I have been pleasantly surprised by the donations already given today for my Tour de Simcha ride. Those of you who donated, it means more to me personally than you may realize. It has been a tough week of constant traveling for Juliette's therapies and doctors appointments. Each time I receive an email alert about a donation, it makes me feel just a little more supported and loved. Yosef checks my fundraising page too and I know he feels the same way. I know everyone has their own personal reasons for why they choose to donate to one organization or another, so truly, thank you.
What is it like being Juliette's parent? Imagine watching and interacting with your child when they are sleeping and playing... and always feeling simultaneously an intense sense of joy and sadness, love and loss, happiness and fear. Imagine also constantly wondering how her big brother feels when he watches his baby sister sleep and play.
Caring for a child with complex medical and physical needs is difficult, both emotionally and physically. You want to provide the very best for them but it takes a toll. Over the course of the week that I registered for Tour De Simcha 2021, we drove about 320 miles to get Juliette to various doctors and therapists. As she gets older, her needs will progress and we know we will find ourselves traveling more frequently to specialists who are most familiar with her medical, neurological, and visual impairments.
How do we manage? Honestly, some days I don't know... But mostly we are able to make it work because of our amazing support system. Friends and family are a huge part of this support system, but they are not always able to provide what we need. This is where a community organization like Chai Lifeline comes in.
This summer, I am excited to once again take part in Tour de Simcha, an exhilarating 65-mile cycling event benefiting the children and families of Chai Lifeline. Every mile I ride and every dollar I raise will help support more than two-dozen essential programs for more than 5,900 children and families confronting pediatric illness, crisis, and loss. These services include counseling and case management, meals delivered to hospitals and homes, transportation to medical appointments, emergency financial assistance, insurance advocacy, i-Shine afterschool programming, Big Brothers/Sisters, Project Chai crisis intervention, and Camp Simcha and Camp Simcha Special, Chai Lifeline’s flagship medically-supervised summer programs.
Very soon after Juliette's birth, struggling to make sense of our reality of being a parent of a child with a congenital rare and potentially life threatening disease, I contacted then Tour de Simcha director Mindy Tyner. She put us in touch with a Chai Lifeline case manager who works closely with us whenever we need something. In the beginning as we puzzled through Juliette's diagnosis of Joubert Syndrome and meeting new doctors, Chai Lifeline scheduled appointments for us, organized transportation to doctors, and provided hospital meals. They also sent a volunteer to spend time with me and just chat, and delivered a box of toys to Juliette's big brother.
Thankfully things are stable at the moment, but we know that Chai Lifeline is just a phone call away from helping out with some of the toughest aspects of caring for Juliette, including providing support for us as parents as well as her brother.
Life for a child with cancer, disability, or other serious illness is grueling. From the moment of diagnosis, Chai Lifeline’s dedicated staff and volunteers are there to provide joy, hope, and unparalleled care throughout the turbulent medical journey.
My objective is to raise $5,000, and I hope you will help me reach this goal. All donations are 100% tax-deductible.
Please contribute generously to this important cause by clicking on the donate button now.
On behalf of the children of Chai Lifeline and Team Juliette, thank you for your support.