Embarrassment because of Cerebral Palsy In Family and Friends?

From time to time I go onto a CP Community Board on Face book. It is for all who have CP to congregate and ask questions and/or share their stories.

As I was scanning through I came upon this question. 'Ever see your child "embarrassed" because of you? '

Surprisingly to me, many had stories about their children being embarrassed.  Some kids requested they not walk with them etc.

It sparked a reminder of one of my online friends/fellow blogger had a set of parents who were not accepting as she grew up.  When I heard her story, it also boggled my mind. It still does when I think about it. She is a strong person getting through it all but I can't even guess how she felt.

One girl shared that she was asked to  walk in her friend's wedding. However, when the parents met her they said she would ruin the wedding. 

SERIOUSLY?!

The girl told her friend it was okay to find someone to replace her. She wanted her friend's day to be special and go smoothly. She knew her friend wasn't embarrassed.  

I admit she took it better than I would have. I probably would have done the same thing for my friend. But on the other hand I think I would have been hurt because she did not stand up for me. 

Reading other people's experiences make me realize how blessed I am. I have a family who have never been embarrassed by me.  They accepted me for who I was. 

I can say without a doubt that my sister was not embarrassed by me. Yea, like every sibling rivalry she probably wished I would go away as I was a pesky little sister. It was my job to make her annoyed, I admit I did it well sometimes!

None of my friends were embarrassed by me. But then again, I would not have friends who didn't accept me the way I am and were embarrassed of me. I was in two of my friend's weddings. I couldn't believe they asked me. I had voiced my fears of falling down the aisle with the long dress to one. Her response was it could happen to anyone and if I did, she would just come pick me up. It meant a lot to me that my friends accepted me and loved me enough to ask me to wobble in their wedding. (It was supposed to make you smile!)

My worst fear was for my child to get teased or embarrassed by me. But early on she showed she was not. She defended me when one of her classmates teased me and let him know it was in his best interest to keep his thoughts to himself. And in the fourth grade, she had a 4-H project. She did a presentation on Cerebral Palsy. 

It's unimaginable to me that people who are important in your life would be embarrassed by your CP. I just can't wrap my head around it.

I am sure I will be thinking about this for a bit, trying to figure it out. 

My jumbled thoughts are:  

It is not like you can do anything about it if you have CP. None of us with it asked for it. Probably all of us would agree that if we had a choice we wouldn't have it. But we're stuck with it and we just have to make the best of it. 

I understand children can be selfish and inconsiderate at times but to treat their parents who gave life to them like that, is incomprehensible.  

I understand some teens go through a phase of independence and embarrassment of their 'normal' parents. And maybe that is also true for children of disabled parents. 

As mentioned by others in the CP community  my worst fear came true for them. Their kid were bullied because he had CP so the kid requests they stay clear of him when they are at the school.  Or their sibling has CP and they are being teased because of it.  

Maybe it is not totally embarrassment but fear, of them not being accepted by others because of their parent or sibling with CP. 

It is such a cruel world. 

I don't know. I guess it never happened to me and I can't understand it. In my life, family was important. We were to love, respect and accept each other, period. 

What do you think? How do you think you would feel if you had any kind of disability and your child was embarrassed? 

Disappointment In Priest's Response

As posted previously I encountered a tactless Priest a few weekends ago. It upsets me and I have thought about it ever since. It bugged me so much I knew I couldn't let it go. After talking to others and praying I came up with a plan. 

I did not want to resolve this with animosity or put him in an awkward position. But I did want him to know what he had done.

After mass this past weekend, Hubby and I lingered until there were a handful people left that were off to the side talking among themselves.  I made my move.

I walked up to the Priest smiling and as we shook hands I put my other hand over his and looked into his eyes.

"Hello Father, the other day you asked me why I walked the way I did,..." I began. 

He ended the eye contact immediately interrupting and retorted "Yes, I wanted to know if you were hurt." 

At that moment, I knew it was not going to turn out the way I had hoped. His body language and averting eyes showed me he wanted to me go away. 

Determined and attempting eye contact (but failing as he looked everywhere but at me) l  softly said "Well I want you to know that I have Cerebral Palsy. You can Google it if you are interested.  I was hurt and embarrassed when you loudly asked me in front of most of the congregation. I am telling you this because I do not want anyone else to feel like I did. "

He chuckled (Yes he chucked although awkwardly) and said, "That was not the way I meant." 

Someone walked pass and he turned to them leaving me standing there and started talking to them. I was dismissed I guess. I just stared at him for a few seconds and walked away.

I was so very disappointed. I felt like I had failed.

But I didn't fail. I had a mission to inform him how it affected me.  The results weren't what I expected but I was able to do what I had set out to do.

I had faith and hope that he would see his error and attempt to make it okay. But he did not even apologize.  Probably in his mind, he did nothing wrong.

Maybe as he did me, I caught him off guard. Maybe he was so shocked he couldn't think 

I pray that he at least gives it one more thought before he acts like that with another person. 

I also will not let it affect whether I go to church or not. I will  enter the church every weekend with my head up high.  I am not going to mass because of his. I am going spend time with God!

Through my life I have had realizations as most of us do.  One of them is sometimes as much as you try, some people don't always get it or they do not want to get it. Regardless, it is nothing on me as long as I did my best. 

I have a blogger friend, Lyndz who also has CP.  She recounted my story adding her own personal experience with her parents who are Pastors. Please check out her blog. She even asked followers to stop at my blog and give "me some love." She made me smile. But her story always pull at my heart strings. I think of what I went through with this Priest, and it is nothing compared to what she had to go through with her own parents. She described me as a "fellow soldier in the cerebral palsy trenches". What an analogy! I love it. I wholeheartedly think likewise about her.  Thank you so very much Lyndzy

Warriors with CP such as ourselves need to band together for support and not feel so alone. 

She also posted a video. I admit I am not into music nowadays  I only listen to it when I am in the car and that is usually a classic rock. But this video pretty much hits home.

Thanks to everyone who has commented and emailed me with your love, support and advice. It is appreciated greatly.  

Blessed

I am blessed. Because of each and everyone of you!

I thought my last post was gross, drab and depressing. However, YOU, my followers did it again! YOU made me see an entire different angle of what I thought was the most embarrassing moment  of my life..

One of my distant cousins knows my mom well and she pinned my mom exactly. Dry, sweet and to the point. She pictured it and laughed her heart out. I am glad I could do that for you, Kim! And to all those who laughed and got a kick out of it.

Thanks to those who privately messaged me with their own stories. It makes me feel less alone and less embarrassed because some of you really had worse stories than mine.

I want to apologize for this ragged post but I am really not myself but it kept playing in my head and I had to write it.

Thanks and PEACE for you all!

Most Embarrassing Moments~

We have had all of our MOST EMBARRASSING MOMENTS! After thinking, writing and rewriting I decided to let it all out. Also, a friend shared her story and I have to admit hers was worse. But let me talk about mine.

DISCLAIMER: This may contain  graphic and strong language.

It happened when I was in the hospital with an awful virus two weeks ago. Come here to catch up.

When I was in the ER and many times that day I was questioned if I had diarrhea and my response was always 'no'. I thought a couple of times, "Why do they keep asking me?" I never had to go the bathroom and never felt anything seep out of any of my orifices.

Lethargic with IV fluids pumped into my tiny body I laid in the comfy bed listening to my mom and MyLove chat. All of a sudden..I started farting.

My mom, the lovely compassionate Mother she is encouraged, "Let it out." She knows how awful my gas smells when I am sick. I mean farts never smell good but when I am sick, its the way my sickness leaves my body. We used to kid something crawled up inside and died.

Fast forward to around 12:30 AM the next morning, the nurse came in as the IV machine  was beeping. They had inserted  the IV in my inner elbow. making it positional.If I didn't hold my arm straight as a board,  it would stop the flow and the machine would beep. The nurse asked me to turn onto my side so she could get the tubing I was evidently laying on. My mom being awaken by the beep was standing on my other side. She lifted the blankets and exclaimed, "Oh My God!"

Horrified, I yelled, "WHAT?"

She proclaimed, "You have shit all over!"

The nurse glanced and immediately turned around and said she was going get the aide.While we waited, Mom was looking and said, "We are going to have to change everything. You have POOP from your neck to your toes!"

I wanted to cry and kept saying, "I didn't know! How did I not feel that? This is so embarrassing?"

She concluded, "It is just watery poop. Evidently every time you farted, you pooped."

The aide, Melinda  walked in with a stack of bed linens and gown. I apologized frantically.  She was a doll being professional but compassionate. She encouraged, "You're not the first one to do this nor the last."

Melinda was so sweet, professional and comforting as she bathed me and changed my bed. I heard my mom talking to Melinda as I wished I could be anywhere but there in my own poop.

I had never felt such degradation or helplessness!. Every time I moved, I continued to dry heave so I could not do anything to help except follow Melinda's gentle orders.. I hoped that when I was nursing I respected every patient there was as I cleaned them in the same fashion as Melinda was doing for me. I would never have wanted to put the patient in any more emotional turmoil that was necessary!

After I was cleaned I fell back to sleep. However, I woke up around 4:30 AM  and before I could do  or say anything, it happened again. I had a 'wet fart' as MyLove puts it.  It just came with no warning so the poop flowed. It wasn't so bad this time.  Melinda finished cleaning me up for the second time.

I ordered Mom, "Give me the bedpan."

She inquired, "WHY?"

I proclaimed, " I am not going to be embarrassed like this again.  It is degrading."  The bedpan became my "Throne". Of course after I got on it and was all set, the diarrhea had ceased. Go figure!

Later on a nurse came in and had to uncover me for an injection she asked, "You're using the bedpan?"

"No", I replied, "I just didn't want to poop all over again."

She contested, "Oh no, hun! You can't do that! You'll get bed sores from the bedpan." She  ordered me to roll over to take the bedpan. I was not happy.

My mom looked and said, "Look, ring around the butt!" She hadn't even realized how funny it came out but I chuckled.

So there you have it! My Most Embarrassing Moment ever.












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