We planned this for months. The girls saved and hung a paper chain countdown. Of course, like most of us affected by disability, we are prepared to make a change of plans. History has taught us to expect the need for flexibility. I do my best to be proactive in anticipating hiccups, and work to minimize them as much as possible. I just didn’t expect this. If you know me personally, you know that after we landed in Texas I received word that my brother unexpectedly passed away while we were en route. Honestly, I don’t even remember how we got our rental van and arrived at the hotel. I was too shocked and busy processing that news. I was also doing google searches for flights back home and researching the cancellation policies of our hotels. By the next day family suggested we stay and come home as planned as they would take their time with planning. In some ways I hated staying and in some ways I was relieved not to deal with making travel changes on a holiday weekend. A backwards Texas waffle We were already tired when we left. Well, more than our normal Continue Reading
Archives for 2019
Adapted Serenity prayer
Something tells me I will be revisiting this prayer often! Continue Reading
Sorrow and Love Mingled
Sometimes when I ask my daughter a question about how she feels about something she will reply “Both”. I don’t remember when she started using that word as an answer, but I do recall that I understood her sentiment immediately. It became her way of saying that she had mixed feelings...that the answer wasn’t so black and white. She could have feelings both positive and negative at the same time. Perhaps this explains why I can’t seem to get past the lyrics from “When I survey the wondrous cross” that we sang during Palm Sunday service. The Mingled feelings of love and sorrow. It seems like a life theme...especially when journeying with disabilities. Yesterday, as I watched the Notre Dame cathedral fire, I was reminded of the day I began to finally understand how two opposite feelings can live together in my heart. Specifically Joy and Suffering. It was on September 11 as I watched the twin towers burn and fall. Everything felt eerie and I was already overwhelmed caring for twin babies with cerebral palsy, but I wasn’t scared. I realized then that the difficult, sometimes Continue Reading
Why we drive almost 5 hours for adaptive skiing
People always ask me why we drive about five hours to Lake George NY for adaptive skiing at Double H ranch. After all, it’s less than two hours to the Pocono mountains for us. This is it, right here: We have had more changes than I can count over the past few years... No sooner did we move to a one floor home and auction off my parents’ home and household items than we found each of our oldest two graduated college and our twins graduated high school. The eldest married, our goddaughter married, GRAMMY married (crazy kids💁♀️) and now our middle daughter is engaged to be married shortly. We have sought a new primary care doctor and left the pediatricians. Currently we’re researching the ideal medical center to oversee their care as adults. Visits to numerous post high school day programs and habilitation opportunities are our new pastime as our time in the educational system comes to a close. We continue to desperately work to understand the social security system, waiver system and all the forms and paperwork that go with them. As a result, we attend Continue Reading
Tips to Access the Arden Theater in Philadelphia
Arden Theater As I mentioned in a previous post, The Art Reach Philadelphia Access program has added theaters and we are excited! You will find the Arden Theater in historic Old City Philadelphia. The Arden Theater is located at 40 N. 2nd Street, between Market and Arch Streets in Old City Philadelphia. They are immediately next to historic Christ Church and half a block north of the Market-Frankford Line’s 2nd Street stop, if public transportation is more convenient for you. Unfortunately, we struggled with parking the day we visited. There was a play in the early afternoon, ours was late afternoon. Because of this, the parking was beyond filled and somewhat chaotic. Staff inside suggested we hang out until the first show ended and the lots emptied a bit. We chose to unload at the corner and my husband drove around until he convinced the lot attendant that he was supposed to fit in their lot, as advised by staff inside the theater. It was frustrating for him. Next time we attend, we will use a parking app to find a local lot. Arden Theater Neighborhood View Continue Reading
DAFOs for Dolls free for Cascade customers
I wish I had know this before! Thanks to a mom looking for matching orthotics for her daughter's Christmas gift doll, Cascade brand orthotics is offering FREE doll DAFOS to their customers! We understand that sticking to a brace-wearing plan can be challenging for kids, but having a look-alike companion who shares your daily routine can be a game-changer. We're happy to announce that our shelves are now stocked with mini-DAFOs that fit most 18-inch dolls. Our complimentary Doll DAFOs can be ordered with any of our strap colors. (Available in the U.S. and Canada, for Cascade Dafo customers only.) https://cascadedafo.com/news/2018/exclusively-for-dafo-wearers-doll-dafos In other words, you can choose the strap color to match your child's DAFOs! How fun is that? You just need to mention it to your practitioner and have them add it to the "special requests" notes. Or, if you are like me, you will forget. After all, in the hype of the moment, we are not thinking about our gift lists! I rarely find myself chatting about dolls as our kiddos are slightly non-compliant at Continue Reading
