Glass child is a term used to describe the sibling of a person with a disability. The word glass reflects that often others see right through the typical sibling and focus only on the person with the disability.
Just in case you ever get a chance to meet her, please don’t tell her she is “just a van”. She believes she is so much more.
Friday morning came too soon. I woke up exhausted. Emily was to go to school on the bus. I knew there was a 50/50 chance the bus would not show up and it did not. I loaded everything into my car and off to school we drove. I started crying on the way. I was tired and had reached a point of breaking down. At that moment, I realized that the trip had been fun, but it was also a lot of work. Todd and I had cared for Emily for the past 18 days with no help. She had trouble sleeping. She had panic attacks during every aspect of hygiene from bathing to toileting. She refused to help with transitional walking. My hips and body were sore and stiff from long hours sitting in the car and sharing a bed with Emily. My self-care had taken a back seat during the trip and I was feeling the results.
We will face obstacles of access with Emily and her wheelchair. We will be in places with restrooms that are not adequate to meet her needs. Lifting and transitioning Emily will be physically tough on us both. We will have to help her manage her anxiety and fear as we take her out of her routine and comfort zone.
All my husband wanted for Father’s Day was to go camping for the weekend. He planned the location and we got to prepare for the trip. We would have Emily with us so we decided to take the trailer. It was also going to be warm so having the AC inside the trailer would beContinue reading “Bumps in the Road and Holding Hands”
I challenge you to try a new way of looking at things. Dare to question your belief system. Decide if it is useful to keep. Embrace a new belief or redefine a word in your life. It could be the start of amazing discovery for you and those you love.
This past Sunday was Mother’s Day. In my experience, holidays often come with unexpected or unwanted emotions. Grief and sadness are the two that show up on the regular. Holidays tend to highlight or magnify the loss I have experienced. They are a reminder that my parents are gone and not here to celebrate. TheyContinue reading “The Gift of Acceptance”
I like to have a plan. I love the look of my day planned out on paper. It is a map that gives me my direction for the day. I am not attached to any planner or scheduling tool. I use what is in front of me and make it work. I am currently usingContinue reading “My Superpower: Adapt and Pivot”
The title sounds a bit harsh but I am not a fan. We all experience anxiety. It is a normal emotion and can be useful. I get anxious when I am running late or driving in traffic. Many circumstances can bring up anxiety. Most of us can practice tricks and tools to temper the feelingContinue reading “Anxiety Sucks”
We all have ideas of what self-care is. A day at the spa, a weekend retreat, a massage…you get the idea. Friday I had my first hair appointment in six months. I consider that self-care as well. It was an evening appointment because you take what you can get in COVID times. I fed theContinue reading “Sometimes Grace IS Self-Care”