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

Biking with my children

Last Christmas, Jeff bought Jason a balance bike. They are bikes without pedals to teach your child how to balance.  He wasn't quite into it at two years old. However, when Jason turned three and the weather became warmer, Jason caught on quickly.  Now he's a little pro on his balance bike.

Jason and I have a little routine that we both look forward to. After lunch, I take him on a bike ride around our neighborhood. It's a good way to exercise, get fresh air and spend time together.  We both like it. I like hearing his comments about different things. Now Halloween decorations are up, he tells me all about it.  He especially likes a house that has a giant blow up cat, pumpkin and hearse. They also have a giant black spider on the house.

This past summer there was a piece of the sidewalk that had sunken in. He would always tell me to be careful as we past it. They fixed it and now each time we pass it, he asks me if I like the new sidewalk!  I soak these moments in because in a few short years, Jason will be in kindergarten all day.  I love our conversations.

Laura has always wanted to ride a bike.  I gotten her many bikes and we have tried. Jeff tried, my brother and dad had all tried to teach her, but with no such luck.  On her tenth birthday, her uncle texted me about getting Laura a bike.  I explained that maybe he could try to teach her. He surprised her with the perfect size black and pink bike with helmet!

He came every week for about a month to teach Laura. Just like that it clicked!  She can now ride. The first time I watched her, I was in disbelief to what I was seeing.  Laura had such an amazing smile and so proud of herself. I am so grateful for her uncle to teach her.

Thursday, October 6, 2016

Potty training tips

Every child is different. Whenever a parent potty trains their child, everyone seems to have an opinion, experience or idea.  Laura was easy to potty train because she was mentally ready and enthusiastic.  Her body wasn't quite ready and that was the hardest part. Jason wanted nothing to do with potty training.  At first, he seemed a bit excited but it was short lived.

We tried everything!  By the time he was three and a half, I felt determined to potty train him before he went to pre school. I knew that he could use the potty, but I had to get him there.  While looking up techniques online, I stumbled on the Three Day Potty Training site. Her video enticed you but the online book seemed way too expensive.  I thought if I had to spend the money, it'll be worth it but I checked out Amazon.  Low and behold, it was a lot cheaper so I bought it for my Kindle.

I read the book within about twenty minutes.  And, the method is so simple and made complete sense that you're left thinking- why didn't I think of that?   I discussed it with Jeff who agreed it sounded like a great idea.  We couldn't start immediately. We had to buy incentive toys, small rewards, marbles and lots more underwear.  I also started on a Monday and week that I knew I could give complete attention to training.

Long story short- it worked wonders. It took him a little longer than three days but paitience, consistently and kindness got us through.  Below is the method we used, and I hung it in our kitchen for everyone helping Jason. Best tip I know is don't use pull ups - they slow the process.  If we didn't use them, I bet Jason would've been potty trained so much quicker.

Three Day Potty Training 

Monday to Thursday but might be longer 

We need to not go anywhere with Jason for three days. No errands etc.
Monday morning - he throws away his pull up and then together, we gather all of the pull ups and diapers in the house,car and diaper bag to donate for other families.  He helpsand we tell him that diapers are for babies and Jason is a big boy.
Jason wears underwear and comfy, easy clothes.
We show Jason a new toy that he wants on the counter and a small jar with marbles. When he uses the potty, we let him put the marble in the jar. When the jar is full,  he gets the toy.
When Jason seems to begin an accident,  take him to the bathroom ASAP. 
Never be negative. If an accident happens, we simply say, "Jason, remember to tell me when you need to use the potty."
He can get stickers after using the potty..
Our job is to watch Jason and recognize signs of needing to go. We never just sit on the potty to try because that frustrates him.
If he resists sitting on the potty, then just get him into the bathroom.  Never use force or sound mad.  After awhile, he will get comfortable.
We push liquids to get him to go. We want him to go lots so he practices and learns
He should go before and after nap. Hold back liquids before sleep.
The biggest key is never show frustration or anger. Only praise!!  Even if he has 20 accidents a day.
For going poo, he will receive a "magic wand" to hold when he sits and it won't be scary.
Jason can and will do this! We just need to keep positive, focused and be with him!


How society views people who have cerebral palsy

Have you ever had a day when you forget that you have cerebral palsy? You simply wake up, do your normal routine and don't even think ab...