Thursday, December 15, 2016

December is a happy time in a crazy world

December is my favorite month of the year despite the cold.  This December has been no different, but unfortunately, I've heard of some people dying unexpectedly.  My heart goes out to their family who is missing them especially around Christmas.  God has a way of planning even though it's almost impossible to understand.  I used to wish that in December no one would die. But can you imagine how terrible January would be? I guess He does have a plan for everything and everyone.

Jason and Laura are very excited about Christmas.  Jason is full of the magic in Santa Claus and just beginning to learn about Jesus.  Laura is in the spirit of giving to others and learning more deeply about Jesus. Both stages of maturity are wonderful in so many ways. We decorated our inside and outside of our house. Jason loves looking at everything while Laura does the decorating now.

Last Saturday we bundled up and all went to pick out our tree.  Jason thought it was the best thing ever especially when they tied it to our van. We went to two places, and found the perfect tree right away at the second spot. Laura enjoyed hanging ornaments after Jeff set it up and did the lights.  Later on, we went to the Christmas Village which is about an hour away and filled with millions of Christmas lights. Jason was taken back by a huge lit up Santa Claus. We were freezing and surrounded by hundreds of people, but we had fun and made memories. On our way home, we stopped for pizza and all enjoyed ourselves.

Jason had an ear infection right after Thanksgiving. He was on antibiotics but unfortunately it came back on Monday. Now he is on a stronger antibiotics and hopefully it'll cure him.  Nothing worse than a sick little boy.  He's a fighter though and brave. Even when he hurt the most, he handled it with grace. 

Last night Laura performed in her first band concert. She plays clarinet and does outstanding. Luckily, my friend could watch Jason so I could go.  Laura dressed beautifully and looked amazing. My neighbor always finds the best dresses for Laura. She looked stunning. We had to get there early because she was nervous.  I'm glad we did since we found perfect seats with a great view of Laura. The band played excellent for elementary and choir was wonderful. 

 
 

12 Gift Ideas For Someone With Cerebral Palsy

Do you have a person who has cerebral palsy or a physical disability on your holiday shopping list? Are you lost in what to buy them that will be helpful, and they would also enjoy? I have compiled a list of items in which I believe someone with a disability would like to receive.  But like any gift, keep in mind the person receiving and follow your heart and instinct. Not everything you give needs to be disability related.

Kindle - I love to read, however, holding a book is extremely difficult due to my dexterity.  Having a kindle has opened reading books to me like never before.  I like to read in comfort and independence.

Kindle case - If you know someone has a kindle, consider purchasing a kindle case. Kindles can be a challenge to turn on and off. My husband bought me a durable case that turns on when you open it and turns off when you close the case.  I absolutely am thrilled by the independence it has given me.

Massage gift certificate makes a great gift for people with stiff and spastic muscles. Massages help someone relax and have better movement for awhile. Please research to see if the massage place is wheelchair accessible beforehand or it will be a waste of money and time the person going to get the massage.

Pants that look like good but are easy to get on and off like leggings. If you're shopping for a woman, a good pair of leggings is an excellent idea especially paired with a shirt that matches.

Money is a great idea for someone on disability. Disability checks aren't very high and living off that money is not easy. So, having some extra money is always welcome.

Gift cards to places like Amazon are a huge help to anyone.  More and more people are using online shopping and the convenience is wonderful especially if you can't drive.

Heating blankets or wraps are welcome to someone that has difficulty with muscles or tight muscles. Heat helps calm muscles and relaxes.  Look for ones that are easy to turn on and off.

Homemade coupons offering your services. When you have a physical disability, you tend to feel bad asking for help and often don't ask. If you offer services such as lawn care, organizing closets, trips to the movies, trips to stores, carpet cleaning, basement organizing or help with pets are always welcome! Having the coupons takes pressure off from feeling bad for asking your help.

Anything soft is excellent for people with cerebral palsy. Feeling softness on the skin or in the hands not only feels good but good for therapy. Blankets, fuzzy socks, pillows, sheets, towels, slippers, mittens, hoodies and pajamas would all fit in this category.

Technology offers wonderful opportunities to people who have disabilities.  iPads, iPhones, remote control lights, apps and anything offering ease of independence.  Consider an iTunes gift card as an idea.

Visiting or offering to go to places is a perfect gift.  Going places can be a challenge if someone doesn't drive so if you offer to take them, it takes the stress off them asking for rides.

If you feel compelled to purchase a pet for them, please ask first. They might not be physically capable of taking care of a pet. So, discuss the pet first before purchasing.

15 Gifts for People With Breast Cancer

Holidays are fast approaching and so is buying gifts! If you have someone who has breast cancer or even a breast cancer survivor, you might be deciding what would be a good gift to buy them.  I complied a list of ideas that I think will hopefully inspire you to find the right gift for your family member or friend.  But remember to keep in mind their personality before everything else as you pick their gift.

Comfy clothes are a great idea for someone recovering or undergoing breast cancer treatment. Big hoodies and flannel button down fashionable pajamas are welcome. Fuzzy warm socks are also wanted and welcomed.

Moisturizers are a good gift idea because treatments can leave skin dry and itchy. Having a good moisturizer can make all the difference in the world.

A kindle is an excellent present for someone undergoing treatment or recovering. Reading is a great distraction from upcoming appointments, procedures and tests.  Kindles are also small enough to fit in a purse or bag to transport.

Word search books, crossword puzzles or any games that can be used for fun and as a distraction.

Candles and candle holders are welcome.  Nothing like a beautiful smelling candle to have in your room when you are trying to relax and heal.

Gift cards to grocery stores or any store for that matter just to help take some financial burden off the family.  Cancer isn't only miserable but also terribly expensive so any help is appreciated.

Speaking of gift cards, gift cards to clothing stores are excellent because clothing doesn't always fit or feel the same as it did prior a mastectomy especially a double mastectomy.

Home made gift certificates offering your assistance in services such as cleaning the house, cooking, gardening, help with child care, help with pet care, running errands and such will be a welcome help. No one likes asking for help so having these home made offers relieves stress. 

Heating pads and blankets are appreciated especially as we approach the winter months. When I recovered, I relaxed on a recliner and wrapping in a blanket helped me feel even more comfortable.

Inspirational breast cancer awareness ornaments, cups, shirts, earrings and just about anything is good for a breast cancer survivor. As I was going through cancer treatments, I didn't appreciate the pink ribbon as I do now. Now when I look at breast cancer awareness merchandise, I don't get a pit in my stomach. I look at it and actually smile that I had cancer, went through it and am still here.  

ITunes gift cards and anything with music helps the survivor and the person going through breast cancer.  Music carried me through just about all the seasons of cancer. Songs helped me through finding out, biopsies, lumpectomy to mastectomy. When I hear certain songs, I have a memory attached to the song.  I will always carry these memories with strength.

A day at the spa to get a massage, nails done and whatever else to make them feel wonderful makes a terrific gift.

For women and men dealing with cancer, adventures and helping them do things that they have never done before.  A chance to drive a sports car, amusement parks, the beach and whatever they wish to experience is so important. 

Movie gift cards are fun and a well needed distraction.

Hugs and visitors from family and friends are unmeasurable. Knowing that you are not alone and people have your back can lift your spirits and hope.
 

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

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!

 

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.
 

Monday, July 4, 2016

What it's really like to have cerebral palsy?

Anyone that has a disability can usually tell you what it's like to have their particular disability. But there are things that people might not know because talking about every little detail about your disability can be a daunting task.  I have cerebral palsy, and there might still be things that even my husband might not realize.

1. I love holding hands and cuddling but my body often times will not allow it. For some reason, my body becomes very tense when someone wants to hold me in any form. This can be very frustrating for yourself and partner when you're trying to cuddle or hold hands.  Often I need to hold my breath to keep my body still so I don't move.  It's frustrating for me because I love cuddling and holding hands but my body says no.

2. I do have a great bladder, but I still need to use the bathroom. Most people forget that you do need to use the bathroom even though it can be difficult to get to one.  I hate asking to use the bathroom even when I really need to because I know it's not easy to take me. So, I often hold it in pain and politely refuse to drink until I can get to a bathroom.

3. Yes, I like to be independent but help is appreciated when offered. When I'm on the floor, I can do many things on my own which is terrific. But sometimes in doing so, I get tired out or I hurt myself daily.  I'm not being lazy when asking for help.  I'm just trying to be nice to my body.

4. Even though I can't get my own food doesn't mean I'm not hungry.  Not being able to feed yourself is as frustrating as not being able to use the bathroom yourself.  You still feel hungry even between meals. Comments on the amounts you eat or drink aren't necessary because you're helping me. No one analyzes how much you eat or don't eat.  So, please when I ask for a second helping, no need to comment to make me feel bad.

5. My muscles and bones ache on the daily.  I'm never going to complain about every ache and pain I have but that doesn't mean that they don't exist. My body moves 24 hours a day 365 days a year. Even when I "relax" my body moves. Constant moving wears on your muscles and bones.  So, please don't put on a guilt trip when I don't want to be in a manual chair or do something that might make me more sore.  Certainly invite me and ask but if I say no, please understand why.

6. Yes, my children help me with some things, but no I didn't create them to be my personal attendants. Like any kid, my children help us out. I believe helping each other is a normal family action. Yes, you might see my toddler pick up my cellphone if I drop it in a store. You might see my daughter getting out my credit card so we can make a purchase.  However, you won't see them cooking meals, dressing me or other things directed to my care. Once in awhile you might see them feed me or give me a drink. But also know that I'm helping them as well like any parent would. My children know that we help each other because that's just what decent people do.

7. I am lucky to have my husband, but not because he accepts my disability.  Not to sound snobby, but I never had difficulty getting asked on dates or being in a romantic relationship.  Many guys accept my disability and would want a relationship with me.  I'm lucky to have my husband because he's funny, kind, considerate, handsome, likes to have fun, responsible and a good cook.
 


Laura's first Phillies baseball game

On Saturday, we had the fortunate experience to take Laura to see her first Phillies game. Back in October, a friend won tickets and he gave them to us.  We almost took Jason too but we knew he wouldn't be able to sit through a whole game.  I was lucky enough to have a friend of mine babysit him.  Jeff's dad also went with us which made it great for Laura because he taught her things about the game that I didn't even know.

Laura seemed rather nonchalant about going. She thought that she might be bored, but she got all dressed for it. I told her that many people do not even get a chance to attend a game. I said to her to take in the whole experience, and it'll be something that she'll remember always.

Citizen's Bank Park is only about a forty five minute drive, but traffic makes it a lot longer.  We arrived early though and parking in accessible parking was a breeze.  As we pulled up to the stadium, I could see that Laura's excitement grew. She sat up taller, looked around and asked questions. Laura kept saying that she couldn't believe that she was actually there!

Laura and I walked to our seats and as we did we saw hugs pictures of baseball players. We enjoyed saying their names. Luckily, we had terrific seats at the 100 level.  Laura was in awe about how close we sat to the baseball field.  Jeff took me to a family bathroom, and we were pleasantly surprised how big and clean it was.  No problem of accessibility at Citizen's Bank Park!

Since we were early, we walked to a store.  Laura really wanted a foam hand that she could put on and cheer the team on.  At first, we said no because it seemed expensive for what it was. But then I thought if this is something really important to her and will remember the rest of her life, it's worth it.  I bought it and she was very happy with it and used it throughout the game.

For being a July game, the weather couldn't have been any better.  It was overcast, light breeze, low humidity and comfortable.  It could've been so much worse!  Laura was engaged the entire game and not once complained about anything.  She ate a pulled pork sandwich and loved it. She also gave me plenty of hugs and kisses! I had the biggest hot dog of my life and could barely eat half.

Unfortunately, the Phillies lost but after the game, there were fireworks! Again, you couldn't have had better seats or weather. The fireworks were amazing and went great with the music.  It was no problem getting back to the van.

The next day Laura told me that it was the best night of her life!!! Thank you Philadelphia Phillies!
 

Sunday, July 3, 2016

Bumble Bee playskool transformer

Jason has loved cars since he was four months old. He had a car rattle toy which he loved and things just developed from there. A few months ago, he found a big sturdy Optimus Prime transformer at Good Will. Then he loved transformers!

In May, I found the transformers brand made from Playskool.  I purchased the yellow Bumble bee transformer for him and he loved it then and still now.  He carries it with him everywhere.  I like how well it is made and excellent construction.
 

Jason can transform the car on his own. Playskool made it easy for little ones to transform the car to robot by themselves.  I only recommend toys that I can stand behind.  I strongly recommend this Playskool transformer for a child age 2-5 years old.


Saturday, July 2, 2016

Shopping with Laura

When I learned that I was having a girl, my heart felt beyond thrilled.  One activity I looked forward to was shopping with her when she grew. Now that she is nine, Laura and I are definitely a great shopping team!

This week we went to King Of Prussia Plaza.  We enjoyed the Primark store where they have an excellent collection of clothes and some home goods for great prices.  I enjoy just sitting back and seeing what clothes interest her. One thing that I learned from being a mom of a daughter is to keep comments to yourself.  

For a long time, I would push pink on Laura because I liked it.  Then for the longest time, Laura said she hated pink. I always suspected that some of that was to spite me or seek her own independent style.  So, you can imagine my delight when she mostly picked out pink clothing.

Laura picked out a pink dress, pink shirt, pink hoodie, pink sandals and accessories! I tried to act as cool and nonchalant as possible without shouting, " You look awesome and beautiful in pink!" Instead I simply said things like, "Nice choice," and "Looks good." I loved hearing her commentary on prices, styles and colors. I liked hearing that she picked up some of my shopping tricks.

Laura can handle my credit card and does well handling buying things. We make a great team together and looking for many more trips together.

 

Tuesday, June 28, 2016

A letter to a mom carrying a baby with a disability

Dear mom who learned that she is carrying a baby who has a disability,

Congratulations!!! You are about to embark on the biggest rewarding journey of your life. As a mom of two, I know the doctors will try to scare you, frustrate you and put guilt on you to abort your baby. Even though my children don't have special needs, I'm considered a high risk case due to my age and disability and they tried that act on my babies. All you need to ask them is how will they can help the ,baby instead of killing them and then you'll get real answers.

Yes, I know the statistics that one in every three babies with a disability is aborted.  And they'll tell you the baby is better off and won't suffer anymore. But that doesn't mean it has to be your baby. Right now your baby is living inside you, growing, learning and experiencing. They aren't suffering, but they are living the life that they were given to the best of their ability.  Your baby does deserve every chance to live and let the rest of the world know their beautiful soul just like any other baby. Even if their time is limited due to their disability, it is their time to shine, teach, and be in the arms of love.

You did nothing wrong to deserve a baby with a disability. You didn't make your baby have a disability. Now is not the time for guilt. Now is the time to rejoice, learn and live.  You're unique and have super powers that you haven't even tapped into yet.  You have a chance to witness wonderful miracles each day even the tiniest miracles should be celebrated.  You are not only a powerful mom, but you can offer support, guidance and love like no other.  You get a backstage pass to the most awesome miracle of life that is about to unfold.

Unfortunately, there will be people that want to knock you down, knock your child down and try to make both of you feel worthless.  Chin up because what they knock down is far from worthless.  It's their loss to miss out on both of you and definitely their mistake - not yours.

Your baby within you is perfect. They might have challenges, but they also have amazing talents and gifts.  We all need help but it doesn't make someone any less human. Some days will be very difficult but most days will be joyous. The love between the both of you will only grow to do beautiful things.

Don't be fooled by those wanting you to abort your precious baby.  They don't realize how beautiful your baby actually is and that they deserve a chance to change the world. Go for it, Mom! You can and will do terrific- just like your son or daughter!  

 

Six years married and he still holds my hand

On June 26, Jeff and I celebrated six years of marriage. Marriage is rewarding but can be a complex. I always tell young women and men to marry for love but also common ground.  Marrying someone who is opposite of you doesn't always work. People usually do not change and will resent you for making them do so. Remember marriage is a lifetime commitment and with more things not not in conmon can make a long lifetime.

Jeff and I are a pretty good mix. I think we have more in common than not, and we try to look for common ground.  We, of course, don't agree on everything or like everything we do. That's the challenge of marriage- to negotiate and live in peace without anyone giving up their happiness.  

After six years, we've been through our share of experiences, sadness, happiness and the unexpected.  Sometimes it felt like we had a hard time even keeping our heads above all the chaos circling us.  Cancer and nursing school were a big challenge for our marriage. Both were unknown and scary but we just kept holding hands to let each other know that we aren't alone. 

My goal for us is not only never divorce but not to want a divorce.  I want to be happy and enjoy my life. Unfortunately, I had the experience of being in a marriage that I had no business in being in. I now have beautiful Laura from that marriage, but I also carry lots of pain, fear and mistrust.  I married then for love without thinking if we would be compatible for the rest of our lives.  I knew better with Jeff, and he knew better from his previous relationships.

In previous anniversaries, we went to concerts, dinner or something else just the two of us.  This year we decided to include Jason and Laura too.  They are a big part of who we are. We want to be a better couple so they can have a good model to copy when they look for marriage partners. We don't want them to have terrible marriages due to our behavior.

We went to a family festival at Malvern Retreat House.  The weather resembled the weather on our wedding day - blue skies, warm sunshine and a light breeze.  Music, food and kid activities are an excellent recipe for fun.  Jason spent most of the day filling up water balloons with the volunteers. He loved doing this that we think he'll make a great camp counselor one day. Laura spent most of the day listening to the bands with us. She would run around too and kept tabs on her brother.  It was a very enjoyable day and great to be together.

Who knows what to expect this year of marriage? Hopefully, it won't be cancer or other scary illnesses. Hopefully we will grow and learn together to reach goals plus raise our children to be strong, smart and kind.  At the end of the day, you can rest assured, that Jeff and I will be soaking it all in holding hands.

 
 

Monday, June 27, 2016

A Wheelchair has many possibilities for a parent with a disability

A wheelchair isn't just a device to help you be mobile. As a parent with a disability, a wheelchair becomes another tool to assist you in the journey of parenthood. Using various functions of your chair can provide independence and fun for both you and your child.

The first rule in my household was to teach my children not to use my joystick unless given permission. My daughter caught on to this rule pretty quick. She's also more cautious and not wanting to get hurt. My son, on the other hand, is much more adventurous.  When he was crawling, climbing and beginning to walk, I needed to park my wheelchair in another room if I wasn't in it. He didn't quite get no and we didn't want to hurt anyone especially himself.

Now that he's older, he knows not to touch my joystick.  He knows that it's mommy's wheelchair and he needs permission.  My daughter is older and is able to drive my chair if needed and understands all of the functions.

The tilt function on a motorized wheelchair is great for a million reasons. But for a mom with a disability, tilt is an awesome tool. Both of my children have benefited from my tilt function making all of us just a bit more independent. 

When my son was two years old, he became fascinated when I tilted my wheelchair back. I let him stand on my footrests and will say, "up!" I slowly tilt my wheelchair as I have a firm hold on him with my knees.  I never go too high and go down. At two, he liked it simply for the fun of it and being with me. Also, he learned up and down plus how to ask questions. 

Now that he is three, he uses tilt for more functional purposes than just entertainment. For example, when he wants to get something off of the table or counter, he will come and ask me to help him. He gets on, I tilt enough so he can reach the item and lower him down.  It makes him happy to be able to get what he wants and me happy to help him. 

If my daughter is unable to reach something in the refrigerator, I can also help her by this tilting function. I absolutely love to assist my children as best as I can so things like tilt help make that a reality.

My son will also use the footrest as a stool. We work together to reach something he or I needs.  However, in many cases, it isn't a necessity but he wants candy from the jar or a pretzel from the container.  I also can carry him on it if we need to quickly get out of a rain storm as an example.

Another fun use of a motorized wheelchair is pulling your child on roller skates or a roller blades. They can hold on to your handle bars as you drive and they'll go gliding behind you. This definitely will up the fun level in the day.

Using your wheelchair with children makes life fun and helps you be independent with your children. They both know the do's and don'ts with my wheelchair but I never want them to fear the chair. Be cautious but always use creativity. 

 

Friday, June 24, 2016

I wish Finding Dory was around when I was a kid

Being a child in the late seventies and early eighties, movies about people with disabilities were scarce.  I remember seeing one on television that showed a man falling for a woman in a wheelchair but she ended up dying in the end anyway. Not very positive.  As of lately, there is a movie about a man who commits suicide despite being well loved, educated, and having a great life because he's in a wheelchair. Again, a terrible representation of people with disabilities.

In Finding Dory, the subtle messages that were throughout the movie hit home to me even as an adult.  Dory, the main character, has a short term memory loss disability.  She is constantly apologizing and feeling bad for others having to deal with her.  I can relate. My memory is just fine, but I need help several times a day and often apologize. I apologize for things that I can't even control. I tend to feel so bad to ask for help that I might not even ask. 

When having any disability, we want to be accepted for who we are from others. But oftentimes, we forget to accept ourselves. We don't need to apologize for even daily everyday needs because that is all apart of being a person.  Everyone has limitations even though some choose to act like they don't. We need to accept our limitations and stop apologizing (I know I do!)

I also liked Finding Dory because it shows that even if you need help, you aren't helpless.  I could relate again when Dory succeeded at things that she didn't even imagine possible. I feel this way on small accomplishments as well when my big dreams come true. So many tried to make me believe that I couldn't be a teacher, public speaker, writer, wife and mother. All of these were my goals, and when I did accomplish them - I felt a great sensation of success.

Dory's friends and family didn't always believe in her. I loved seeing the transition of not believing in her to realizing that she is much more capable than they thought. I know that feeling and it's great to show your loved ones that you are much more capable than anyone thought.

I highly recommend to see Finding Dory to anyone but especially those with disabilities or care about those who have disabilities.
 

Thursday, June 23, 2016

Jason's first movie Finding Dory

I missed going to Laura's first movie.  Jeff and I were still dating and he was new to sentimental mommy things. On a day that I wasn't feeling good, he nicely offered to take her out for a few hours so I could rest. Laura was two but pretty mature at two.  He didn't quite know what to do so he took her to the movie, Toy Story 2.  Needless to say, I sure gave him a talking to about taking her to her first movie. But she loved every second of it!

When I was pregnant with Jason, I said no way would I miss out on his first movie.  On Monday, I made true to my promise and we all went to Finding Dory. I was reluctant to take him since he can be a handful if he became bored. Jeff packed plenty of snacks for Jason.  He sat in between Laura and Jeff. He was totally engrossed with the trailers, mini movie and the feature. Towards the end, he sat in Jeff's lap because he was tired.  When I laughed at the movie, he told me to,"shhhh!"

How did he do so good? We talked to him about what was going to happen and how he needed to be quiet. Jason was also so into the movie that he didn't have time to act out.  Jason did great!

On the way home, Laura told him,"In all of the movies that she ever saw that this one was the best because she was with him!" Talk about melt my heart.  Jason told me he loved it and it was awesome! He did great acting out scenes and loved the octopus.

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...