A Beautiful Life

Linda Marie (Leclair) Sousa

September 23,1972-July 3,2017

My beautiful, brilliant, sweet, loving, full of life, Soul Sister received her angel wings one month ago on the night of July 3rd with fireworks exploding in the background.

Victor and I thought it was important to post news of Linda’s passing on her blog.  During the past few months, Linda hoped she would be well enough to update everyone in her own words, but she did not get that chance. Unlike Linda, sharing feelings does not come easily to me. I want everyone to know that Linda was a Rock Star long before her illness. She was extraordinary her whole life- those close to her already know this. I refuse to allow Stupid Cancer to take credit for anything good that Linda was.  She was inspirational, strong, kind, insightful, positive, and graceful long before December 2011. Linda spent over three decades filling my bucket. Since we were young girls, whenever I was feeling lost, I could count on Linda to point me in the right direction.  Although she is three weeks younger than me, I have always and will always look up to her.

As we struggle to learn to live life without Linda, knowing that she touched so many lives is a large source of comfort. Thank you to everyone who has reached out to Linda’s family and mine. To honor her, I have humbly attempted to give a glimpse of Linda's beautiful heart from my perspective.

“With life as short as a half taken breath, don’t plant anything but love.”

           ~ Rumi

Linda began her life’s journey cherished, protected, and loved by her wonderful family.  She left this Earth with a full and grateful heart, humbly understanding that during her 44 years, she had made a beautiful imprint on more lives than she would ever come to know.  To feel love and to give love was most important in her life.  If measured in love, not in years, Linda led the fullest of lives.

Linda planted love passionately.

Linda loved teaching and became a very well respected and admired educator amongst her colleagues.  She was a fierce advocate for her students.  When Linda’s health forced her to retire from the job she dreamed of as a child, she continued to teach on an even larger scale.  Linda taught us all what courage looks like; what bravery sounds like; what strength feels like.  Linda showed us how to be fully alive in the wake of physical limitations.  Her example of moving forward with happiness, hope, grace, and purpose continues to inspire others to live better lives.

Linda loved to give.  She was always thinking of how to make others happy through her personal touch.  She had a talent for recognizing what others would like and creating her own gifts filled with her special magic.  Linda understood that gifts do not need to be expensive or fancy to touch people’s hearts. It was typical for Linda to bring flowers from her garden in a simple glass jar with a pretty ribbon and hand written tag, to cookouts, parties, or just because. Her hands were always moving. More than once, Linda would put together a special gift for me, right in front of my eyes, without me even knowing it.  Long ago, I stopped asking what she was up to when she was creating. My home and my studio are filled with special, meaningful (many handmade) gifts from Linda. I will treasure every one of them…always.

 

Linda loved photography.  Her unique perspective behind the lens captured nature’s beauty and life’s precious moments.  She preferred candids over posed photos and always caught genuine moments of loved ones and friends.  Family and friends could count on Linda to have her camera at every special event. Others recognized and admired Linda’s talent. She was often asked to photograph weddings, family photos, and other occasions. Lin and Vic’s home is filled with her beautiful photography. Even before she became ill, Linda was aware that every day was a gift.  You can see how she cherished every precious moment through her beautiful photographs.

 

Linda loved nature.  She and Victor spent two decades tending to their beautiful gardens.  Many of their plants, flowers, and shrubs came from the yards of her grandparents or other relatives.  Linda found solace on her front porch where she enjoyed watching birds nest in her hanging plants and following butterflies as they fluttered through her flowers.  She loved the change of the seasons and all of nature’s beauty.

 

Linda loved to go for walks outside with her children, her parents, and her friends.  She enjoyed the fresh air, conversation, and scenes from nature. Walks served as a good stress reliever for her. Linda and I walked together nearly every day for years...sometimes before the sun came up, sometimes very late at night, during snowstorms and rainstorms, sometimes running to prepare for 5Ks she was determined to do, and sometimes holding on to each other for support through life’s darkest times.

 

 

 

Linda loved old things. Antiquing with her mom was one of her favorite things to do. Linda spent years collecting, refurbishing and re-purposing treasures she received from her grandparents or even old gems she found on the side of the road.  She could make a rusty box, a broken ladder, or an old wheelbarrow look like a piece of art.

 

Linda loved her home.  She and Victor built a home filled deeply with love, history, and meaning.  Their home is a masterpiece of warmth and beauty where every corner is filled with Linda’s personal touch.  Linda and Victor made an awesome team. Linda had clever, creative ideas and Victor’s handiness helped make them happen.

Linda loved to write. Shy by nature, Linda bravely shared herself through written language.  She touched countless people through her blog.  She inspired many by exposing her vulnerability in hopes to help others.  She found her blog to be therapeutic as it served as an outlet for her feelings.  Her genuine thoughts are now a precious gift left to her children in her own words.

 

Linda loved music. She loved anything from John Denver to gospel to Sara Bareilles. Sometimes music gave her extra pep in her day and sometimes it helped ease her mind. Her music served as a source of comfort on stressful trips to Dana Farber. Although Linda was not a dancer, she had an ear like a choreographer. My iPod is full of music that Linda would send me for choreography ideas. She always felt proud when I used her suggestions for special pieces.

 

Linda loved God and her church, where generations of her family have gathered to pray, celebrate, and grieve.  Linda, Victor, and the kids attended weekly mass where she found comfort and peace.

Linda loved her friends.  She held her friends close, enjoyed their company, and kept them dear to her heart.  A number of times, Linda expressed to me that until she got sick, she never realized just how many people considered her a friend. She was very touched by the overwhelming support of all of her friends.  The love of Linda's friends helped to lift her in very tough times.

Most of all, Linda loved her family.  Family gatherings with her grandparents, aunts, uncles, and cousins were the highlights of her childhood.  Linda had a strong sense of where she came from and spoke often of her Memere and Pepere Tetreault and Memere and Pepere LeClair.  Linda had the fondest memories of family vacations to places like Maine and Disney.  As an adult, Linda opened up her home to be the common gathering place for her family. She and Vic hosted cousins, aunts and uncles and other extended family for holidays, birthdays, and summer cookouts.  Linda was fortunate to have a large family that expressed to her how much she meant to them. We often talked about what a blessing it is to know how loved you are.  Linda was very aware of the gift of her family.

Linda loved Victor’s family.  Sunday family dinners were filled with food, drink, laughter, and love.  She respected their strong sense of family and felt honored to be a part of it.  Linda hoped to someday travel to Portugal to meet Victor’s relatives and see where he was born.

Linda loved her nephews.  She embraced each one of them with wonder and joy as they entered the world and then celebrated every milestone with them since.  She made time out of her busy life for them and planned fun, special things to do with them.  There were always fun things to do at Auntie Linda’s house.

Linda loved me and my family.  Not only have Linda and I been through quite a lot together, but our families have as well. Linda often commented that our children acted more like siblings than friends. Long before boyfriends, husbands, children, and selfies, Linda and I began to develop a bond that would grow into something truly beautiful and rare.  Our hearts are connected in a way that I cannot put into words.  We understood each other without the need for language. A few years ago Linda decided that “BFF” was not enough to describe us and she started to call us “Soul Sisters”... I am profoundly grateful for the time we shared here on Earth and I pray that her beautiful soul will be eternally connected with mine.

 

Linda loved being a big sister to her brothers Ron and Jeff.  She was wildly protective of them and was their confidant, adviser and loving friend. Linda thought the world of her brothers and always kept a special place in her heart for them.  Linda was proud of the men they have become and spoke fondly of them to others. She prayed for their happiness and was thankful that Jeff has Michelle and Ronnie has his three boys.

 

 

Linda loved her parents Ron and Jan.  Jan was Linda’s best friend, confidant, and biggest ally.  Linda was painfully shy as a child and often had trouble separating from her mother.  Even as an adult, Linda felt most secure when her mom was nearby.  Linda absolutely adored her father.  At 44 years old, Linda was still very much Daddy’s little girl.  Linda's parents moved into the house next door (which they own) less than a month before she passed. Linda's face lit up anytime her parents’ new living situation was mentioned. She found peace knowing that her mom and dad would now be so close to her and her family. Linda knew that she had the most amazing, wonderful parents. She was beyond grateful for her happy childhood and all the love and support that she had received from her mom and dad for her entire life.

 

 

Linda loved being a mom.  She entered motherhood through much heartache and struggle.  She understood that often times, out of our greatest struggle comes our largest rewards.  Evan and Kaia were by far the largest rewards in Linda’s life.  She selflessly gave her children all of herself.  Linda was profoundly thankful to Evan and Kaia’s birthparents.  Linda understood that through their sacrifice came the greatest gifts that Linda would ever receive.  Linda was immensely proud of E and Little Miss for the bright, beautiful, loving children that they are.  God made Linda the perfect momma for E and Little Miss.

Linda loved her Victor.  He was her rock, her light and her love.  Linda’s love for Victor stood the test of the hardest of times.  During their nearly 21 years of marriage, Victor filled Linda’s heart and gave her closeness, comfort, and security only his love could provide. Despite hardship that no young couple should ever have to endure, Linda and Victor had a happy joyous life filled with much laughter and love.

Linda’s greatest legacy is the lives she touched with her loving, giving heart.  The ripples of her profound influence on others is infinite.  Linda left the Earthly world feeling loved, making others feel loved, and understanding that she made a meaningful, beautiful difference.

"There are those rare moments in life when you are touched by so much love that you begin to realize how beautiful life really is."

~Unknown

100% Loved...

It's been a while since I have connected with my blog readers.  So today seems like a good day to do so. 

It's hard to believe our Little Miss just celebrated her tenth birthday. She's pretty fantastic, creative, sensitive, intuitive and overall beautiful. We feel blessed each and every day to have her  as part of our family. And then there's E who is now officially a teenager...UGH! He too, is full of great qualities and is growing more mature each day. 

Having two children with recent birthdays definitely makes me extra sensitive. Singing "Happy Birthday" just brings the reality of my illness to the core and I can't help but work extra hard to have faith that I'll have many more celebrations to be a part of.

It's not always easy to be Little Miss or E these days. The Momma they have currently has her own challenges and struggles in life and it is certainly not the same one they had in their younger years. She lacks energy and drive and relies on others to keep her and her family afloat. Just as it's hard for me to depend on others to help me; I know it's difficult for my children to do the same.  

I'm asked on a regular basis how I am doing.  I generally pause and say, I'm doing ok at the moment. Then there are times when I'm not feeling great at all and I say "I'm not doing so great." The not so great days may consist of small seizures which are body parts going numb for short periods of time or very blurry vision. This is not too alarming to the brain doctor, but for me it's disturbing. I become unsteady, somewhat panicked  and unsettled. For the past week I've also felt a bit nauseous and bloated. 

I share this with you because I want you to be comfortable checking in with how I'm doing. I also want you to be ok with the response I give.  I want you to have faith but not sympathy for me. My entire family is learning on a a daily basis, maybe not how we'd like to, but we are a stronger as individuals and as a family because of this miserable yuck.

I was finding myself answering with I'm doing fine or I'm doing ok....and after a while, it wasn't making sense because that wasn't entirely true.  Now you may even get some "I feel like shit" some days.  I'm not going to try present myself as something I'm not. I'm a human with Metastatic Cancer. Some days I have energy to go for walks and play games with my kids and some days I'm barely able to rise up from the couch. 

I do the best I can each day with the support of those WHO love me. 

I think checking in on people and seeing how they are doing is a loving and kind gesture. Although the responses are not always positive and they can be scary, it is the truth and it can show first hand how strong LOVE it.

The biggest blessing...LOVE

E asked if he could read my blog the other day, I thought it would be a better idea for him to help me write a post.  Surprisingly he agreed. As we all know, it's not always easy to express our feelings and talk about hard things, but I couldn't be prouder of his willingness to talk with bravery and honesty.

He told me to ask him questions and he'd answer them. 

What kind of feelings do you experience as a child of someone with cancer?

Sadness, anger and discomfort, especially when my parents are not home because I get nervous about what's going on. 

What is the best way for you to handle these feelings?

I  feel comfortable asking questions to close family members, especially my mom in my case. Sometimes I get angry at my loved ones and the way their schedules have changed, but you have to support them.  

What are some other ways you could deal with the situation?

If you feel uncomfortable you could always read kids books about parents who have Cancer.  My favorites are "The Cancer that Wouldn't Go Away" by Hadassa Field and "When Someone You Love Has Cancer" by Alaric Lewis (Click on the titles to connect directly to Amazon).

There are many ways I help my mom, such as chores and lifting heavy things. It may seem like I'm doing more work around the house but really, I'm just helping my mom. 

Sometimes my mom having Cancer is very hard because I think about her dying.  She had it before and she said it would go away. When she and my dad told me it was back, it was the worst day of my life. It's still so hard but I distract myself by playing video games, reading books and playing board games. 

It's always ok to express your feelings, and sometimes you may even cry; that's ok too.

And don't think that just because they have Cancer, they can't have fun and still do things with you. My mom and I like to go on walks and this is a way we can talk about things. 

Thank you for listening, E.

Remembering back to the day we told E I had Cancer again was so painful. How do you even begin to explain such yuck?! The honesty of it hurts.

The hardest part of this disease continues to be the uncertainty of it all and how it affects all my loved ones, especially my children. We are all learning to be present in the current moment.  We can't predict the future but we can live our fullest life each and every day. Our greatest blessing is being able to lean on and love one another without knowing completely what tomorrow brings. 

Faith over Worry

It's been just about two weeks since my 5 day visit to the hospital.  The thing about this Big C yuck is that things are constantly changing, and ridiculous and unpleasant side effects are a daily nuisance. 

Due to lower white blood cell counts, I'm more susceptible to illnesses, viruses, infections and all sorts of other stuff. This month has been very unpleasant with rashes, exhaustion and infection. I ended up with an extremely painful bacterial infection in my mouth and throat, causing sores. I tried to take care of it at home with medications, but it became evident when I couldn't eat or drink without extreme pain that I needed to visit the hospital. Once there, IVs and strong meds helped and 5 days later I left pretty much pain free.  Although I still have some side effects lingering, things are much better. I'm very grateful to have resources to go to when things at home are not working. I'm also grateful once again to have the support of so many. My soul sister and I had sleepovers and hubby came to visit multiple times, while my parents took care of my two loves, E and Little Miss, at home. 

Staying in the hospital for any length of time is not exactly pleasant.  In fact, it sounds grim, but leaving to go there, I wondered if I would be able to return home. The fact that I have a terminal illness never leaves my thoughts. The constant worry when you have Metastatic Cancer is difficult to overcome and being in a hospital 24/7 feeling terrible made it even harder. It's a constant challenge to remain positive and keep the faith. 

This is when it's so important to take each moment one at a time while doing your best to keep the Faith. The Team I have cheering me on definitely helps to keep me grounded and for that, I thank all of you for your consistent love and support.  I feel loved and blessed on a daily basis.

My main reason for writing this post is to explain once again that I often feel like I have no idea what I'm doing and if what I'm doing is actually helping me to feel well. This Big C thing is so exhausting, both physically and emotionally. Although I'm trying my best to keep the faith, I do not have it perfected. I worry... a lot. I'm generally happy and you may see me smiling in most pictures, but remember, that's the highlight reel. Behind the scenes, there is often exhaustion, anger, frustration and weepiness. But somehow, my highlight reel continues to outweigh the yuck the Big C brings into my life even though some days are a struggle. 

Fighting Hard...

On January 25, 2017,  I posted this on Facebook "today I'm thankful for chemo. And I'm grateful for all of you. My CT scans showed shrinkage...whoop, whoop!" Sorry to those of you who follow this blog and not Facebook. I didn't mean to leave you hanging. 

It's been a while since I've had a good report from scans. So long, that when the oncologist told us, I think we all stared blankly at her and almost didn't know how to react. Shrinkage...the little f----ers shrunk? Whoop whoop!

 For now we will continue using the same tool from the toolbox and keep hope that it continues to be effective. During my visit I got my infusion of chemo and here we are about two weeks later dealing with the side effects most people don't see or hear about.  Truthfully, I've been struggling with feeling good and dealing with yuck. I shed tears almost everyday because I'm so exhausted and tired of the Big C.  Mentally and physically it can be a struggle.  Don't feel bad for me, just know that this is often the reality of those of us with MBC. Maybe it's not visible from the outside, but the nausea, exhaustion, anxiety, seizures and so many other things are behind that seemingly average looking person who has a body full of cancer cells.  We have various side effects that often seem to take over, but most of us are willing to play on and take the good with the bad. Thanks to our support systems we are also able to continue fighting hard. 
  

 I'm hoping that tomorrow is the day things will turn the corner. It's a struggle, but one I'm determined to fight and conquer. 

In the meantime, my E is now a teenager. 

It's so hard to believe that it's been so long since I answered that phone call saying he had entered the world. We celebrated his birthday with family and he enjoyed some of his favorite people. Although his spirit often challenges us as parents, he is truly a sensitive and kind little boy and works hard helping his Momma these days. I love him more than I can possibly express.

Little Miss had her Red and White School Dance. This was her last dance at the elementary school. 

Today and tomorrow we are enjoying our first official snow days of the season. I'm hoping the kiddos will enjoy sledding. They need some fresh air and time away from SCREENS.

Living with challenges...

I sit here in front of my computer screen and STARE, not really sure what to say. Tomorrow, I go for the results of the rest of my scans. The different scenarios of what could be the outcome of Monday's scans and tomorrow's blood tests occupy my mind. I try to remain positive and hopeful, but also know that things don't always work out that way. What I am hoping for is a continuation of last week's brain scan where things appeared to be stable. 

The most recent way I try to handle things is to take what I'm given, ask the questions I need to, fight for what I think will be the best treatment and carry on as best I can. This is typically how I have tried to handle things from the beginning. Now I think I'm just becoming confident enough to challenge the thoughts of the doctor while trying to incorporate all those working with me to give me my best life. 

This job is a daily challenge, from waking up in the morning to going to bed in the evening, and everything in between. I'm exhausted most of the time and feel like I could sleep 24/7. I'm not driving, but I have to coordinate the daily rides my children need to get to their activities. I'm blessed to have so many willing to help us out. For those Metastatic Fighters who are still working in paid positions, you are amazing. I can only imagine how difficult it is most days and I think it should be a requirement for you to have a comfortable resting place when you need it.  Keep up the fight,  fellow warriors! We're all in this together, in one way or another.