In Memorium

There is no footprint too small to leave an imprint on this world.

author unknown

Lelaina Jaymes Fitzsimons
2012 – 2017
“A Life Full of Love and Kindness”
An exuberant and inquisitive child, Lelaina Jaymes, “Laney”, spent the first 3 years and 9 months of her life seeing the world and taking in adventures big and small with her family and friends. Every day was a gift filled with joy and her smile and sweet voice melted the hearts of all around her.

Suddenly, in May 2016 with no prior signals of neurological disease, Laney started having mini-strokes due to an extremely rare and aggressive vascular condition affecting the brain. These were misdiagnosed as seizures and she was treated for epilepsy. Just two weeks after the first mini-stroke, Laney had her first of many massive strokes.

Later that winter, Laney suffered additional strokes while being transported to Boston for critical brain surgery. Her condition became terminal, and for the final months of her life, Laney was at home and surrounded by the love and affection of her parents.

Throughout the unspeakable pain and tragedy of these months, Laney continued to laugh, smile, and work to get better. Laney taught friends and strangers alike so much about life, love, perseverance, strength, heart, kindness and to never take things for granted.”

A few months after Laney passed away, her parents created the Laney Jaymes Foundation for Pediatric Stroke in her honor. The foundation is dedicated to expanding awareness of pediatric stroke as well as raising funds for the prevention and treatment of vascular diseases that cause pediatric stroke. Please visit the website to learn more about this special little girl’s life and how you can make a difference in Laney’s memory. They also have a Facebook page.

Breathe
A Eulogy Shared by Gabrielle’s Mother, Nikki Ide
2005-2010
I can’t begin to express my thanks to each of you for being here. The amount of love and support that has surrounded us over the past few days has been so beautiful – we are sincerely touched by your kindness. I am inspired every day by each of my children and I find so much joy from the way they challenge my perspectives on life.

I was hoping to share some of the profound moments on my relationship with Gabrielle because it feels like there were so many but when I sat to prepare her eulogy, I couldn’t find the words to express my thoughts.

So I took a moment to reflect on the memories of Gabrielle I have been hearing from all of you over the past few days and the memory that came to mind was her happiness.

Gabrielle was happy. She was always happy. So I hope you don’t mind if I take a moment to share my thoughts with you about her happiness and what it meant to me.

How often have you heard the statement: ‘all that matters is good health and happiness’? And how often have you just nodded in agreement without even considering the validity of this statement? Sounds logical – health is nice, happiness is important. But after Gabrielle came into my life, this statement puzzled me. What does it really mean? Does it mean that Gabrielle is less happy because she has health issues? If you don’t have health, does that mean you can’t be happy? And what is happiness anyway? Where does it come from and where is it felt in the body? How is it felt? How in my role as her mother can I influence happiness in her life? Is this possible?

But Health is not always a guarantee and sometimes it isn’t even a choice – like for Gabrielle, and she is certainly not alone.

You can see where I am going with this, right? A rather dismal rationale, don’t you think? Poor health, no choice, the existence of happiness being dependent on an uncontrollable variable…how could it be that ‘all that matters’ weighs so heavily on a variable that we often have very little control over?

Anyone who knew Gabrielle well, knew that she joined this life with her own agenda and timeline. There was no forcing Gabrielle to conform to anything unsuitable to her or to the world around her. This became even more obvious to me when Pink Floyd’s The Wall became our new ‘going to school’ song, I loved the irony. And despite all efforts and lessons on eating with a fork, Gabrielle made every meal a finger food. A partial explanation for her multicolored – and flavoured – clothing.

Despite a running agenda of clinic appointments, needles, poking and prodding, investigating her body for this and that, surgery after surgery, Gabrielle was happy. She accepted her body and made it work for her with grace and pride. Everyone she encountered was a friend who she loved. She loved expressing her love with generous hugs. There were no boundaries, limits or discrimination for her. Throughout her life experiences, she saw all sorts of people from all walks of life, ability, race, religion, gender and age. She loved everyone equally and wholeheartedly and I cherish that about her. Her happiness thrived on human diversity.

She loved jumping on her trampoline. She loved hunting for frogs, she loved singing and dancing, she loved painting, she loved yellow and rainbows, she loved making pompom animals and Caillou and Handy Manny and cashews and school. Gabrielle loved to steal my lunch bags and she loved to brush my hair. She loved playing with her brother and sister and cousins. She loved swinging in our backyard and picking vegetables from our garden. Gabrielle loved practicing riding her bike and she especially loved swimming. She loved honking the horn on the golf cart we rented in Disney World. She loved roasting marshmallows.

Mostly though, she loved people – her family and friends and future friends to be.

Gabrielle was happy – fully and completely. She found joy in everything she did, despite her health challenges. Gabrielle’s happiness was never dependent on the existence of an other factor – she was just happy because she could be. It was as simple as a choice.

I don’t know how I will ever be able to experience true happiness without her here – but I do know she would want me to and so I know it must possible. In her honor, I promise I will choose happiness along with my grief and sorrow.

When she passed away, I felt so empty and lost and alone wondering how I could ever live without her but as I reflect on her happiness and her unlimited and unconditional love and all that she taught me and how incredibly brilliant she was at bringing people together, I am feeling less scared about this journey.

You all had at least a moment to share in her happiness and you have all stopped your lives to come and love her as she moves on to another kind of journey and you have all loved me and my family unconditionally and shared in our sorrows. But I think Gabrielle brought us all together in this powerful way so we could choose happiness together too. I like to think of the power behind that possibility – all of us here in this room today, choosing happiness the way she did, whole heartedly and unconditionally and despite any struggle big or small and including everyone you meet without discrimination.

Thank you for always loving her and embracing her with such kindness.

Bella
2008 – 2011
“Making a Positive”
In honor of a little girl who lost her life to pediatric stroke, Isabella Paquette’s mom, Janelle, wrote this touching tribute and works every day to continue her daughter’s legacy by advocating for more research. Here is Bella’s story:

My daughter Bella Paquette suffered an Ischemic Stroke when she was only three years old. Bella caught a virus that caused massive brain swelling. That brain swelling caused seizures and pediatric strokes. We took her to a local ER where we were forced to wait hours for proper care, and the CT scan she received there was read incorrectly. The report stated she was neurologically fine. We are so thankful that the pediatrician on call went with his gut and did not agree with that assessment.

We were then taken via ambulance to Arkansas Children’s Hospital (ACH). They read that same CT scan and noted she had massive brain swelling, so much so that her plates had begun to come apart, and pediatric strokes. They immediately started a brain bolt to drain excess cerebrospinal fluid and a central line. After days of the sodium boluses, antibiotics, and antivirals her brain was still swelling. Furthermore, all of the testing they were doing was coming back negative. We had no idea what caused her high fever. lethargy, vomiting, and massive brain swelling. Her neurosurgeon decided it was time to try one last thing a Decompressive craniectomy. It is a procedure where they remove part of the skull to allow the brain to swell in hopes that it will prevent further damage. It didn’t work.

Her heart and kidneys started to fail, and her pupillary response was gone. We were not sure that she would make it through the night, and we didn’t want her to go without being surrounded be all of the people that she loves, and all of the ones who deeply love her. I painted her nails, we sang her songs, read her books, put on Dora, gave her a crown of flowers and ribbon that cascaded down her beautiful curly hair, and I got to crawl into bed and cuddle my best girl for the first time in seven days. She fought harder than anyone I have ever seen, and she is hands down the strongest person I know.

ACH is a wonderful hospital and my family and I are forever grateful for everything that they did to try and save Bella. It has been almost three years since my beautiful, kind, intelligent, and loving daughter entered Heaven. She is a hero. She is my hero. The kindness and love that she showed everyone she met inspired us to create The Bellaflies Foundation. Her foundation.

We raise pediatric stroke awareness, support children’s hospitals, and work to advance pediatric stroke research in medicine and testing worldwide. We are a 501(c)3 foundation. Bellaflies has donated $10k to ACH for a central nervous system infection protocol that if approved can go nationwide and save many lives, we are in the process of donating all of the proceeds from Strides for Strokes 2014 to Dr. Heather Fullerton’s research study Understanding Early Childhood Arterial Ischemic Stroke, and an annual pediatric stroke lecture series at Washington University put on by Brendon’s Smile.

Bella continues to have the ability to touch people’s lives and make them better, and that is a beautiful thing. I couldn’t be more proud of Bella and it is truly an honor for her to have called me “Mommy.”