Wednesday, September 14, 2016

Don't limit me

The word "limitation" means so much more to a person with a disability than to someone without a disability. For someone with cerebral palsy, the word limitation begins to be heard and often repeated as early as infancy. I remember hearing limitations from doctors, teachers, camp counselors, family and friends my whole life. However, I never set limitations on myself and didn't accept what others felt I could or couldn't do.

When you have a disability, such as cerebral palsy, all the outside world seems to focus on is your limitations.  The wheelchair is obvious, the speech impediments, the different way someone moves, and the need for assistance become the focus.  But what if someone looked deeper into someone's heart? They would find much more than limitations.

In my own mind and heart, I see no limitations for myself.  I naturally know what my body is capable of and just move on with my life.  Limitations hold you back, but I want to soar. And, so I did as well as the thousands of people who live with cerebral palsy. We aren't victims of cerebral palsy.  We are people who figure out ways to do whatever we set our mind to do. What you might see as limitations, we just see as daily life.  When someone tries to limit me, I try harder to find a way. 

Something that most people don't realize that people with cerebral palsy often forget that we have it.  No one, that I know of, sits around and feels badly about themselves all day. And if they do, believe me cerebral palsy is the least of their problems.  I only think about my disability when I'm trying something new or answering questions about it. Only once in awhile, do I feel bad about my disability or mad that I can't do something that it is just not possible.

What I have come to realize is that cerebral palsy isn't as limiting to people with disabilities as society can be. Society is the one dictating limits to us more than cerebral palsy.  For instance, steps to a public building such as a really cool new coffee house in town that we will never be able to check out. Employers judging someone based on what they see and think that they know instead of allowing someone to prove themselves. Laws that prevent people who have disabilities to get married because if they do, then they can lose much needed medical benefits that are needed to survive.

One of the biggest limitation are places such as Hollywood portraying an unrealistic view of someone with a disability. A recent movie out during the summer showed a young man who lived a better life than most of us choosing to commit suicide than to live with a disability.  Assisted suicide being pushed or even expected to people with any disability as a good alternative instead of conquering life itself. 

If I let the limitations that others placed on me settle into my soul, I wouldn't be where I am today. So many limits even if I could graduate high school let alone college. The ability to teach, dance, marry, have children, raise children, work, play sports and to be a leader are all limits I was given since I was diagnosed with cerebral palsy.  All the limits that I refused to accept and did what I wanted regardless of what others thought.

I hope that today someone would not place limits on anyone but especially those with cerebral palsy and other disabilities.  I hope today we can start to break down barriers that actually make life more difficult for someone with a disability instead of easier.  Instead of saying, "you can't do that," how about we say,  "how can I help you do that?" Live beyond limits and reach your goals set for yourself.

The beginning of my breast cancer diagnosis

The holiday season is meant for family, decorating, buying gifts and being happy. However, this year felt completely different since getting the news that I needed a biopsy on my left breast. We had Thanksgiving dinner at our house, and it was nice to feel the support from my family.

I decided not to tell many people simply because I didn't want everyone to worry. This meant especially my nine year old daughter didn't need any worries. We are close, and she knows that sometimes people who have cancer don't always survive.  My philosophy was to tell her when I had something to report, and not just speculation.

My mother is a nurse, cancer specialist and clinical researcher. I'm fortunate to know someone so knowledgeable. We talked about my potential choices. She said that if she faced breast cancer that she would have a mastectomy. The idea of having a mastectomy seemed so foreign and scary that I couldn't wrap my mind around it.  My family and I  sat in disbelief that this was happening.

After the Thanksgiving weekend passed and life resumed to normal, I sat one afternoon staring at the business card of an oncologist given to me after my ultrasound.  I  didn't want to call to make an appointment. It was just one more step making everything more real. My husband came home from nursing school and sat with me as I called.

A lump formed in my throat as I heard the receptionist say oncologist office. I explained everything to her, and she nicely set up an appointment. I believe it was the next week.   All I  could do was live as always while holding the weight of my future on my mind.

In movies that focus on cancer patients, time goes by fast.  It seems like appointments and tests are immediate. And either the person is cured or, unfortunately, doesn't survive.  Well, in real life, time goes slowly when searching for answers.  Life doesn't stop for you to deal with your emotions or obligations.

In my case, I had a third grader and a two year old to  raise. My husband was trying to support me as I tried to support him with nursing school. I had a house to take care of, pets, bills to pay and articles to write.  Life didn't stop for my diagnosis or anyone's for that matter.

My personal care attendant took me to my first appointment with the oncologist. My dad babysat my son and my husband sat anxiously in class. My heart sank as I saw the office building was clearly labeled Cancer Center. Just another reminder of what I might be up against and making my future a bit more hazy.

The office seemed dark and warm.  I looked around at the other people and thinking how unfair it is that anyone had to go through cancer during Christmas! My iPhone kept buzzing with text messages from my sister, mother, dad, husband and best friend. Texts of love, encouragement and seeking information.  Then, a nice lady wearing pastel scrubs opened the door and called my name.

My attendant and I went in a standard room with blue walls. The nurse seemed very nice and talked to me (which isn't always the case when you have cerebral palsy.) She made a nice comment on how quick my attendant helped me into a yellow paper robe that covered my  chest.  She said my doctor would be with me soon.  She also handed me a big white binder with information on breast cancer. She said that I could keep all of my information and future appointments papers in it. I sighed looking at the binder.

The doctor came in, and he introduced himself.  He examined me, which I knew was necessary, but still invasive.  He reviewed my X rays and said that he didn't see any signs of cancer, but wanted me to get another mammogram on the left side to make sure. What a wonderful relief I felt as I texted everyone when I went outside after I scheduled another mammogram.

But, the feeling of relief was shortly lived as feelings of doubts crept in when new tests came back. The pink journey continued.

Friday, August 19, 2016

Accessible Halloween in Phoenixville

Accessible Halloween 

Location - Phoenixville YMCA
Date and time - October 30 5-7

Objective: To give children with disabilities an opportunity to have a fun Halloween. Trick or treating is often difficult for children with disabilities due to lack of accessible sidewalks and homes. Accessible Halloween gives kids a free, fun, accessible event to celebrate Halloween.


30 Trick or Treat stations

Six or more crafting stations

Four or more games

Sensory room

To make this happen, we need volunteers to decorate, lead crafts, lead games, lead the sensory room, hand out candy, register people etc

The first meeting is August 31 at 5:30 at the Phoenixville YMCA. Let's make this happen!!! Please come out and see how you can help.

Please join our Facebook page to keep informed - 
Accessible Halloween

Any questions? Please contact me at jdm19460@gmail.com 

 

Sunday, July 31, 2016

The Turkey Hill Experience

A few weeks ago, Jeff and I took the kids to the Turkey Hill Experience in Lancaster, Pennsylvania.  I heard about it awhile ago, but we never got there. So, we finally set off and went on our way.

The drive wasn't bad at all and quite relaxing. Well, all except my husband living on the edge and trying to get there on an almost empty gas tank. But, none the less, we arrived in one piece and ready for our experience. 

The first thing we noticed was a gigantic cow outside the building.  Jason seemed afraid of the cow when we tried to take a picture of us in front.  I think it intimidated him being so big.  I'm the same way, but the cow didn't bother me.

Once inside, you are in the gift shop.  This is where you buy tickets for the experience or the experience and the tasting lab. We decided with Jason, the tasting lab would be too much.  After we purchased our tickets, we went upstairs in the elevator.

The experience is a go at your own pace and all on one floor.   It has several activities for children of all ages. My children especially liked the ball pit. Towards the end they have a five minute video that you can watch all about the process in making ice cream. 

 Our favorite part was getting unlimited samples of ice cream and iced tea.  Jason ate vanilla and offered to feed me some.  He even drank out of a regular plastic cup some fruit punch. We were all amazed at how well he did!  Laura found a new favorite ice cream - rocky road!

The accessibility was very good and price seemed about right. 

 

Monday, July 25, 2016

Thank you for letting me live

Recently, in the news, a teenage girl with a disability has announced that she wants to die and her parents are allowing her. Her disability is significant but she isn't dying. She can live a full happy life despite her challenges as thousands of us do. My friend, Emily, created a web site in response hoping to inspire people to live and encouraging parents, caregivers etc to encourage people to live. The web site is thankyouforlettingmelive.com. Below is my letter to my parents:

Dear Mom and Dad,

I'm writing this letter to thank you for deciding every day of my childhood to let me live. Forty years ago, doctors handed you a baby girl who was blue due to a lack of oxygen during birth. They didn't know if I'd live or die and wished you luck. It turned out that I have severe cerebral palsy that needed lots of patience, time and care.

You could have done many things in many ways to make your lives easier. But you choose to let me live. Not only let me live but live life to the fullest. I became one of many firsts in our area. The first girl with a severe physical and speech disability to attend advanced high school, earn a degree in education, marry and have two amazing children. I also won Ms. Wheelchair Pennsylvania! I recently battled breast cancer and came out stronger than ever.

Others look at me and think the worst. I'm in pain, have no life, do nothing and can think of nothing. You saw differently and thank you!! Life has its ups and downs, twists and turns but I'm so very happy I'm here! My children now exist. I play goalie for a hockey team with others who are also living life to the fullest. I now promote breast cancer awareness so I can help others live until whatever day destiny calls us home.

Every second of our lives matters. You knew I mattered too despite my spasms, twisted body and crooked smile. Thank you!!!

Jessica Grono
Writer / Speaker
Http://jessgrono.com
 

Thursday, July 14, 2016

To the medical professionals helping me with cerebral palsy

To a medical professional who is caring for someone with cerebral palsy 

During my life, I have had to see numerous medical personnel due to being sick or normal well check ups. Unfortunately, doctors and nurses do not understand how to properly communicate and care for someone with cerebral palsy.  In an emergency situation, not knowing what to do can quickly turn into a life or death situation.

Here are some suggestions that I believe will help if you're giving someone a check up, mammogram or any medical attention when you have a patient with cerebral palsy.

Don't assume you know everything. You don't know if the person has a mental challenge or a genius IQ. Stop talking to them like they are a child or talk loudly as if they were deaf too. They deserve the same respect as anyone you help or give service to. No need to treat them any different until you know their capabilities.

Talk to them. Often a person with cerebral palsy might have a personal care attendant, friend or family member with them.  But you should direct questions or directions to the person you're caring for. It's very impolite to go in and talk to everyone else but the patient. 

Not all people who have cerebral palsy have it the exact same way. How cerebral palsy affects someone varies from person to person. Some people might be stiff while others might have involuntary movements.  Some can walk and some can't.  It all depends on the person. Ask them how cerebral palsy affects them before guessing.

Please don't say, "sit still," to someone who has cerebral palsy. Sitting still can be extremely difficult and not a choice.  The more you ask someone to sit still, the more the body reacts by moving. Explain what you're going to do and try to work together to make it work. Ask if they have ideas on positioning to help make it more comfortable.

Listen to the patient even if they have a speech impediment.  Speech impediments happen to people who have cerebral palsy. It doesn't mean that they don't know what they're saying or not comprehending. It means that you need to listen and be patient so you understand what they need, think and feel.

Don't assume someone with cerebral palsy doesn't have children, work, marriages, and hold normal lives. Cerebral palsy doesn't affect child birth or the reproductive system. People with cerebral palsy are just people with a body that responds differently in motion. Plain and simple.
 

Wednesday, July 13, 2016

Jason and camp

Jason has been having so much fun at camp.  The camp is at the YMCA and for children age 3-5. The first day that he went, he wanted to go right back to camp.  It's half day and only in the mornings. After his first few days, I signed him up for a few more weeks too.

I'm happy that he likes camp so much because he will be attending preschool in September. Camp was a good way to determine how well he would do going to pre school. So far so good!  I like that he is doing crafts, listening to stories, playing outside and other fun activities.  He also tells me all about it proudly.  

Jason is changing day by day and so is his vocabulary.  We can't help but smile from the things that he comes out with.  Our two biggest struggles with Jason are potty training is taking forever and he likes to beat up his sister. Even though Laura is going on ten years old, he still tries to kick, push, bite and anything else to her.  She is very patient and forgiving but it still is a tough situation.

I know we will survive each stage and make it.  It just takes love, patience and discipline. We will survive. 

 J

Thursday, July 7, 2016

Be the light in the darkness

Life can be a struggle. I feel angry when there is a lack of compassion to anything and anyone alive. My mind can't wrap around it, and all I want to do is ask why? But asking why is like asking a three year old why they did something naughty. The answer makes no sense because usually they don't even know.

All I can say is complaining isn't helping. Nearly all of social media is complaining.  The news makes matters worse instead of better to increase their ratings.  Higher ratings equals more money.  We need to take a different approach if we really seek change.

Stop the complaining and do something-anything-nice for a person, an animal, a community.  It doesn't matter what it is, it only matters if you do it. Saying you'll do it next week, next month or next year doesn't count.  Do it today and everyday.  We live for now and we die later.

The simplest acts are the ones that matter the most. Smile more, compliment more, be present, and be kind. Stop looking for the bad in everything and only talk about the good.  Let's bring back the good day by day and step by step.

Yes, bad things happen every minute.  But we can't help something that's happening that we have no control over. We can't help all the starving people, but we can feed a few.  We can't end all child abuse, but we can be nice to children and show kindness. We can't care for every homeless animal but we can donate things to shelters. We can't stop every baby dying in abortion, but we can help women who are pregnant that need support and their babies supplies.  We can't help those who choose to kill with guns, knives or any other violent ways, but we can stop sensationalism violence on Facebook.  No need to draw more attention to hate unless you're being proactive to help the victims. 

Life is short.  Some of us die before being born and some are lucky enough to live past 100. Live wisely and love abundantly. Make each second count. You're the only one in control of your actions. We can and will change the world if that's what we choose.