Wednesday, December 7, 2016

Family update

I realized that it's been way too long since I wrote about the little details about what is going on with our little family.  I've been very busy writing for my weekly columns, writing my book and raising two human beings.  Jeff now works the afternoon/evening shift since October.  It's been a huge adjustment for me and the kids. Bigger change than  what I thought.  I am happy he's doing something that he likes, and this shift won't be forever.

For me, I technically only have a break in my day when Jason naps. During pre school hours, I'm off doing errands, grocery shopping or writing.  I do miss when six or seven comes along and Jeff would take over completely and I'd do whatever I wanted until we both hung out after the kids went to bed. I miss him. We see each other during the day, but I'm busy with things and my attendant is here. When he gets home, I'm lucky if I can say a sentence I'm so tired. But we text and try to spend as much time as we can squeeze in.

It's exhausting being nonstop as any parent especially single parents knows.  Luckily, Jason does get to see him everyday since pre school is only a few hours three days a week. Laura can go five to six days without seeing him. They often text at night and she likes that a lot.  I do have a couple hours of help with dinner and getting ready for bed which I fully appreciate. Bed time can vary for the kids but usually they are both in bed by 9:30. 

Laura is doing very well.  Her grades fluxuate on the high end of honors and high honors.  I can't complain, and we study together each night.  She is playing clarinet and doing very well.  She is diligent with practice.  At first, I thought I'd lose my mind, but she needs it and I can see huge improvement.  Her concert is next week.  I always have guilt that I don't spend enough quality time with Laura because Jason is demanding at night. However, we do make the time whenever possible.  We love to shop together and watch certain shows.  Laura is very supportive of me being the only parent. She listens to me and takes my advice.  For that, I'm forever grateful and blessed now she's ten with a bright social life.

Jason loves going to pre school.  In fact, he would love it if it was seven days a week! I hope his enthusiasm to school stays with him.  At home, we've been working on letters, numbers and their meanings. He can spell Jason on his own and almost count to twenty without a mistake.  Even though his attention span is short, he learns and remembers amazingly well.  Unlike my daughter, Jason doesn't listen to me too well and would rather do things the extra hard way sometimes than taking my advice. But sometimes there are glitters of hope like letting me verbally direct him with a shower and getting dressed etc. He's been potty trained since September but needs reminders.  

Laura and Jason love music. Jason loves to play the Star War Theme or Hall of the Mountain King and just dance like crazy. He calls it rock it out.  Laura loves to sing and dance.  Jason sings nursery rhymes and some Christmas songs.  

Our lives are always on the go, and I'm perpetually tired but I wouldn't miss a moment. During the craziest moments when the living room is torn apart (again), kids are yelling, laughing as dogs race and I feel like I'm going to lose it, I tell myself one day I'm going to miss it all.  I don't regret anything though and love each second of raising my kids. 

 

Think Before Speaking to Someone with Cerebral Palsy

Today I had to walk home from my car repair shop because my brakes need to be replaced. As we were walking, my friend asked me why do people look at us strangely when I'm just walking in town?  I stopped noticing any obvious stares and live my life. However, it does make me wonder why people say and do when they notice someone different.

In my forty one years, I've learned to not let everything bother me when treated differently. However, there are some moments that stand out more than others.  I realize that it is natural to look at people you may not understand or just curious. Curiosity is natural to human nature. 

When someone says something about cerebral palsy out of the blue or says something about it totally unexpected, it takes me off guard. I know that I'm not alone when I say that people need to think before they speak. My only wish is to have a witty comeback after this happens. But I normally think of one as we walk away from each other. 

Here are some of my favorite situations where someone has said something completely unexpected.  I have plenty of stories, but these stand out the most

1. Doctor Express is an alternate place to an emergency room or you can't quickly get an appointment at your regular doctor office. I needed to take my daughter because I thought she might have an ear infection. At Doctor Express, after having Laura see the doctor and on our way to check out, I felt the doctor tap me on the shoulder. I turned to look at him and he says, "You're so brave!"  I told him thank you, but I really wanted to say was, "Really? For what? Laura is sick - not me."

2. As a writer and teacher, I educate people about cerebral palsy all of the time.  There is a time and place for that, and it's usually not a family gathering or party.  When people say, "I'd like to know more about your disease," I always need a second to think.  What I normally ask is what do they want to know.  But what I actually want to say is, "First of all, cerebral palsy isn't a disease. I have a disability.  I will be glad to educate you, here is my business card." 

3. Motorized wheelchairs seem to fascinate people.  Any place and any time. I can hear from a stranger, "Let's race!" or "Do you have a license for that thing?" Or, "How fast does that thing go?" Now to some, this might seem like a harmless joke.  I usually smile and a forced laugh. But I'm feeling irritated inside because I am trying my hardest to fit in and be myself. But you come along to remind me that I'm not.  My wheelchair isn't a car. It is my freedom and extension of me.  I really could not care less how it goes as long as it gets me where I need to be.

4.  It's rather sad to say how happy I feel when a stranger acknowledges my children are in fact mine.  They've been mistaken before as my siblings or friends. Then I am asked, "Are they really your kids??" I simply smile and nod.  But I really want to tell them is that I am more than capable to be a mother and I have the most amazing children in the world.

5. Since I've had cerebral palsy my whole life, I have no idea what it feels like to not have it. I simply cringe inside when I hear, "I can't imagine not being able to control my muscles. I think I rather die." I'm not sure why anyone would think that this is okay to say to me.  I'm very much happy to live and be here.  Sure, I feel frustrated when I can't easily do something, but everyone does. We all have strengths and weaknesses, but we are all people inside.

Please think about this article the next time you feel the urge to "race" someone in a wheelchair. Think about what they're really thinking behind the polite smile, and just ask, "How are you?"

Monday, November 28, 2016

Being thankful for cerebral palsy

Thanksgiving brings to mind several memories and feelings.  Many think about family, friends, traditions and food when Thanksgiving rolls around. Being thankful is the most common activity we do on Thanksgiving. Being grateful for what we have keeps us being optimistic in a complex world. Having cerebral palsy can sway someone to complain and concentrate on all the things missing in their lives. However, despite having cerebral palsy, there are many reasons to be thankful.  

Be thankful for improved medical knowledge and advances.  Medical conditions have improved immensely for babies who have disabilities. In the last one hundred years, babies who were born with disabilities often died due to lack of medical technology and medical knowledge.  In the last forty years, the survival rate for babies born with a disability has increased tremendously.  Babies and young children can get physical, speech and occupational therapy to help improve their quality of life. The medical outlook for people who have disabilities are looking bright and beautiful compared with years ago.

Be thankful for the amazing technology and assistive devices that are improving on a daily basis. Technology is absolutely amazing for anyone who has a disability, but especially those with cerebral palsy. Cerebral palsy affects fine and gross motor skills in both our hands and limbs. Lack of these motor skills contributes to lack of being able to write, talk, walk and other daily living activities. Ereaders, such as Amazon Kindles, helps someone with dexterity problems read books because holding a paperback book is impossible.  Tablets help us write, communicate, bank, shop, work, socialize and many other activities very easily.  Computers and laptops have also came a long way in assisting independence. 

Be thankful for the improved education system that includes all hopefully as much as possible. Education has definitely came such a long way for those with cerebral palsy. No longer are we pushed into one classroom at the back of a class. Children with cerebral palsy are included as early as pre school. Colleges as well are much more open to admit students with disabilities. Teachers are better educated in helping students with disabilities and finding better ways to teach. Students are more open to accepting friends with disabilities. Even school sport teams and student organizations are inclusive to differences.

Be thankful that employment is increasingly more accessible to those with cerebral palsy than ever before. Jobs are steadily becoming available to those with cerebral palsy both online and offline. When looking back during the last fifty years ago or  so, you will quickly notice that hardly anyone with cerebral palsy being hired. Now it is much more common when you compare the past to the present. Unfortunately, hiring people with cerebral palsy is far from perfect and the job market still has plenty of work to do. But as a whole, getting a job or starting your own business has become more obtainable.

I am thankful for having motorized wheelchairs that can be made to the customizations you heed. My motorized wheelchair allows me to be comfortable and independent.  I'm thankful for personal care services that allow me and many others live healthy, independent and dignifying lives.  I am thankful to be married and have children because having a family wasn't always easy to achieve with cerebral palsy. I am thankful for my friends and family who support plus love me despite my challenges.

The next time that your spasms are out of control or someone is giving you a difficult time about your speech, try to think of everything to give thanks for. Those with cerebral palsy who lived hundreds of years ago would love to have what we have now. So smile, focus and continue to live your dreams.

Sunday, November 6, 2016

Monday, October 31, 2016

Dating and dancing with cerebral palsy

Dating and relationships are something that many people want in life.  But with a disability such as cerebral palsy, dating can seem an astronomical task.  I have athetoid spastic cerebral palsy which can lead to some challenges socially and romantically.  However, at a young age, I  set a goal to have a happy marriage, and I don't give up on my goals. 

Last night I remembered how difficult it can be to be single and have cerebral palsy.  My husband and I went to dinner and dancing.  With two children and jobs, finding time to have a date night isn't easy. Prior to have a second child, we used to go dancing every weekend. I forgot about the self conscious feelings that flood you when you're the only one in a wheelchair at a popular crowded bar.

My friend from middle school is now a lead singer in a band, and he played at a local bar in town.  As I drove my wheelchair to get closer to the stage, I felt aware of the stares.  I shook it off.  My husband and I picked a spot to watch and not be in the way.   Before the band played, my eyes searched the room. I saw some awkward people and those trying too hard to impress others. People walked past me with the sympathetic look, the annoyance look of my chair being there, confused looks and surprised looks.  I saw some pointing and whispering as they looked in my direction.

I'd lie if I said it didn't bother me.  All I ever want is to fit in socially like most of us do with cerebral palsy.  I tried to get myself together as I gave my husband a smile.  I didn't want to ruin tonight because of my self conscious feelings. When the band started playing , I scanned the room again and saw a guy to the right of the stage.  I pinned him as stuck up, but you know what? I was wrong.

As the night went on,  I started to move my wheelchair to the music.  I actually love dancing, and I do the best I can without standing.  I always feel self conscious when I start dancing because I know many have never seen or thought someone in a wheelchair can dance.  Usually, I dive right in, but since it has been awhile, I started slowly.  

To my surprise, the guy that I had thought was going to be snobby, danced to the right of me. My husband danced on the left. The first set went well as I loosened up.  I dance with moving my motorized wheelchair or with my body as I sit.  I usually do a combination depending on the song, space and song.  Even though I still noticed the stares, they didn't matter as much.

The band took a break before the second set, and we rested with drinks.  I told my husband that people drive me crazy because they give me the look.  He told me to not worry about what others think.  He said that when I stop concentrating on my cerebral palsy and just have fun, others will do the same.  Ironically, a girl came up to Jeff and said what a cute couple we were and she enjoyed watching us dance.  As she walked away, we both laughed, and I heeded his advice.

Then suddenly after I stopped focusing on my cerebral palsy and just had fun dancing, I wasn't dancing alone.  I was dancing with my husband and two other guys.  We were all having a great time as just people having fun.  Nothing seemed to matter, but just having fun and being in the moment.

Later on, one of the guys asked Jeff what our relationship was and Jeff said we were married.  The guy apologized if he was dancing with me inappropriately and told Jeff that he was lucky to have me!

The point of this experience is that sometimes we hold ourselves back by overthinking our own limitations.  We have cerebral palsy but behind every spasm, speech impediment and wheelchair is a person.  Show others that person and things will easily fall into place with the right person.

Lumpectomy woes and triumph

I needed to have a lumpectomy on my left breast.  Again, my doctor felt confident that this would take care of the cancer, and I would need to take tamoxifen to prevent it returning. As much as I didn't want to undergo another procedure, I wanted this saga to end.  I scheduled the procedure for the week before my son's third birthday.

Having breast cancer felt incredibly strange to me.  When I looked in the mirror, I looked fine. I felt fine despite a bout of sinus infections that I had around the same time. But nothing felt like I had cancer  I knew that I cancer grew inside me, and that made it difficult to see the bright side of life.  

At this point, I hadn't told many people about my diagnosis. My family knew but not much of anyone else.  I decided it was time to be open about it.  I wanted to educate others that mammograms weren't just there to torture women and make facilities rich. They had a purpose, and it had saved my life. I, especially, wanted my friends who also had disabilities to go get a mammogram.  Many women with disabilities die because getting a mammogram can be troublesome.  However, they needed to know that they weren't invincible. 

I felt overwhelmed by the tremendous amount of support I received.  People were praying for me and thinking about me from all over the place. I received cards, flowers, and balloons. Around Valentine's Day, my uncle drove to my house on a very cold day just to give me roses from him and my aunt.  I felt so touched.  

Most importantly, I heard from family and friends that they had scheduled their mammograms. One of them was my sister. Hers needed a second look but thankfully she didn't have cancer.  I plan on to continue encouraging everyone to get mammograms. The earlier cancer is detected, the easier it is to eradicate the cells.  

As far as my daily life, everything continued even though I wished there was a pause button.  My husband was still in nursing school so I helped my daughter with homework, cared for my son, housework and writing.  Sometimes I felt like I didn't have time to process. Whenever we did watch TV as a family and a cancer commercial came on, we were somber.  These commercials didn't mean a lot to us before but now they meant everything.  And, often at the end of the day, I collapsed in bed, looked at my husband and say, "I cannot believe that I have cancer!"

On the morning of my lumpectomy, a feeling of excitement washed over me.  I wanted to get rid of it and couldn't wait.   My husband gave me a button down shirt because they told me to wear one for making dressing easier. It was a very cold morning and we left early. The lumpectomy is an outpatient of procedure so I knew that I'd be back in a few hours. 

Getting the lumpectomy went much smoother than the biopsy.  I was familiar with the doctors and anesthesiologists.  They remembered about my increased heart rate after my biopsy and knew how to control it.  Everyone seemed sad that I came back since they found cancer but happy to help me now.  Recovery afterwards seemed so much easier.

I had bruising and a scar, but all that would fade.  I felt a little sad that I had a scar, and my left breast was a bit deflated. However, the pain seemed far less than the biopsy.  All we needed now were the results, but that wouldn't be yet.

A few days later, my daughter had her first spelling bee on my son's birthday. The day after that we had a big birthday party for him.  Everyone told me they were surprised how I good I looked and shocked that I didn't postpone the party.  It truly was an excellent weekend!

On the Tuesday after the party, my son just went for a nap and I started my to do list. Then the doctor called, but he didn't sound happy. My heart sunk and my hands shook when he told me that the cancer wasn't gone.

Originally posted on Breast Cancer News by me

Tuesday, October 25, 2016

Fall fun for those with cerebral palsy

October is the start of fun holiday events and celebrations as we enter the end of the year.  Having cerebral palsy doesn't mean that a child or parent with cerebral palsy can't participate in the Halloween celebrations. Modifications, research and planning ahead will make Halloween not only possible, but enjoyable for all family members.

When I was a young girl, Halloween seemed more challenging to me than fun.  Finding a costume that stayed on me would be the first task.  My involuntary movements from cerebral palsy made getting the costume on more difficult. Then the question would be where would I trick or treat? In the early eighties, accessibility and inclusion weren't factored in Halloween fun like it is today. We never heard of trunk or treat or malls having trick or treating.  The sidewalks around my neighborhood weren't the best for my wheelchair to navigate.  Plus, my dad had to carry me to neighbor's doors so there wasn't any mystery to who I was.  It took the fun away from Halloween.

I decided to give up trick or treating and hand out candy instead.  My brother and sister would share their candy with me so I never missed out on candy. However, I wished that I could participate like any other kid.  Now times have changed and Halloween can be made much more accessible for everyone.

First, let's talk about costumes! I'm very impressed with the creativity Halloween costumes are for children who use wheelchairs.  Instead of singling out the wheelchair, people are incorporating their wheelchairs into the costume.  If you do an Internet search on costumes with wheelchairs, you'll find several terrific ideas.  Wheelchairs, braces and walkers do not need to be seen as a problem, but as an asset to costumes.

One year, my mom and sister took a big cardboard box that would fit over my wheelchair. They decorated the sides of the box as a jungle scene.  I wore a monkey costume so it looked like I was a monkey living in the jungle.  I will always remember that year because I felt like I fit in like my friends.

Second, there are many other places that allow trick or treating.  These places are accessible and makes an equal area for everyone.  Trunk or treating is where people decorate their car trunks and hand out candy. Usually, you can find local trunk or treating at churches, schools and some organizations.  Malls also have trick or treating that is open to children.  Two reasons that this is a good idea. Malls are accessible and you don't need to worry about the weather. Being out in the cold is not easy for someone with cerebral palsy. Muscles are tighter or become more spastic.  

Third, it's more common to see schools offering safe trick or treating open to the public.  Some places are doing Accessible Halloween.  I'm happy to say that I learned about Accessible Halloween when I played in the national power chair hockey tournament this past summer.  A new friend told me that she had created Accessible Halloween in her area and it was a success.  I took the idea, with her blessing, to my local YMCA and they agreed to have it.  Accessible Halloween is focused on children with disabilities to trick or treat, participate in crafts and games!

Lastly, don't forget baking and crafts are also a big part of having Halloween fun.  Several crafts can be modified to people who have cerebral palsy.  Even though a child with cerebral palsy can't physically bake, they can read the cooking instructions and you can assist them do certain tasks. Patience, creativity and experimentation can lead to a very fun and memorable Halloween.

Learning about DCIS breast cancer

The Friday that I learned that I had breast cancer seemed like the day that wouldn't end. I found out early in the morning by a phone call which led to a day of confusion and shock.  When my husband returned from nursing school, we sat together in disbelief. My mom called the oncologist to try to learn more information about my cancer. Since she has a firm understanding of cancer due to being a clinical researcher, she's better at understanding all the technicalities than me.

My mom explained that I had the best type of breast cancer.  It sounds ridiculous to say because all cancer is bad, so how could there be the best cancer? The cancer I had is called DCIS.  It stands for ductal carcinoma in situ.  DCIS is the earliest form of breast cancer in the milk duct, and it doesn't spread.  The problem with DCIS is that if you don't take care of it, the cancer becomes stronger.

I felt better knowing it wasn't the worst case scenario, but there were still a million questions, worries and fears.  Luckily, my appointment would be Monday morning but, unfortunately, I had to wait. I also knew at this point, I had no choice but to tell my nine year old daughter.  I dreaded this the most and tears filled my eyes.  She knew enough about cancer that not every ending is happy. I hated to put this stress on her. My son is too young to really understand cancer.

My daughter, Laura, spent the night at my Dad's house Friday night.  I wanted a night to settle the news in my own mind and emotions beforehand. On Saturday, my husband kindly took me to places that I never had been before. He did this to keep my mind distracted and have a little fun.  I enjoyed our day despite the breast cancer news looming over our heads.

Shortly after we came home, Laura arrived.  I'm open and honest with my daughter, and I never had any problems telling her anything.  But telling her that I had cancer seemed unbelievable and overwhelming.  I had to tell her despite my feelings.  I prayed that I would use the right words so she understood but not be fearful. To my surprise, I told her and she took the news much better than I could imagine. I knew that she was in shock like we all were, but still it could've went much worse!

For the remainder of the weekend, we did our normal routine as much as possible. I'm a third grade religious teacher on Sunday mornings so I taught like I normally do. My feelings were very conflicted.  On one hand, I felt extremely relieved that the cancer I had was treatable and easy. But on the other hand, anything could happen and what exactly treatment awaited me.  I assured Laura that I would tell her everything and we would be in this together.  I also told her that she shouldn't hold her feelings in about anything. She gave me the biggest hug and kiss ever before going to bed that night.

My husband couldn't go with me to my appointment because of school. We decided that there will be more serious appointments and hospital stays that I will need him so we should use his vacation days wisely.  My mom and sister came with me as we faced the demon called cancer together.

The oncologist apologized about the diagnosis but I thanked him for pushing the tests so I knew I had cancer.  Other doctors might not have been as persistent since images were blurry and the areas were small. I thanked him for basically saving my life. If we waited another year, the cancer would be much worse and who knows what the outcome could've been!

My oncologist described everything the best way he could. I understood exactly what I had and what needed to be done.  The next step was to get a lumpectomy to take out the DCIS and we talked about a medicine called tamoxifen which prevented breast cancer from returning. I would most likely start that after the lumpectomy.

We now had a plan in place and ready to get rid of the cancer!

First published on Breast Cancer News Today