At 11 years old, my daughter, Sarah, was diagnosed with Marfan Syndrome, a genetic connective tissue disorder. Because connective tissue holds nearly all the body’s cells, organs and tissue together, Marfan impacts various aspects of Sarah’s health. One of the main effects of Marfan is Sarah’s scoliosis, or curvature of the spine, which is severe. When Sarah was 16, we opted for scoliosis surgery to help straighten her spine and help her live a healthy life as she ages. Left untreated, scoliosis often becomes debilitating.
Since Sarah was still young, and because we had a 14- and an 11-year-old at home, my husband and I rotated between caretaking and staying at RMHC. We stayed at the Westmoreland House for several days and nights during Sarah’s surgery and recovery, which took a total of about a week in the hospital.
Our first impression of the House was that it was lovely. It was up to date, clean and organized, with a friendly atmosphere. We were so fortunate to have the opportunity to stay there. We would have had nowhere to sleep and no place to call home base when taking care of Sarah while she was in the hospital.
There were all kinds of snacks and food available, and different volunteer groups to make meals. It was so nice to have a place close by that we could go and take a quick nap, get a snack or meal, or freshen up.
We live in Canandaigua, so it was nice being able to stay close by the hospital and not have to worry about driving back and forth. Since we had younger children at home, we would alternate—we wanted to spend as much time with our daughter as possible after her surgery.
The House provided a respite for us during a very stressful time in our lives. Sarah’s surgery lasted about six hours and she was in intensive care for a day or two. We needed our rest and a few moments alone to relax and practice selfcare before going back to the hospital or back home to take care of our other two children.
The staff was very helpful and provided everything we could have needed. They provided a friendly face at the end of the day and made the House even homier than we would have thought possible. We can’t thank the staff at RMHC enough—they were there when we needed them the most.
RMHC has a place in our hearts as a very supportive environment for families undergoing medical treatment. We are so happy that we had the opportunity to stay while Sarah was in the hospital. One of the hardest things as a parent is watching your child in pain. RMHC helped us through an incredibly tough time. They made a very difficult, stressful hospitalization easier to handle.