Talking books seem like a great way to occupy our girls. Perhaps, like us, you are coming to the end of a long summer break. Maybe you already ventured out and sat for long hours on a road trip. Or maybe you didn’t venture out and just sat for long hours. Maybe you are still dreaming of sitting peacefully lakeside while reading a book. I have that reoccurring dream often! Unfortunately, sometimes unplanned hours of quiet time (whether at home, in the van, or by a body of water) can feel like torturous monotony to our daughters affected by disability. I am always seeking ways to help occupy their time. This is how I became interested in the National Library Service for the Blind and physically handicapped and their program to borrow talking books. In a nutshell, this is a free library service to those who need assistance to read. This difficulty may be due to blindness or physical disability that make reading regular print material a hardship. Once forms are filled out and approved, braille or audio book readers are provided. In fact, Magazines and music instruction are Continue Reading
Accessible Day Trip to Ocean City NJ
After a really terrible spring season I became desperate to end the cycle of yuckiness. A chronic cough for one of the girls was a part of the crud. I always feel like salt air and salt water clears that up, so I did what seemed like an obvious fix: We packed the wheelchair van for a beach day in Ocean City, NJ. I almost always make a spring day trip to reassure myself that the ocean is still there and all is right in the world after a long winter. I never had time to do that this year so I definitely needed the reassurance! While it may not have changed anything physically, It sure helped us mentally! After recently reading about blue space and green space, I believe in the real benefit of time spent at the ocean! I find it to be such a healing place. Anyone else?? According to a study placed in Health & Space: Living in a neighborhood where you have lots of opportunity to gaze at blue spaces — bodies of water like the sea — is associated with lower levels of stress, researchers Continue Reading
Not the Texas post I planned to write…
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
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
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