Recently I was able to visit my sister for a few days by myself. The very first evening in town something felt off. I realized what it was as I headed through town walking the sidewalks back to the car after our dinner out. I found myself frequently turning around to check on the caravan that I usually travel with. Only they weren't with me. Strange feeling!! It made me realize how I had grown accustomed to travelling as a group for almost two decades. For many years, when we went anywhere, we arrived as our own parade. Often six of us in a line, two driving power chairs. Not just any two, though. A matched set. A pair. Identical twins. Either one of those situations causes people to take another look and so the combination adds up to an extra looong look to process. It can be interesting how people process our family. I understand it. I don't generally take notice anymore as it is just a part of our comings and goings. But that time it was hard to overlook. As we headed into the grocery store to hit up their hot and cold buffet for lunch we passed another group chatting on Continue Reading
Archives for October 2018
Yellow Dot Program review
I received our Pennsylvania Yellow Dot booklet to record medical information and keep in our van last week. Have you heard about the Yellow Dot program? On the Pennsylvania Penndot website they state the program: assists citizens in the "golden hour" of emergency care following a traffic crash when they may not be able to communicate their needs themselves. Placing a Yellow Dot decal in your vehicle's rear window alerts first responders to check your glove compartment for vital information to ensure you receive the medical attention you need. When I consider the amount of time we travel the Pennsylvania roads with my daughters in their wheelchairs, this certainly sounds like something for our vehicle. I have tried not to dwell on the thoughts of what would happen if we were involved in an accident. But... What if something happened and I could not speak for myself or my daughters? With this thought, I sent for the Yellow Dot kit and received it in less than two weeks. The kit contains a sticker to place inside the rear left window and a booklet to fill with Continue Reading
Normal Day Birthday
I had a birthday this month. Many times birthday greetings come with wishes for special events for our BIG day. Often there are questions of what we DID to celebrate. Sometimes it makes me anxious...fears that I haven’t made grand enough plans. What if the day is a disappointment? Nothing seems to measure up as worthy in comparison to childhood parties, middle school sleepovers, sweet sixteen surprises, and even over the hill bashes. But this year I wanted it that way. You see several friends are having their turn at sitting in a hospital room at their child’s bedside longing for nothing more than a schedule. A routine. A dull day. I stayed home on my birthday. I did some dishes, ignored some laundry, and stayed extra long in my pajamas. I took the girls to their appointments. We had a quiet dinner out. And I gave thanks for ALL of it. Thanks for the birthday blessings, friends. And may God bless your year as well. Continue Reading
Food cubby provides extra edges for utensils
Check out the FOOD CUBBY event on zulily today at $9.99! Find it here,These dividers suction to a plate and are made of BPA-free silicone. Like I have mentioned, we find a lot of everyday products to assist with mealtimes. The food cubby is something new to us! I think it could help in a way that it wasn’t even intended: extra rims to push against as a way to assist the food onto spoons and forks. If you have missed the food cubby sale on Zulily, they are also available on Amazon in green or orange. Some of the links in this article are "affiliate links" and should you click on an affiliate link and purchase the item, we will receive an affiliate commission. (The price of the item is the same whether or not it is an affiliate link.) I only recommend products or services I find beneficial.By using the affiliate links, you are helping support our Website-thanks for your support. Continue Reading
Ainsley’s Angels roll with the wind
Just like typical siblings, our daughters with cerebral palsy would watch the activities of the older sisters and beg to participate. Fortunately, when little sister wanted to join in on a 5K, big sister found a way! The very first community race makes me cringe at the memory. It’s an absolute miracle no one was hurt and the push chair didn’t break! But they sure had a blast! After mixed reviews if that first 5K qualified as "successful", we spent some time researching ways to obtain a running chair to safely try again. Thanks to some generous donors, they each have their own running chair. The second time she chose a Color Run and it was a big hit! Shortly after this run we were introduced to Ainsley’s Angels. Ainsley's Angels is a non profit group who desires for everyone to have opportunity to participate in endurance events. When we first connected with our local chapter of AA we recognized the group functions as a family...with each race being a bit of a family reunion. Our daughters LOVED being the "pullers"/riders. They have been hooked on participating as Continue Reading
Adapted products for mealtimes
Two decades have brought us a lot of adapted products. Especially those that revolve around eating. While our twins' premature births brought low birth weights and developmental delays they had their older sisters to observe and imitate. We often did not see the advances they were making and continued to look at them as our babies. Then it became apparent that these two were not going to stand for it. At. All. I remember when one of the twins (the very babiest of our twin babies) pitched a fit that we couldn't seem to resolve. Until, finally, she had motioned and growled at us enough that we narrowed down the subject and the action she desired. She wanted to sit up to the table just like the way the rest of the family did. Her wheelchair at the time was a supportive stroller. No highchair, no booster seat, nothing babyish would pass...it had to be a WOODEN chair. Just because the cerebral palsy had delayed her speech and developmental milestones didn't mean she was going to be content waiting for it to happen...and wait to join the life of her big sisters. That was Continue Reading
