A new and different horizon Many say they will never forget where they were when the twin towers fell. So where was I on September 11th? That day changed more than the skyline That morning I went to an appointment with my friend who ran a massage therapy business out of her house. I thought it may relieve some stress. Two year old twins affected by cerebral palsy (plus 8 and 5 year old typical daughters) left me tired. It was extra exciting because I was also getting my hair cut. It was a real "Mom's morning out" extravaganza! As we finished our time in her shop we began to hear gasps and sobs from her living room. When the appointment ended she went out to see what was going on. She found a friend, a New York transplant, watching the news on her TV. She was too scared to watch alone and had come over to be with someone. Before long I joined them in front of the TV...so confused by what we were seeing. Once I gathered myself together I headed for home. But first I stopped by school to see if I should take my children home. It really felt like Continue Reading
Endurance (or How families affected by disability have a leg up during the Pandemic)
It's been a tough year thus far. I don't think there's been another year that became an adjective, a negative one at that. "Ack, it's so 2020!" Even more depressing are the headlines about how the Pandemic is negatively affecting those with special needs. Evidently, we are not "all in this together" as we were told back in March of 2020. If your family is faced with disability challenges, then I suppose you realized that pretty quickly. This past year I started a habit of telling myself "I'll process that later” and just simply continued moving ahead. I tried not to think or feel things too deeply. Ahhhh, coping mechanisms. Last month my daughter texted me some thoughts and validated that my spring had been stinky. She also suggested I try to find someone who could unpack that with me. And, while I MAY "process that later", it already brought me comfort. Somehow the simple acknowledgement that MY spring (during these times when we were apparently “all in this together”) WAS rough made my endurance feel validated. Most likely yours was pretty lousy, Continue Reading
Our unexpected Disney Isolation Vacation needed some imagination!
Isolation vacation using imagination This SHOULD be the post I write as we spend our last day at the beach before our return trip home from Florida. During the social distancing and stay home orders due to the Coronavirus Pandemic, you have most likely answered "what day is this?" often. But I know that THIS week the girls are not looking for an answer like "Sunday". What they are looking for is something like "the day at Animal Kingdom". I thought it was bad being asked for the day of the week, this is just that much sadder. We are anxious to give the plans another whirl WHENEVER the Disney parks reopen. In the meantime, please go along with us for our homemade day in Disney...or as we call it, our Disney Isolation Vacation! It is funny how imagination works. And music. And laughter. There were a few moment where things actually felt magical, just in a different way. https://www.facebook.com/smallBeginningscoffee/videos/1194590297547096/ Our Disney Isolation Vacation Continue Reading
*Updated: 3 ways I’ll communicate for my kids if I can’t be with them during a hospital stay.
*As of June 9th a press release was made for the Office of Civil Rights regarding those with disabilities bringing a support person to the hospital when admitted. I was surprised to know that this was still continuing to be an issue! Find the details here: Press release from June 9, 2020 Know your rights booklet https://youtu.be/9y1rOWyf_XM East to follow video with guidance A few weeks ago I watched a friend live out that concern. It had been an unspoken fear for awhile as we heard that those admitted to the hospital during the Covid-19 outbreak have to go alone. Each meal and snack I have become a broken record of "chew that food!! We are NOT going to the Emergency Room with all the germs!" Any walk we take becomes even more concerning to me, "Watch where you are going! Don't drive into anything or off the curb...WE ARE NOT going to the ER!'. This is in addition to the excessive hand washing and social distancing to avoid Coronavirus exposure the best we can. Then a friend asked for prayers as her son aspirated and needed to head to the Continue Reading
How we are surviving the quarantine…so far.
There are reasons this site is called Wheel Life Adventures. Our girls haven't sat still a day in their lives. They were born feisty and stayed that way. Some people like to say it has worked to their benefit. It has certainly kept us on our toes...and on the move. First, some background. The girls have cerebral palsy as a result of prematurity. They were born at 30 weeks and struggled to breathe with immature lungs. The lack of oxygen to the outermost parts of their brains caused the loss of those cells. That can result in varying types and degrees of cerebral palsy. The fact that they are twins did not cause the similar cerebral palsy. In fact, doctors were surprised how similar they stayed as they developed. While they are not exactly the same, they do have a lot in common. I am not sure which was harder for us to swallow, the loss of motor coordination (they both drive power wheelchairs) or the slowly revealed struggle to read and write. Obviously there is a whole lot more to their stories, but the current status is that our girls like to have plans, Continue Reading
When the Night to Shine ends, please don’t forget us.
When I saw the request for volunteers it said something like "this event is the highlight of the year for the attendees, so please come out and help with the Night to Shine." I didn’t know whether to laugh or cry. I mean, in our house, we try to have a good time all year long! While it is a good time at Night to Shine, and we do look forward to it, it is not the only event of our year. Our daughters love our family vacations, family dinners, holidays, Double H camp and lots more! If you know our girls you know they love life...and many people. Also, if you know our twin daughters, you know they are both very different. One craves crowds with lots of activity and the other prefers one on one time. It’s the latter one I was concerned about as we headed to this prom started by Tim Tebow. As I caught her eye in the rearview mirror I commented to her that she could find quiet places to visit with friends during the evening. I began coaching her on manners and ways to enjoy the night when she interrupted me with "I’m fine tonight, mom!". In my mind I said the words "we’ll Continue Reading