Arriving at Dayton Children’s Hospital
The first few weeks after the diagnosis I fell into a deep depression full of ruminating thoughts of when the day might come that I won’t have my beautiful boys anymore. A year? Two years? Ten? Twenty? I was constantly in tears. How could I live, knowing my children are dying. A few weeks in, I decided I couldn’t go on like this anymore. My children deserved much more than the broken person I was, they deserved a better mother. The only way I could cope with the diagnosis was to live day by day. Some days, are harder and need to be taken hour by hour…
For the past three and a half years, I’ve pushed any thoughts of tomorrow from my mind. I’m terrified that thinking of the future will shatter all the pieces of myself I’ve been holding together. Living day by day, means finding the beauty while sitting on the porch at dusk. Or taking a moment before putting the kids down for a nap, to enjoy the smell of their hair or the way they feel in my arms. It’s taught me to appreciate each moment we have. Making the mundane special, and focusing on enjoying each moment because that is the only moment that I know we have together for sure. Our future together isn’t a given. It’s taken a lot of work and focus to live in the now, and only the now, and my life is richer for it. It’s a beautiful skill to have mastered, but it’s an exhausting one to never be able to turn off.
Tonight, Gary and I talked about what having this procedure all could mean, and I could feel for the first time, in a long time, my guard slowly lifting. “Tomorrow” has been the terrifying unknown for so long, but for the first time, in what feels like forever, I’m looking forward to our tomorrow. Because today, we have hope. With Gods help, Benny will be having brain surgery, to deliver the gene therapy to treat his Canavan Disease. We will be arriving at the hospital at 6:30am EST, after anesthesia and an MRI he will be transferred to the OR for surgery around 9am EST. Please have him in your prayers and thoughts for a smooth and successful procedure.
Lots of Love from,
Jennie and Gary, Michael, Benny, Josh, Evan and Raqueli
The boys and their Hebrew names as follows:
Shalom Binyamin & Yehoshua Natan, ben Shayna Toyba
שלום בנימין בן שיינע טייבע ויהושע נתן בן שיינע טייבע
Cure Canavan Fund is a registered non-profit 501C3. Donations to Cure Canavan Fund are tax-deductible. EIN# 83-4489648
Benny smiling through one of his many pre op tests
Benny meeting the Pediatric ICU’s staff “Dogtor”