We finally made all the accommodations for Meghann to join us at home for Thanksgiving, and I was very thankful.
My daughter Meghann is 30 years old. She moved into a 8 bed home four years ago. She has steadily gained weight by no fault of her new surroundings. Meghann was born with a genetic abnormal gene that was determined through genetic testing. This gene was carried down from her biological side of the family. She has been diagnosed with osteoporosis and is currently menopausal. ( I never dreamed I would be going through menopause with my 30 year old daughter LOL) Her genetic condition has been diagnosed to be the cause of her steady weight gain. 
This weight gain has effected Meghann’s life physically. She can no longer bare weight on her legs to stand. She has a significant amount of swelling in her legs and wears ted hose daily. She is not able to move around in bed freely or easily. Shopping for age appropriate clothes that are plus size has been challenging. A larger wheelchair had to be purchased for Meghann, and width became an additional problem.
Along with Meghann’s physical issues it became more difficult for us to bring her home. We had to buy a new hoyer lift, re-arrange the house for a bed, measure doors, and a ramp for entrance. With Dan’s (my husband) talent and skill we were able to get everything done before Thanksgiving. We had a wonderful time, and Meghann enjoyed every minute being home around family.
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| Lift |
It was during this visit that my back started to hurt. Although we had the hoyer lift there are many times while caring for Meghann that the back ends up suffering. I was lucky throughout the years that I learned the proper way to lift, and Meghann could help. Unfortunately when we traveled user-friendly restrooms for Meghann were nonexistent. Meghann is incontinent. (which means having no or insufficient voluntary control over urination or defecation) When traveling in our accessible van I had to transfer her from the wheelchair to the floor of my van after placing the wheelchair outside to make more room. During this process there was never a proper or easy way to successfully not use my back. It is amazing to me that I don’t have more problems considering I had very little help with all of these issues until Dan came into our lives.
The reason I wrote about my back ache was not for pity. There are millions of people who suffer from back issues daily.
It reminded me of the many trips that Meghann and I made traveling on airplanes and in the van. Along with home accessibility traveling outside of our world was not always easy. I was always unable to change Meghann in a public restroom. The majority of time the restrooms were not set up for Meghann to use. We needed to have a large changing table where I could transfer Meghann onto and then change her.
I recently read a story about Sabrina Kimball from Tallahassee Florida. In 2015 she started her universal changing places initiative. The purpose was to make restrooms more user-friendly for all people,especially those who are special needs. She was inspired by her 20 year old son, and the difficult time they had in public restrooms. I am always in awe of the people who take their personal challenges and find solutions or make changes for the greater good. Everyone has a story, and Sabrina's situation is inspiring to me. This is why I started the online support group for parents/caregivers of special needs children and adults. I hope I will help inspire or motivate one person to make a positive change while using their own personal experience to help others. Feel free to share on my blog your personal journey.
What: CELEBRATING THE SMALL STEP
Online support group for parents/caregivers of special needs children and adults
Grandparents, aunts, uncles, brothers and sisters are welcome. As long as you have a
loved one with special needs you are welcome.
When: The first Tuesday of every month. Upcoming meeting- December 5th 7 p.m.
Topic: Christmas toys, open sharing
1. One time registration
2. Sign in using the ID number ( 859 589 845) on laptop, Ipad, computer. Use video and audio or only audio.
3. Second option- Call in free on your phone (646 558 8656)
4. Join in on the conversation or choose to just listen. Your choice.
Topic: Open meeting/Christmas toy ideas
Sign on and lend support to one another through sharing similar struggles, experiences and offering suggestions on solutions.
Feel free to contact me for more information:
Jill
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