The Families

Since 2006 when my first brain aneurysm ruptured, Dave and I have come in contact with hundreds of families effected by brain aneurysms not only in Maine but throughout the country. Although some friendships and communications have varied in frequency as they have weaved their way through our lives over the years, their stories remain with us.

We shared last nights annual Dance for Brain Aneurysm Awareness fundraising event with many of those families. Today, I am reflecting on just how vast the brain aneurysm community is. Not only do Dave and I have contact with survivors and those who have lost a loved one, but we have met and become involved in the lives of their family members as well.

Learning how brain aneurysms effect an entire family is a part of OUR lives through the work we do with our group and each story effects us.

Last night I danced for the first time with a fellow survivor we’ve known for several years. He is a walking miracle. His recovery from a severe brain aneurysm rupture is remarkable. Learning to walk again, overcoming dramatic emotional struggles, and a memory pathway that is forever changed. I’m pretty sure I never stopped smiling while dancing with Dan for many reasons: he is a survivor, he is a fantastic dancer, and we have gotten to know his wife and young children. We know his life now. He is a part of our extended brain aneurysm family.

Everyone’s struggle is different, but the cause is not. Brain aneurysms can rip a family apart or bring it closer together. Dave and I have experienced both of those results with many of the people we have met and as a result we also begin to care and worry about their family members. We now know their children, their siblings, their grandchildren, their parents, their co-workers, and even their pets.

Some people have a massive amount of support from family and friends while other’s are not as fortunate. We hope those who don’t have that larger support system feel a sense of community and encouragement when spending time with others at our events. It’s vital we show them they’re not alone in their struggles.

With relatively new “family” member and brain aneurysm survivor, Carol.

The date of our annual Dance for Awareness is not by accident. The birthdays of two young women lost to ruptured brain aneurysms fall around this time: Kim Tudor, Dave’s niece, and Karolina Kurka.

Karolina’s family, during a time of intense grieving, came to our walk only a few weeks after losing Karolina. Since then, their family has joined ours in raising awareness and bringing their friends and extended family into the fold.

Each year after the dance, a small, solemn, informal ceremony takes places outside in the parking lot. A release of balloons, in the colors we use to represent Kim and Karolina, are released to the night sky into the heavens to honor them both on their birthdays. Some years it’s a small group, other years, it’s a larger group, but it’s always meaningful to the family and friends of these two young girls taken far too soon. This year, Kim’s mom Nancy, and Karo’s mom Mira, released the balloons.

One shouldn’t be afraid to celebrate the lives of those lost. It is very easy to let the tragedy and grief of their deaths overshadow the joy of the years we DID have with them.

I thank all of the families of those we have met over the years for inadvertently reminding me that it’s okay to remember the family members I have lost. It’s okay to celebrate their lives through OUR lives and it’s okay to allow someone else to love you and support you. THANK YOU!

Heartfelt Love and Support

Dave and I had dinner in Gorham, Maine tonight. Why would we drive and hour and a half just for dinner? Here is why.

A friend and former member of the Maine Brain Aneurysm Awareness Committee was in need of support. Her parents, husband, and children needed to feel the love of family and friends.

Jess joined the committed after losing her best friend, Karolina Kurka to a ruptured brain aneurysm. The annual Karo-5k was named in Karolina’s honor and Jess was a huge advocate for raising brain aneurysm awareness and making sure Karolina’s memory lived on.

It was also through this awful loss that Jessica became educated about brain aneurysms and the importance of getting yourself to a hospital for a scan if you’re having issues. It was due to Karolina, that Jessica went to the doctor after suffering severe headaches.

In 2012, thinking she could possibly have a brain aneurysm herself, Jessica and her young family were instead stunned to learn she was diagnosed with astrocytoma, an aggressive brain tumor/cancer. The tumor was surgically removed at Maine Medical Center by Dr. Florman, one of the two surgeons who assisted with my own craniotomy and brain aneurysm clipping in 2014.

After successful recovery and treatment, Jessica continued to thrive and enjoy life with her husband and two young sons until five year’s later in December of 2017, her tumor/cancer returned.

In early 2018 the new tumor was removed surgically and she endured 30 radiation treatments and chemotherapy.

In May, an MRI revealed the tumor had grown back and although it was not curable, it was treatable.

In June, Jessica celebrated her 34th birthday and in July, Jessica had her head shaved. Her mother, in a touching show of solidarity, shaved her’s as well. 

Dave and I joined their family here in Augusta for the Bob Burn’s Memorial 5k/Walk for Brain Tumors where it was wonderful to give her a hug and show our support.

In August another MRI revealed a 2nd tumor had developed in an area in the back of the brain that effects balance and movement. Devastating news and new immunotherapy radiation was scheduled.

And then a follow up MRI in October showed more tumor growth and their family made the heartbreaking decision to cease further treatment. 

Tonight Dave and I attended a fundraiser in Gorham for the family. It was wonderful to see such a large turnout at the elementary school to lend their support both monetarily and emotionally. Children playing, people laughing and LIFE. 

Jess is struggling, but doing amazingly well considering everything that she has had to endure.  It’s very difficult to know what to say. I did tell her we loved her. I hope that is enough to give her some comfort. I can’t imagine the overwhelming feelings she and her family must be enduring right now. Especially during the holidays.

You are BRAVE Jessica. You are LOVED.

I wish this wasn’t happening to your family, but I DO know you’ve shown us all how to endure. Your strength and bravery will guide your sons going forward. Let the love and support you’re being shown right now give you comfort and strength. We love you.

Paws to Pause

For many who attended our 10th annual KAT-Walk for Brain Aneurysm Awareness yesterday, they probably did not catch the significance of a special moment for our family personally.

Because this was the 10th anniversary of the KAT-Walk named in honor of Kim, Dave’s niece who died from a ruptured brain aneursym, there were some special moments dedicated to Kim’s memory yesterday. One of those moments was the start of the walk.

The start of the FIRST KAT-Walk in 2009 was lead by Dave, myself, Kim’s mom Nancy, and Kim’s pug, Bella. Bella has been there to lead every KAT-Walk since Kim’s death, except yesterday because she passed away earlier this year after a long battle with illness.

Bella the dog leading the 2009 KAT-Walk
Bella leading the 2009 KAT-Walk

A month ago, our brain aneurysm group was lucky enough to be a featured community organization at a Portland Sea Dog’s game. The Sea Dogs are a double-A minor league team for the Boston Red Sox. As a part of our efforts that night, we had asked if their mascot, Slugger the Dog, could attend our KAT-Walk & Karo-5k to add some special local flavor.

Slugger showed up and had a lot of fun with those in attendance. Earlier in the week, I had suggested we start the walk with Slugger taking the place of Bella since it was the 10th year of the walk. Dave thought it was a great idea and Slugger helped Nancy and I hold the original banner created by Dave for the first KAT-Walk to start the walk.

2018 for website - 001

Carrying that banner with Nancy was sad, but also a proud moment because of the work we have done in Kim’s name and for those touched by brain aneurysms.

Times are changing.  People move away. Pets pass away. Our committe members are getting older. It gets more difficult to find willing, and physically able volunteers each year to produce the kind of event we want to provide the brain aneurysm community. But the hard work is worth it when hundreds of people show up to support each other and our efforts to raise awareness.

THANK YOU to everyone who attended and/or donated this year. We could not do it without YOU! And thank you to Slugger and the Portland Sea Dogs, for providing some comedic relief and a helping paw in a special moment.

 

Ghosts From The Past

At work today, as we were discussing a return of flower bulbs to the catalog, we were looking at older catalogs when we sold bulbs previously. For about three or four years we sold Narcissus and Tulips. As I was looking through one of the older catalogs, I noticed a major typo! The word Narcissus, was spell with an “M”!

5094FE0A-6685-4603-BB20-97A2E51A76ED
Marcissus (oops!)

My first thought was embarrassment because I would have been the one who typed that and then I was laughing because…well, it was funny! Obviously our copywriter/editor/proofreader extraordinaire missed it, and probably many others did too. A group effort!

Then I realized the year of that particular catalog – 2007. Which means I was producing it in 2006. Which means, that’s the catalog I wasn’t able to complete because I had my ruptured brain aneurysm in October of that year.

It was NOT easy for those left behind to complete the catalog that year. They did bring another graphic artist in, but it must have been horribly difficult for her to pick up where I left off and not know how I pulled in information from our database, nor any of the processes, or where I had left off.  I seem to remember I was able to tell my husband to tell them a few things, but beyond that, they were on their own.

Seeing this typo brought back a lot of memories of that period and also of Jeanne, our proofreader. She was brilliant at her job and worked tirelessly to make sure the information that went out of the building to customers was accurate. So, seeing this typo, I wanted to contact her immediately, because I know she would have felt the same way about it as I did.

Heidi & Jeanne (left to right)

Sadly, I’m unable to contact her because she passed away almost two months ago from cancer. Even though she retired two years ago, I always knew I could reach out to her and she’d understand. I also know she’d be some pissed that this typo went out to customers, but she would have also stated that it was a stressful time for everyone while I was out and that “shit happens”.  Yes, it does…so I look upon this little typo as a badge of honor. Jeanne and I BOTH survived that catalog season. Marcissus be damned.  You can be sure in this, my 17th year of catalog design, I’ll spell it correctly!