“Life may not be the party we hoped for, but while we’re here we should dance.”
We’ve shared before about how this journey with HLHS thrusts us into ironies, dichotomies, and couplings of things one normally wouldn’t put together. On Saturday evening, this included the surreal experience of wearing black-tie attire in the PICU. Our dapper appearance strayed from the usual dress code of the parent tribe (jeans, sweats and t-shirts with unkempt hair and glazed over eyes). Dressing in the little PICU bathroom in Rudy’s room proved a challenge…the only full-length mirrors are inside of the elevator doors so we weren’t quite sure how “put together” we looked until we were on our way out the door.
What was the occasion? We were invited to attend Gala del Sol; a benefit for “Camp del Corazon”. Camp del Corazon is a camp founded by one of the cardiologists here at UCLA, Dr. Kevin Shannon, that provides year-round opportunities for children with heart disease. You may have heard of this camp if you’re an “ER” fan as it was highlighted in one of the last episodes in March. We first heard about the camp when nurse Fay popped into Rudy’s room back in October and told us to put the summer of 2015 on our calendar. When we asked why, she said “because that is when Rudy will be old enough to go to camp”. 🙂 Many of Rudy’s doctors and nurses donate their time staffing the camps each year. Only recently has it sunk in that Rudy’s condition will likely limit the things we’ll permit him to do in life. As much as we might want him to have adventures, realistically we’re not sure how comfortable we would be sending him some place without access to skilled medical care. Well imagine a camp staffed by the top nurses and cardiologists in the world–where no kid with heart disease has ever had to pay to attend. Where kids with limitations don’t sit out.
Saturday’s Gala was particularly special as our favorite surgeon, Dr. Brian, was recognized as the 2009 Medical Honoree. That alone was reason to be there. It’s not lost on us that we can say “this man saved our son’s life” without any tint of hyperbole. We were priviledged to be involved with Rudy in the tribute video and so thrilled to meet Brian and Noel’s extended family (who, we were humbled to learn, are followers of Rudy’s Beat). Originally, Rudy was supposed to be in attendance and we feared that his current setback would shelve that plan for all of us. But with Rudy’s condition improved yesterday, the docs and nurses back at the hospital encouraged us to attend. Rudy, after all, was in good hands. So, with the older kids settled at home in SB with one of their favorite friends (thanks Nina), with Rudy safe in the PICU with special company (thanks Pammy), we decked ourselves out in a tux and “little black dress” and headed off to Universal Studios for the big event.
We enjoyed the hospitality of Nurse Aliza and her family and were pleased to see Rayme and Brett (Logan’s mom and dad) again–who we haven’t seen since his discharge in November! Just as stunned as our doctor and nurse friends were to see us dressed to the nines, it was a change to see them in something other than scrubs and white coats. The evening gave a hopeful vision for Rudy’s future which served to renew our energy for the journey ahead. One of the most compelling moments was a camper video in which a precious 9 year old girl and her mother told of the 25 surgeries she’s had and how they live fully aware that life can be unexpectedly interrupted–or come to an abrupt end–because of her condition. It was impossible not to hold back the tears as the camera followed her dancing around the house with her sisters. Amidst the blond tresses flying about, she jumped close up to the camera and screamed out “I LOVE LIVING!!!!!”
We don’t often get to put on clothes like we did last night, but what stays with us is the new array of emotions that are becoming part of us: We wish HLHS never struck us, but we are so glad for these talented, loving guides. We wish our son didn’t have this limitation on his life, but we saw kids whose lives have fullness of their own unique kind. We don’t ever lose sight of the severity of Rudy’s condition, but see that life still holds grounds for celebration. It might not be the party we hoped for, but we’ll figure out how to dance here.