Saturday - July 19, 2008
July 2008
Summer finds us struggling (enjoying? cursing?) swelteringly hot days with plenty of thunderstorms and greenheads (biting flies for those who live outside of the coastline of Massachusetts). We savor the days with blue skies and the crisp snap of fresh vegetables plucked from the fields at Appleton Farms.
As always, life now is a mixture of dashing ahead, looking backwards over our shoulders, stumbling (and occasionally falling), standing still, or taking one more step and then finding the pace and catching our wind and taking strides…again.
PRAY FOR: The journey continues for many families. Friends and neighbors Ethan and Matt and Kassie and Sarah continue to thrive. Essex-native Brodie is challenged by cancer this year. Friend Sydney finished treatment for leukemia, remains in remission, and she has recently (scarily but successfully) completed open heart surgery at Children’s Hospital Boston to repair holes in her heart. Lia, who has survived severe damage to her liver and two transplants following relapses, has made it home and is taking it one day at a time. So is vivacious Hannah, who visits the clinic regularly, and probably has a better vocabulary than some of the Harvard-graduated doctors that take care of her. Mary awaits the opportunity to go onto another chemo trail, hopefully managing (not curing) her hepatoblastoma. Christina, who also relapsed following one transplant, is on another chemo trial and has achieved yet another remission. If she can maintain this remission long enough, she will also become a candidate for another bone marrow transplant. There always seems to be hope, though it grows slim and narrow, like the crack of light you can see gleaming through an almost-closed door.
The journey continues for all of us, one way or another.
PLEASE SUPPORT OUR TEAM in the UPCOMING PAN MASS CHALLENGE:
Our sole annual effort to raise funds for cancer RESEARCH is dad (Chris’s) participation in the Pan Mass Challenge: Sat, Aug 2 and Sun, Aug 3. Along with his brother Jeff (traveling from Colorado) and brother-in-law Kevin (traveling from Chicago) and several friends (Team Bright Happy Power™) he will ride to raise funds for cancer research. Last year, 100% of donations went to Dana Farber’s Jimmy Fund, where Jessie was a patient for 6 years.
Please consider SPONSORING dad’s ride. Every contribution helps! The website is www.pmc.org and dad’s rider ID is CD0109 or visit this link.
In fact, you’re INVITED to a fundraising BBQ at Ipswich Inn, 3 East Street, Ipswich, MA on Saturday, July 26 (4-7pm) featuring beer and soda from Mercury Brewing and barbecued goodies from such local places at the Ipswich Butcher. Mmmm-mmmm. If you’d like to attend, it’s urgent that you RSVP by Monday, July 20. You can either visit the evite link or email us at info@brighthappypower.org and let us know how many people will be attending the kick-off party. Suggested donations are $50/adult or $100/family.
It’s dad’s third year riding in the PMC, but it’s the first time he’ll ride the 2-day route to Provincetown.
Jessie will be very close to our hearts and minds – more vividly than ever – in the next few weeks. Mom and Sarah and grandparents Ted and Paulette will volunteer at the lunch stop at Lakeville, where children who are on cancer treatment (Pedal Partners) come to meet their riders/teams. We will be painting the faces of kids who still hope to overcome cancer. And we will see Jessie in many of these children. And we will smile. And ache with hope. And sometime during the day, we’ll cheer for the Ipswich cycle team. We’ll hug daddy and the uncles and friends who are making this effort. And yes, we will weep, too.
TRAVEL: Briefly, we’ll just say we’ve had a whirlwind visit with friends from England. Mark and Lesley and other members of the Rotary Club of Ipswich East from Ipswich England returned to the United States a few weeks ago. They have stayed with us in the past, and of course, our entire family traveled abroad and lived with them for one memorable week just two summers ago. It was like a second make-a-wish trip for Jessie; one of those crazy choices you make, because life happens NOW, not sometime in the future.
Who could imagine what transformations those 2 years would work? This summer’s cultural exchange week was a busy one, with lots of educational trips to historic sites such as Lexington, Concord, Plimoth Plantation and Boston. We also shared America’s July 4th with our friends (there could have been irony to sharing Independence Day with British friends, but it’s old history now, though they joked about ‘having come to take it back’). Our family – including Mark and Lesley – watched fireworks from the rolling lawn of Castle Hill, accompanied by a pops concert and a picnic overlooking the ocean. *** aaahhhhh ****
WASHINGTON and WILLIAMSBURG: Our family joined Mark and Lesley, along with their friends Bill and Marlene and hosts Chuck and Di Cooper in a trip to Washington DC and Williamsburg VA. Lots of history again! Monuments. War memorials. Museums. Bus and boat tours of Washington. Visit to the National Zoo (think pandas).
The toughest cultural experience of the week was the girls’ request to visit the Holocaust Museum (in response to the ‘Facing History’ curriculum in middle school). The exhibits are sensorily intense. One cannot leave the museum without being moved. Horrified. Awed. Changed. The girls had nightmares. They talked about their families, and they revisited their own personal losses in greater depth the remainder of the week. Wow.
In Virginia, we enjoyed plenty of re-enactments of Revolutionary moments. Mark and Lesley (who work for the BBC) conducted an interview with Mr. Kelso, the archeologist in Jamestown who uncovered the remains of the original British colonial settlement (it celebrated its 400th anniversary last year). Sarah traveled with friend Michelle for the week of vacation, and they spent as much time in the hotel pools as they did seeing tourist attractions (smart girls, considering the hot and humid weather). We took part in ghost tours and a witch trial. Lots of excitement. History. Fun.
FAMILY: Next month, after Chris’s ride in the PMC, mom and Sarah will have a mother-daughter trip to New Jersey, Pennsylvania and Ohio to visit members of the family (some whom we haven’t seen since Jessie relapsed with leukemia, and some who have been born or adopted since that time).
TRANSFORMATIONS at HOME: How does the landscape change 9 months after a child dies inside the family and community?
Sarah misses her sister. And though she’s growing up, laying out her freshman high school class schedule with an eye toward college and medicine or science as a career, she’s also a young woman who misses her sister and doesn’t want every stuffed animal to be put away just yet. Like so many teens her age, she straddles the desire for independence and her ‘own life’ and her ‘own space’ with her closeness to her family and her last connections to childhood.
NEW MEMBER of the FAMILY: One interesting reaction to losing Jessie has been Sarah’s wish for companionship. She keenly misses her sister. She has asked for a new baby in the family (physically impossible, folks) or to adopt a child. Neither option makes sense in our current situation, as she spends a few final years with us before going off to college, and we try to find solid ground after the catastrophic events that have rocked our foundations over the past 6 years of living with childhood cancer.
Alternatively, she’d like a new pet. But we have a beloved and aging dog Lacey that needs attention right now. Realistically, we’re not ready for a puppy that Sarah will leave behind when she goes to school.
So how do we address her desire for companionship? For a sibling?
Well, we’re preparing to host a Belgian exchange student this winter. She’ll be our guest…we hope an extended member of our family…for six months. Her name is Tina and she’s 18. She’ll spend a post-senior year in high school, attending our local school and living with Rotary families.
WHAT HAPPENS to JESSIE’S ROOM? But where will our exchange student Tina stay in our house? Sarah told us. Sarah is moving permanently (we think) into her little sister Jessie’s room. And Tina will have the bedroom where Sarah has lived since we moved here.
Sounds simple, doesn’t it? Until you contemplate truly taking down and storing so many of the personal items that belonged to Jess. We had cleared the room out sufficiently to make it a guest room, while preserving her most precious items by wrapping them up. But right now the room remains distinctly Jessie’s, with its blue walls, its handprint quilt, it’s butterflies made by her classmates, its Boston Marathon medals and karate belts and its collection of shoes and Webkinz and dress up clothes and plastic horses and dollhouse and…
It has been comforting, to make the room accessible for play times and to make it welcoming for guests, but to be able to visit this room and know…Jessie spent time here. Now…now those details will find a new home. A new place to lodge. Sarah wants to protect her sister’s space, start over, and make room for a new person in the household, too.
This summer, we will move everything that belonged to Jessie out of the room. Perhaps up into the attic. And start over. We will move Sarah into a new space. And create a room for Tina.
We cannot begin to explain what a daunting and heart-in-the-throat task this will be. Positive in many ways. But also…exhausting. Sorrowful. Hard.
We aren’t going to put away all the reminders of Jessie. She is vibrant, all around us, all the time. And we will make a place for her. Always. Such as the bird-spaces in the garden out back. And in the continued display of her triumphs, such as her karate belts. But we are making space for new growth and life, too. A new place for Sarah to take root. A space for more love to enter our home, as Tina comes to stay for a while.
We continue to grow and change. We don’t leave Jessie behind. But we don’t stay in the same place, either. Time moves. And so do we.
There isn’t a map for this journey. Not a right way or a wrong way. Not a sure road or an easy path. There’s just whatever next step we can take. And the next and the next.
The journey continues.