If you are reading this in the future, then let me explain that we are currently in some sort of Pandemic lock down due to COVID-19. walking along the Rodale bike and fitness paths Just three months ago I could NEVER have imagined this. Nevertheless here we are: social distancing with two active daughters and power wheelchairs. They are anxious to get OUT. As I noted in an earlier post, we started out walking more rural isolated areas and moved on to cemetary paths at churches. They were actually interesting and easy to navigate. But throughout the past 80 days we needed a little more variety. If you are reading this in the present, please check the regulations and hours before heading out. I am going to share our four favorite paths in our area, thus far. I'm certain our trailblazing days are far from over. Not all of them were close by, some were an hour drive for us. No matter, though, since C likes to say "take me for a drive...a Looooooong one." What is it about a Sunday afternoon that creates the need for a long drive, anyway? I feared the long 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
Feeling incongruent during the Coronavirus quarantine
I imagine we are all feeling incongruent these days. I think it is one of the things that throws me off the most. We have all this time we weren't counting on, but we can't use it to travel, visit family, or shop for projects. More free time. Less freedom. I can have a moment of life or death panic for my kids after watching the news, and then five minutes later, I am scolding them for something ridiculous. I am both praying for friends with scary symptoms while scrolling through hysterical memes on Facebook. (People are just so clever!) This week has me especially off balance. They are saying it could be the worst two weeks. The Peak. It is also when the novelty of school...and stores... and movies... and hang outs...and church being cancelled seems to have worn off for the girls. Just when we should "lock the doors and pull down the shades" they have decided they can't stand it any more. But stand it we must. Just this week I had a flashback to when the tsunami hit in 2004. All we could do was watch in horror. Seriously, while it happened, that was all 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
How we would improve our stay in National Harbor, Maryland, the next time. (And I do believe there will be a next time!)
The Gaylord National Harbor Hotel and Resort overlooking the Potomac River. If you are like me, you are picturing Baltimore Harbor right now. Let's get this cleared right up: this is a completely different place. One we didn't even know existed! That is possibly because this area was developed just over a decade ago. National Harbor, Maryland, is a 300 acre waterfront development along the Potomac River. Busy town center The site has a convention center, six hotels, restaurants, shops, and condominiums.[13] National Harbor hosted Cirque du Soleil in 2008, 2010, 2012, and 2014 and also features outdoor activities such as a culinary festival and outdoor concerts by military bands, an outdoor movie screen facing the river, an annual ice sculpture exhibition, and a Peeps Day with a Peeps eating contest. The national spelling bee competition is held there. The Gaylord National Resort & Convention Center, with 2,000 rooms, is the largest hotel between New Jersey and Florida, and the largest in the Washington area. The site includes a beachfront walking path Continue Reading
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