there he was, and I knew from the first time he was in my arms, I knew. So we named him Jude for the patron saint of all lost causes and we give thanks that he has come to take our sad song and make it better.
Jude has been with us now for nearly a year and in that time there has been much healing. Of course some of that healing came from ripping the Bandaid off and experiencing excruciating and blinding pain, but isnít that true of all things worthwhile? He had a cleft palate which brought us back to the same hospital where we had spent two years treating Jackís cancer. Talk about post traumatic stress. All of the memories of that time came flooding back as we walked the halls with this other bald little boy, who showed the same resilience and determination of his big brother. Jack treated us to many signs over the course of that weekend, and we were able to leave knowing that we had gotten the experience that you always hear on the radiothons. They fixed him. There was great healing and closure in going back for that Hallmark experience, but also great sadness in knowing that they hadnít been able to do that for Jack. I was so thankful for the complete healing of this child, but why not Jack? Why do some kids make it while others donít? These thoughts were also tempered with the reality that if our older son hadnít died, we wouldnít have been there with this other little boy, and as he claims more and more real estate in our broken hearts, we canít imagine not having him here. Life throws you some tricky shit, and maybe itís not for us to question. Maybe all weíre supposed to do is make the best of every day -- the good, the bad and the ugly. Thatís one of the coolest things we learned from Jack.