“The best laid plans of mice and men.”

Little did I know that none of my plans would work out for us this Christmas.

This year I was looking forward to having Meghann home for Christmas. We had a trial run at Thanksgiving and we did pretty good.   Although my back didn’t adjust as quickly with the added work. It was a learning experience of what we needed to do differently.  With my back recuperated I was ready for Christmas.  I love to decorate, bake, cook, shop and watch sappy holiday movies. ( Hallmark right MB and Liz?)  I look forward to Christmas morning when everyone gathers together to open their gifts... especially my Meghann. Meghann’s excitement invariably grows rapidly as she gets dressed Christmas morning. Her enthusiasm is contagious to everyone around her.  I was particularly excited for this Christmas season. It had been a while since we had  Meghann with us.   

Last December Dan and I purchased a house in his hometown. We wanted to settle for a couple of
years after traveling for a few years and plan our next move.

I was looking forward to the new changes that Meghann’s Christmas visit would bring this year.

In the past, Christmas meant traveling to other homes that were never accessible to Meghann.
I would fill my days with questions such as how will I get her wheelchair into the homes we had to visit?
How much medicine, wipes, diapers, clothes, and patience to  pack?  
 It meant being around children who left Meghann out of their games, and receiving gifts that
Meghann did not have the skills to enjoy like other children her age. None of these issues would
be a problem this year. Meghann was an adult now living in a home with seven other girls.  
I was older, and we had a new obstacles. Hoyer lifts, ramps, sleeping arrangements, accessibility
were all things we were use to but now our age was beginning to be apparent to us.

Our current home was the first house that Dan and I had purchased  and lived in together. It is a ranch style home which would be easy access for Meghann’s wheelchair. We purchased a hoyer lift to aid in transferring Meghann from her chair to the bed. We put up a portable ramp for easy access into the front door. We arranged the house to accommodate a bed for Meghann and we started planning a big Christmas meal for family. I couldn’t wait to fill the house with the scent of a real Christmas tree and decorate it with all of the ornaments that our kids and grandchildren had made with their little hands. I started unpacking the only three boxes of Christmas decoration that I had save after our downsizing.

The first two things that I saved were  Christmas stockings that my grandma hand knitted for each one of her grandchildren and great-grandchildren before her eyes could no longer see well enough to stitch.

Another item was a giant wall hanging that my grandma had made of Santa Clause. It seems like yesterday that she was sitting on the couch securing the green tassels onto each end of it.

The last item displayed was a Santa that sat on a table at my great aunt’s house who spoiled my twin sister and me. The little Santa’s beard is not as white as it use to be, and the red suit is starting to fade but I still love it as much as I did when I was a little girl. Those few items tucked away for three years would light up my heart with loving memories as I carefully placed them throughout our home for everyone to see. The house was decorated, gifts were wrapped, and the shopping was done.  I was ready for the holiday festivities to begin. The only thing we needed was to pick up Meghann.

My plans soon started to change.

After years of suffering with foot pain ( it only hurts when I walked or wore shoes….haha) I had the opportunity to have my bunion fixed on my foot before Christmas. Yes, I did it!  I decided that there is no good time to be laid up in the house. Winter seem like the logical time to do it, and the surgeon had time.  The day after my birthday, and a week before Christmas I went into the hospital for my outpatient procedure.  The doctor opened my toe up, put a screw in it, and wrapped it up for me to go home. Over a week now I have been elevating and icing my foot.  I have wobbled around with a bandage and boot on my foot. I have been forced to ask for help which many who know me has been a big challenge. This lead me to one of the most difficult decisions that Dan and I had to make. We decided after much consternation not to bring Meghann home for Christmas. I was heartbroken. But I couldn’t take the chance of injuring my foot and extending my recovery. I knew in my head that in was a wise decision but it still made my heart heavy with sadness.

Between my foot and not having Meghann here it threw me into a funk. I was upset not having
Meghann with me on Christmas morning. Then I started to feel sad to not have any of my family here
for Christmas. I fought the urge to take down all the Christmas decorations. The holiday blues were
hitting me for the first time in my life. All of this woke me up on how aging will affect my ability to care
for Meghann.  This was a new realization to me. Was it too early to start thinking about aging and
caring for Meghann?

While I was raising Meghann the big question I would ask myself was who would care for Meghann
when I was gone?   The reality of me dying and leaving Meghann alone was probably going to happen.
And I knew this fact.  It’s not as if I didn’t see my reflection in a mirror and notice myself aging.
I just didn’t think it would happen in a blink. My funk didn’t last long. I couldn’t help but appreciate
where I am today.  I am 54 years old and in relatively good health. I have had the opportunity to travel
around the United States with the love of my life. I have taken advantage of being an “empty nester”
by traveling out of the country several times. I am fortunate to have opened my heart and arms to
another daughter, son and grandchildren through marriage. I am fortunate to be blessed with several
nieces and nephews who make me bust with pride.  I have a doctor who is taking care my temporary medical inconvenience,  and wonderful staff at Meghann’s home who care for her every day.

The staff go above and beyond  caring for her.  They are kind and love her as well as her roommates.

Most importantly all of the people in my life are healthy and happy.  

Sometimes plans need to be shaken up a bit to remind me to be appreciative of how blessed my life is now.

Reminder!!

Online Support Group for parents/caregivers of special needs children and adults

Grandparents, siblings, aunts, and uncles welcome

January 2nd - Tuesday  7 p.m. Central Time

Guest Speaker: Terri Hancharick/ special needs mom and Program director of EPIC

EPIC is a community-based program “Without Walls” that provides clients with meaningful,
self-determined, inclusive health and wellness opportunities that initiated programming in January
of 2015.

Remember to join the online support group meeting this Tuesday night.  We have a great night planned.

The  first Tuesday of each month.

Stay as long as you wish.

Participate at the level that you are comfortable. Stay for 30 min or the entire hour. Your choice.

Use the app zoom

https://zoom.us/

ID number- 859 589 845

Or call-

Phone number  646-558-8656

Next meeting: February 6th at 7p.m

Contact:Jill

jillianm1963@hotmail.com

Txt- 815-866-3776
Check out the link below. It is the audio of the November and December online support
group meetings.
Copy and paste the link in your browser.

Topic: Sharing experiences Date: Dec 5, 2017 6:49 PM Central Time (US and Canada) Audio Only-1 (24 MB) https://zoom.us/recording/play/ssWYuDvtksRdSCuLkgTumywqfCTM7HQDRuzRJVstGzYI98RD5VGMWXgb5JcISlV7

Topic: Sharing experiences
Date: Nov 7, 2017 6:37 PM Central Time (US and Canada)

Audio Only-1 (24 MB)
https://zoom.us/recording/play/o6W8PccuqbVToAfp98DVXsP5gSpwi8ZoyTso7QvLb5OeJ0CpojLPwsKGobUN7anm

Thankful and Blessed

Have you ever noticed that when your back hurts you drop everything? Or when you have a sore finger or toe you constantly bump it in the same spot? This is what happen to me all week.  I either lifted, twisted, or bent the wrong way and hurt my back. I have dropped more things this week than the entire year. Okay….maybe that is a little exaggerated but you know what I mean. My back started to hurt  the day before Thanksgiving.  However it didn’t stop me from having a wonderful Thanksgiving day with Meghann.

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.

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

Where: Zoom  https://zoom.us/

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

jillianm1963@hotmail.com

What's wrong with her?

                                                             What's wrong with her?

It was a warm and sunny fall day. Meghann and I sat on my uncle’s porch step. I stared across the street to the park. I spent most of my days as a kid at this very park. The fall colors of the leaves were in full swing with shades of orange, red, and brown.There were kids playing basketball, swinging, climbing, and a couple on the tennis court. Meghann and I were accustomed to being spectators, and we didn’t mind. At this time Meghann was around 8 years old and considered nonverbal. Her ability not to carry on a conversation didn’t stop me from talking to her as if she would answer me.  I described the  scenery and activity in the park while Meghann listen quietly. We were unaware of the girl who appeared until we heard her voice.

"What’s wrong with her?" 

The little girl stared at Meghann, and slowly walked away from her as if she was contagious. As she waited for my response I assessed her age around Meghann’s.  It wasn’t the first time I was asked this question.  I had my answer well memorized as if I was giving a speech.   Of course I would tweak it depending on the age of the inquiring mind that wanted to know.

During the years I was raising Meghann, I was asked one question repeatedly. That question was always the same, and I never knew when it would occur.

What's wrong with her?

This question was asked by young children and sometimes strangers in public.  I have to admit there were times I would grow tired of the question. However I felt it was my responsibility to raise awareness and educate the community.  After all, it was in Meghann’s best interest for everyone to understand cerebral palsy. My motivation to explain was driven by the desire for people not to be afraid of my little girl. I believed I could educate, explain, and answering questions concerning Meghann openly. I hoped it would promote awareness and acceptance.

The first stroller

The more people who realized Meghann was a person first the easier it would be for her to be accepted and welcomed into her surroundings. I wanted everyone  to know she is an individual that people don’t have to be afraid of, who laughs, hurts, cries tears, tells jokes, loves, and gets mad.  As soon as people understood Meghann was more alike than different  the easier it would be for the world to accept her. Thank you to all of the people who bravely asked me the question. And for those who are too afraid, embarrassed or timid this is for you.

The beach in Florida

What’s wrong with her?

UNO Dealer

There is nothing wrong with Meghann.  You don’t need to be afraid of her, and she is not contagious.

She was diagnosed with  cerebral palsy at 11 month old. She uses wheels instead of her legs to get around. You can talk to her and joke with her. She has a great sense of humor and loves to give out hugs. She enjoys watching Wheel of fortune and doing puzzles. Communicating with her may not be typical, and that's okay. Meghann relies on sign language, gestures, and her augmentative device to communicate. Her augmentative device will do her talking for her, and she might even tell you a joke. Be patient.  Allow some time even if it makes you feel awkward with the silence. She may need a little more time to respond. You should ask Meghann questions that require a yes or no answers. It will be easier for her to engage. Be patient and you will find out what a wonderful, funny, lovable, smart and fun young lady Meghann can be. She might even kick your butt in a game of UNO or trouble.

The question over and over.

Have you ever been confronted  with well meaning people asking you repeatedly about  a challenge you are facing ?  You might become annoyed with the questions all the time. At times I felt that way with people.  I soon realized how therapeutic it had become by talking about Meghann’s cerebral palsy.   The repetitive questions and answers have educated me along with everyone around us.  Talking about Meghann’s cerebral palsy helped me accept the role of being a parent with a special needs child. It helped me recognize the role as a gift and contribution to society.  I have hated, cried, cursed, accepted, embraced, promoted, and loved my life as a parent of a special needs child. We are a one of a kind group. A group I am proud to be a part of every day. I cannot imagine my life without Meghann. She has enriched my life with patience, acceptance, tolerance, knowledge, empathy, and most importantly unconditional love.

The Special Olympics

                                                                   Reminder!!

Online Support Group for parents/caregivers of special needs children and adults

Grandparents, siblings, aunts and uncles welcome

November 7th - Tuesday  7 p.m.

Remember to join the online support group meeting this Tuesday night.  We have a great night planned.

The  first Tuesday of each month.

Stay as long as you wish.

Participate at the level that you are comfortable.

Use the app zoom

https://zoom.us/

Phone number  646-558-8656

ID number  859 589 845

November topic: Transportation and open discussion

Next meeting: December 5th at 7 p.m

Topic: Holiday challenges

Contact:

Jill for meeting ID number

jillianm1963@hotmail.com

Txt- 815-866-3776

http://parentingcelebratingsmallsteps.blogspot.com/

Follow the link below to listen to this months online support group meeting.

Topic: Sharing experiences 

Date: Nov 7, 2017 6:37 PM Central Time (US and Canada)

Meeting Recording:

https://zoom.us/recording/share/a5hG16SU72EfvIaK_NaOzoLi6-pjURtSgLeU6xONfj-wIumekTziMw