IF

If there was a two-story house that was totally accessible with spacious rooms, wide doorways, and a small elevator to access the rooms on the second floor. (That's right, an elevator. I told my mom that I wanted to live in a house that had an elevator in it .)  The house has a bathroom that is huge with a roll-in shower. The shower has a door that can be closed for privacy.
That's where I'd live.

If there was a house where ramps had replaced steps. The attached garage housed a state-of-the-art wheelchair-accessible van that was always serviced and maintained.
That's where I'd live.

If there was a house with an enclosed patio where the residents could sit and watch the birds feed on bird feeders randomly hung on the patio.
That's where I'd live.

If there was a house where the residents were not matched up based on the severity of their CP, but based on their shared interests.
That's where I'd live.

If there was a house where the residents had total control over the hiring of staff. No one would be hired until they had been given extensive training. The residents would make sure that their staff had a clear understanding of all aspects of cerebral palsy before being considered as a candidate to work in the house.
That's where I'd live.

If there was a house where the staff really cared about the residents. 

They put their cell phones down in favor of interacting with the women they cared for.

They cared about making a difference in the residents' lives. 
That's where I'd live. 

If there was a house where a resident's privacy was respected.
That's where I'd live.

If there was a house that had the positive aspects of both a nursing home and a group home.
That's where I'd live.

The house I have described is my fantasy.

Imagine if my fantasy becomes reality.




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KEEP HIS DREAM ALIVE

The words in this image. My post from last year. A list of positive words. His dream.
https://confessionsofadisableddiva.blogspot.com/2019/01/peace.html

The violence continues. Hate grows.  We have learned nothing.

How did we move so far away from his dream? What's it going to take for us to start caring about each other, about our planet?

It's been my experience that young people do not care about anything but themselves. Cell phones, video chats, texting, and BlueTooth. 

If their phones were taken away they would not know how to hold a conversation. Everything is a joke to them.  In my opinion, all many young people want is a job where they are required to do as little as possible. I am saddened by this. Technology has replaced conversation. I am afraid the same is true of many adults as well. Turn off your phones. Start talking, listening, and learning about one another.

I fear for humanity. I fear for our planet. We have to start caring about each other.  We have to care more about our world. We have to keep his dream alive.

"We may have all come on different ships, but we're in the same boat now." – Martin Luther King, Jr.

"We must learn to live together as brothers or perish together as fools."  – Martin Luther King, Jr.

"We must accept finite disappointment, but never lose infinite hope."   – Martin Luther King, Jr.

YOU'RE ALWAY IN MY HEART

I wanted to commemorate the day. I did not know what more I could say. 

In 2016 I wrote about you. A post for Father's Day. I wrote about all the things you did both big and small. 

https://confessionsofadisableddiva.blogspot.com/2016/06/my-dad.html

We never got to have an adult conversation. I never got to tell you my hopes and dreams for my future. I hope you'd be proud of the woman I have become.

I don't know if I told you how much I loved you the last time we talked. I was twelve years old. I was probably boring you with some stupid story about my day at school I know you listened  Asked the right questions, and laughed in the right places. You never let me know how sick you really were. Then your calls stopped.

I knew you were sick. I also knew you'd get better cuz parents didn't die. They lived forever. Of that I was sure. On January 18, 1970, I found out I was wrong.

You've been gone for fifty years. I miss you more than ever. I understand why you were so tired. it was because running a grocery store was a big, stressful job. It was a family business, but you worked the hardest of all. For me having the store was cool. None of my friends could ask their dad to bring home candy or bubble gum. The store was definitely a plus for me.

You worked hard. When you were diagnosed with Cancer you fought just as hard.

I hear people talk about how much their parents get on their nerves. I'd give anything for one more day with you watching TV or listening to the records you loved. You'd fall asleep watching TV. That's okay. I get it now. I do the same thing.

Fifty years. Half a century. It doesn't seem possible. I love you, Dad. I miss you. You're always in my heart.

MY CP IS A BALANCING ACT

It sucks not having sitting or standing balance. Feeling like I am going to fall is for me, the worst feeling in the world. If I actually do slide or God forbid, fall as I have countless times throughout my life. Forget it.  I am a wreck.

In the '60s doctors believed that if a child with CP did not achieve sitting and standing balance by the age of eight they never would. I didn't But it was not for lack of trying. 

Every night my mom would sit behind me supporting me as I stood in front of her.  I'm sure she was praying that when she let go of me I would stand on my own. It never happened. When Mom let go of me for a split second my body would wobble and she'd hurriedly catch me before I fell. My friends with CP achieved balance. I wanted to walk with crutches too. I wondered what was wrong with my brain. Why was it so messed up?

In PT they tried to teach me how to fall safely.  Mastering how to fall safely was a part of learning how to walk with crutches.

My PT was behind me with her hands on my shoulders. When she let go of me I was supposed to fall on the mat in front of with my arms outstretched to catch myself. Never happened. I fell like a ton of bricks onto the mat. I froe the minute I felt her let go of me.

When I tried to walk using crutches the same thing happened. I was fine as long as someone walked behind holding on to me. If they tried to let go. I would start to fall. 

I remember when a teacher sat me on a chair without armrests when I was in nursery school. Boom. I fell off the chair and hit my head. I spent the rest of the afternoon getting X-rays taken of my head to ensure that I did not have a concussion  

I've lost count of the number of times I fell and hit my head trying to walk in parallel bars, use a walker, or try to walk with crutches. Each time I was taken to the hospital for X-rays. I never had a concussion. Thank goodness.

I have been using a Sarac Lift for nine years. I began using this lift while in a nursing home.  The straps either popped off of the lift or were taken off by a staff member.  

It is freaky hanging by one strap for a minute or two.  The straps don't pop off often.  Once my staff learns how to properly attach the straps to my lift they don't come off at all.

My staff mistakes fear for meanness or anger. Anger comes from fear. I am afraid of falling. I am afraid of my CP not being understood. 

I  have trust issues from incidents that happened long before I moved into this house. It takes me a long time to trust someone caring for me.  I know that I need to have faith and trust that they know what they are doing. Trust does not come automatically. Mutual trust between a staff member and their client is built over time.

My CP...

It's a balancing act. 

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SPECIAL PEOPLE

My mom was in hospice care for six months before she died. Once I accepted the reality that my mom needed to be in hospice care I was able to see how much they cared about, not only my mom but me as well 

The hospice workers did whatever they could to ensure my mom was comfortable and happy in her final months. 

The ladies who cared for my mom were kind and caring, patient and gentle. They listened to both of us.  I knew I could call them when my mom was in pain. I did many times. Even in the middle of the night. The calm, reassuring voice on the line knew what to do. I was not alone. 

When I lived in the nursing home I asked a hospice worker if I could be placed in hospice care. I knew the answer. I was not terminal. I definitely wasn't sick. I told the woman the reason for my request. I saw how gentle, kind, and caring they were when they assisted their residents. I remembered the kindness that had been shown to my mom.  There were times when I needed a little extra kindness.

The woman I asked told me that while I was not a candidate for hospice she would be happy to give a hug and talk to me for a minute each time she saw me. She did. She still does when she sees me.

What I learned from my experiences with those who work in hospice care is they do not just treat the disease. They treat the whole person. Working in hospice care is not just a job for those providing care it's a calling. They help to prepare a person who is terminal for their next journey. What an important job that is.

It's almost ten years since my mom died. I will always miss her. I  will always remember I will always be grateful.

THE PERFECT RESOLUTION

2020i is here. It is not just a new year. It's a new decade. .That is indeed a reason to celebrate and make resolutions.

You will make resolutions that you will keep for a week at the most. You'll feel guilty because you let yourself. down. You'll feel guilty because you let others down. You'll make a solemn promise that in 2021 you will nail it. Although you know, that the reality is, there is a good chance that you will break your resolutions five minutes after the clock strikes midnight in 2021.

Here is a resolution you can keep. Good news. This resolution has nothing to do with dieting. You will gain something if you keep it, but it won't be weight.

Residents living in long-term care facilities need things to look forward to. Their lives are the same day in and day out. That's why it is so important to keep your promises to them. Your visits, or your phone calls, or the outings you plan with them may be the only thing they are looking forward to. You may be busy, but they are not. Why do you think their eyes light up when they see you? it's because you remembered them. You took time out of your day. You made them feel special.

You'll screw up. That's okay. The Universe and God are forgiving. The person you may have disappointed will give you another chance too,

A new year. A new decade. A fresh start.

Give it a try. Make promises that you can keep. You'll make your loved one so happy. Here's the surprise. You will be happy too.

Happy New Year.