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
How to print a pictorial grocery list in minutes…it’s a game changer for our daughters.
The girls always enjoy having a purposeful trip to the store. Coincidentally, I always have trips to the store...not necessarily enjoyable. Over the past decades we learned to head inside with a deep breath and a prayer. I know that the girls will want to assist with the task. They will want to find certain items to add to the cart. Subsequently, I can guarantee they'll go rogue when it comes to the list. Next they'll get distracted in the aisles and take out a few people with their wheelchairs when they lose focus. As a result, I have ten extra gray hairs when we leave. But we do it anyway. Life skills. Entertainment. The Pandemic of 2020 changed how we do our grocery shopping. For a few months I was the only one, the designated shopper, who went into grocery store. Thankfully, the girls understood the fears and stopped asking to join. By early summer I realized that my attitude towards getting groceries had changed and I dreaded the whole ordeal. Although a little late to the game, I finally tried ordering groceries online for curbside pickup. I love Continue Reading
Getting the wheelchairs to mountain tops (in the Lehigh Valley PA Appalachian region)
High atop Hawk Mountain You know by now the girls are driven to be out and going. And conversely, they are NOT pleased to be home and sitting still. This Pandemic is just a magnifier of that struggle. We continue to look for out of doors areas to visit. I don't know all the latest "facts and figures" but it SEEMS safest to be outside. But that is not always the easiest way to go with power, or even manual, wheelchairs. The two recent flash floods didn't add to our convenience, either. So when the girls wanted a field trip to send a caregiver off to college with style, I found something new to do about an hour drive from us. As is currently normal, you need to grab your masks for public areas. Map to Cabelas in Hamburg PA If you are from the North East you are probably already familiar with Cabelas sporting store in Hamburg Pa. Some people enjoy the store as a field trip destination in itself. They have different backgrounds in the store of large and small game that have been preserved among a faux backdrop of the great outdoors. As one of the largest 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
