Tuesday, December 20, 2011

Surviving renovations

If you have been following me on Facebook or Twitter, you would know my house has gone through renovations. The reason why was to make the house bigger and more accessible for me. We put a deck on, turned our sunporch into a dining room, upgraded and changed the kitchen and redid our bathroom.

These renovations took about three months. Three months of having upheaval, hearing lies about deadlines, extra costs arise, countless trips to Home Depot and Lowes, disorganization and having workers at the house. At one point, only two people could fit in the living room because we were surrounded by boxes of hardwood, kitchen contents along with our living room furniture.

Today the last worker left. Two of the workers became like family. For the last few weeks one came at the house at seven in the morning and left around three. He knew our animals and had conversations with Laura. It will be strange not to see him again.

When he left, I felt like when I took Laura home from the hospital after she was born. Almost scared to touch or use anything. However, we have a beautiful kitchen, dining room, bathroom and nice deck.

Taking care of Laura was the hardest when the kitchen was ripped out. We were out of a kitchen sink for almost three weeks.

My attendants were great through it all. The environment certainly wasn't attractive or easy to work through. They cleaned around it and tried to make it feel as homely as possible. We tried to keep Laura on her routine as much as possible.

To make matters a little more complicated is that I came down with two sinus infections and laryngitis. Laura had colds, ear infection and was diagnosed with asthma.

Now that it's all over, I'm busy reorganizing the kitchen, decorticating the new dining room and getting the house back into shape.

Hello December

Today is December 1! November feels like a whirlwind with our renovations and sicknesses. I'm excited for the Christmas season though.

As a parent, the Christmas season is pressure because your child only gets one childhood. She only has one Christmas being five. You want to make it special. As I received Christmas catalogs, I gave them to Laura. She wants everything. Last year she was a little more precise.

I laughed because days later I gave Laura the same book and things she wanted before weren't important anymore. So this year I'm using my common sense. I have gotten 80 percent of her gifts. I'm doing a lot of art project kits, a wagon for her toys, blocks, Legos, movies, one doll, books, a yellow dragon (her request), power rangers, jingle all the way and a play kitchen with food.

Sunday, November 13, 2011

Lucky dog

There is a lot going on in our house lately. We are doing renovations to our kitchen and making our porch into a dining room. Great things and will be all good in the end, but the time now is stressful. On top of this, my dog, Lucky, has been having health issues.

Lucky came to my house in September 2002. Israel and I were searching for a dog. We didn't get one yet but searching for prospects. I always have had dogs ever since I can remember. Dogs are easy to get attached to and I love them. I like cats but always liked dogs.

My sister told me about a puppy she met at one of her homes she did home therapy in. When she brought Lucky in the house, she was a small 9 month old black and white dog. She looked like a miniature german hair pointer. The previous owners didn't want her because she was too lively and they had 5 kids. One had a disability.

Lucky was rough around the edges. She ran around like crazy, chewed everything in sight and was aggressive. The first time she was left alone with me, she tried to rip my sweater off. I almost opened my front door and let her lose. I called my dad and he brought me over a stick.

No, I didn't hit her. All I had to do was wack it on the floor and she stopped. During the first Christmas, she ate lots of decorations and even light bulbs. She was an active girl.

After a few months, Lucky had her first seizure. She was diagnosed with epilepsy. She was put on medication and every once in awhile has a seizure but is good otherwise.

This year she had skin infections and ear infections. She was sick more than healthy. Vet bills were piling. Then she started going to the bathroom on furniture without knowing it. She even went on me and didn't wake. She looked sad and miserable.

Jeff put the decision in my hands. He listened as I drew my conclusion that I should put Lucky asleep.

I cried as I made the appointment, I cried all morning. Whenever I looked at her, I felt like Judas. Most of my friends on Facebook agreed. My dad agreed. I forgot to mention she stopped eating her dog food and drinking excessive amounts of water.

We did not exactly tell Laura what we were doing. However, I explained that she was old, uncomfortable and soon God might call her to Heaven. I told her about the rainbow bridge. She was excited for Lucky but also cried and I cried too.

Jeff took Laura to the store with him and got me a carvel chocolate cake and chocolates. He got Laura donuts and Lucky hot dogs. He was supportive to me and calming even though I felt sad and a terrible person.

My dad picked up Laura and Jeff and I made the trip to the vet with Lucky. Jeff put music on trying to avoid sad songs. I answered texts and broke down numerous times.

As we parked, I physically felt sick. Now I just wanted it over with for all involved. When I entered, the nurse looked at me and I'm sure I looked like Hell and was crying. She knew who I was. I saw a lady with puppies and felt immediately jealous. I wanted Lucky to be a puppy again.

The nurse teared up. Jeff answered questions. The nurse asked if I wanted to speak to a vet. I said yes. I needed that last minute knowledge that I did all I could. They escorted us back.

The vet was silent during her exam. I explained why we were doing it in detail. She left the room and Jeff and I petted Lucky. It felt like forever.

She came back and said Lucky's medications from ear infections were causing her not to eat, have accidents and be sick. She said she would do what we want to do but her suggestion was to wait two weeks and see.

We decided to wait. Lucky did have another accident but is drinking less water and eating more. I'm cautiously optimistic but I have a piece of mind that we did everything.

If we need to euthanise her in the future, I'll be sad and it will be hard. However, I know we did all we could. Now we just enjoy her and monitor the situation. Ideally a few more years would be great but day by day works for now.

On a side note, thank you to all those who supported us during the difficult time. It definitely helped me and felt not so alone.

Saturday, November 5, 2011

Friendships: what is real?

Sometimes in life learning is hard and painful. Having friends is so important. However, friendships when you have a disability, especially a severe one, are tricky.

Growing up, I had lots of friends in my special education classes. But when the gates of inclusion helped me tremendously academically, I was like a fish out of water socially. To this day, I don't know all the answers or why but I hope to help some others who think they are alone.

Having a disability that interferes with your speech, mobility, driving etc does have an impact on friendships. You might find yourself not being included or invited to things simply because they might not think its worth the effort to take you.

Other people might impact your friendship as well. They might think that hanging out with you isn't cool or ties them down.

Try to not let it get to you. I know from personal experience that it can cut your heart deeper than you want to admit it could. I've had friends who were all about hanging out and doing stuff when they needed something or were bored. But in the end, left me alone when something better came along.

As I watch Laura grow and make her own friends, I pray she is a good friend and she isn't hurt a lot. I teach her how to be kind and cherish everyone who brings some happiness to her life.

Unfortunately, friendships can be like lightning - one minute brilliant warm friendship and next gone.

Please remember friendships are real and matter. Text, email, or call a friend. Don't make them do it all because that is an obvious reflection on your true feelings about them.

Wednesday, October 26, 2011

Laura and Halloween

Laura was barely a month old for her first Halloween. My neighbor gave us an infant pumpkin costume that was huge even on Laura but looked adorable. She was so tiny. She weighed just over 6 pounds.

My sister had a Halloween party for my nephew who was 3 at the time. I took Laura and have memories of my dad holding her as she cried that little newborn cry.

My friend along with her daughter, took Laura to mall-o-ween. I knew she wouldn't get much out of it, but it was fun seeing the kids. I remember Shannon feeding Laura in the van as I occupied her daughter.

On Halloween night, Israel held her as he gave out candy. The neighbors liked to meet her. After she fell asleep in her swing, we cringed when the door bell rang and ended up closing doors early so she could sleep. That was the last and only Halloween she had with her biological father.

When she was one, she liked the idea of dressing up and getting stuff. My friend and I took her to the mall for their mall-o-ween. We met her uncle there. Laura was a bumble bee and was walking around. Halloween night we took her to a few houses but she got fed up pretty quickly.

She was an angel at 2. She looked adorable and definitely was more in the spirit. We went to the Phillies parade that day because they won the World Series. She went to many houses with me, my dad and my nephew.

At 3, she was tinker bell. It was a fun night, but towards the end, it started to pour rain. We did quite a bit of houses but came home soaking wet.

At 4, she was a witch. She walked in the Halloween parade with my nephew. Jeff took off and was able to go trick or treating. She said Trick or Treating and we were out the whole time. It was cold out and we all went as a group -my sister, my dad, my nephew, Jeff, Laura and me.

This year, she wanted to be sleeping beauty so I got the costume. I ordered it online and Laura said it was too scratchy. So now she is a blue/purple dragon and is warmer. She looks quite cute.

Halloween time

I have mixed emotions about Halloween. The negative side is that it means winter is coming. However, I do enjoy October colors, decorations, and activities. Having a daughter adds to the fun and experience.

As a child, I wasn't thrilled about Halloween because everyone knew who I was. My dad would carry me into houses and I didn't like being cold. I'm glad he did it though and it was my decision to stop going when I was 6 or 7.

I enjoyed sitting at home helping my parents hand out candy. I liked watching all the kids come by in their costumes. I'd eat candy and when my brother and sisters came home, they would share theirs with me.

When I was about 9, we entered in the local Halloween parade. We went each year, even though I hated the cold and the sirens of the firetruck. I did enjoy seeing the floats and kids.

So when I was 9, my mom took a cardboard box and drew a jungle theme. She cut a hole big enough to fit my head through and I wore a monkey mask. She fit the cardboard around my chair. I was able to participate in Halloween!

Friday, October 21, 2011

Shower at last

Independence is a huge word for someone with a disability. It's a word I have heard since childhood. Doctors explaining how I would probably not be independent at mostly anything. Then therapist telling me that if I did more of what they tell me, that I would be more independent.

I have become more independent throughout my life. I was finally able to sit on my own around 4. Granted it was the dreadful W position. Yet everyone told me that I shouldn't sit that way because I wouldn't be able to move at 20. I am 36 and still crawling and hopping around.

Most of my life, I needed to be lifted into the bathtub. I know it wasn't easy even though I'm not heavy. It certainly wasn't easy on me trying to control all my muscles to go into one area. I also worried about hurting someone too in the process.

In 2006, my brother and friend put in a shower that I could crawl in/out of. I was seven months pregnant and it was not worth the risk of my baby, myself or anyone else to get hurt. I can't tell you how nice it was to get in and out myself. No more worrying!!

In the back of my mind, I always thought how nice it would be to be able to turn water off/on. Dressing myself isn't the easiest but can be done with the magic of elastic. So it wouldn't be a big problem if I needed to get ready on my own or just wanted to.

Before Jeff and I were even engaged or dating long, he said his dream was to help make my house as accessible as possible. He mentioned lowering the controls in the shower so I can get clean when I want. I thought it was a fantastic idea.

This past week the reality finally came. Granted we were out of a working shower for about 9-10 days but our YMCA is so close, that it wasn't terrible. Today we have a beautiful white tile shower with controls that I can use. I even took two showers today simply because I could!

Laura is happy with it too. She said that now she won't have to stop playing to occasionally turn on/off the shower.
Now on to more renovating.

Wednesday, October 19, 2011

Laura turns five

On September 21, Laura turned 5 years old. I never thought this could happen, but on that day I saw a change. She matured and looked even taller. My baby wasn't a baby anymore but a young girl.

We spent the day having fun!! At pre school, I sent in cupcakes and juice. They sung Happy Birthday and she wore her birthday girl shirt. When she was at school, me, Jeff and Donna (my personal care attendant ) hid half of her presents. Unfortunately, Jeff had to work 12-9 but the night before, we took her to her favourite Chinese restaurant and gave her a present. Ariel princess dolls for the tub.

My dad had off that day so we picked Laura up from school together. We came home and she enjoyed finding her gifts. She threw her arms around me and said how much she loved me.

After that, she played outside with my dad, played with her furreal dog. Then she did her Spanish homework. By then it was time to pick up my nephew with a trip to Chuck E Cheese!

She had a blast. Even though I can't do everything with her, I watch, root her on and support her. Some other kids stare and Laura just ignores them or says "she has cerebral palsy. "

After three hours of play, pizza and fun, we went back to the house for red velvet cake and the rest of her presents. Fun day!!!

Tuesday, October 18, 2011


Having a disability at a bar or somewhere people dance is interesting. People have no idea how to react.

My experience dancing has been relatively great. However, sometimes people get a little carried away when seeing me. I have gotten kissed unwantedly by men and women. I have gotten stared at, looked down on and told how wonderful I am by perfect strangers.

Once a lady grabbed my arm and told me to look at her and calm down!! My arm hurt for a day or so.

From their point of view, I do understand to a certain degree. When I watch a movie about someone overcoming their challlenges, I also feel proud and happy for them. I don't think I'd jump up and kiss someone though.

I think if someone would like to be my friend, then just say hi and talk to me. Otherwise , smile and just be happy. I'll let you live if you let me.

Monday, September 5, 2011

Good bye to summer

Summer has come and gone once again. We had a busy but good summer. Laura enjoyed camp and made friends. The last day I picked her up, I felt very proud to see all the kids hugging her and calling her their best friend!

I was happy that there wasn't any harsh thunderstorms. I'm not a fan and sometimes expect the worst. Jeff has helped me in this little bad habit. Life isn't always sad and negative. Thunderstorms also make me jump! Laura doesn't mind them though. I'm glad about that.

We went away to Williamsburg VA for one week. We left on a very early Friday morning - around 5. Jeff did a great job driving and we made excellent time. Laura watched movies on her iPod and played on her leapster explorer. I thought she would fall asleep but the didn't for the five hour trip!

We had passes to Colonial Williamsburg. Laura enjoyed seeing all the colonial items. Unfortunately, for me, a lot of it wasn't too accessible. I waited for Jeff and Laura. It didn't really bother me because I knew she was learning and enjoying seeing everything she could. 

Laura really enjoyed the pool at the resort. Each time she went, she made new friends. Even friends came back to say goodbye to her. I watched her constantly. You can never be too careful when a child is in water. 

One night, there was a bunch of older children in the pool being a little rough. I told Laura if it became too much-she should come out. I was very proud that she did. It was nice to see that she knew her own limits. 
The most difficult part of the trip for me was the bathroom. It had a bathtub opposed to a walk in shower. Jeff and Laura love baths but I can't get in or out myself. Jeff had to assist me. He said he didn't mind but I felt bad about all the lifting he needed to do.

Saturday, August 6, 2011

Relationship positives with a disability

I was thinking today about all the special perks of being a partner with a disability. Our relationship is a lot more intimate than some not dealing with a disability. Even though I tend to forget about my CP, it's definitely exists.

The Perks:

- Each time Jeff puts me in my wheelchair, I get a hug and can hug him!
- I'm fed just about everyday from the guy I love. How lucky is that?
- He brushes my hair and styles it. Very nice and I always know he likes the style.
- My hand doesn't always let go when it should, so I can hold his hand longer.
- When I am extra tired, he carries me to bed.
- He learned how to fix my wheelchair better than me.
- He loves technology and is always on the look out on how to make my life easier!
- Jeff knows "CP language. "

See, having a disability is pretty awesome some times if you look at it in a positive light.

Friday, August 5, 2011

Customer service

Many people complain about customer service but when you have a disability, your expectations are even lower.

When I am at a store, I notice employees sometimes run from me so they can avoid helping me. I laugh to myself. I see the fear in their eyes when they think they need to talk to me.

Today I was pleasantly surprised!! Jeff and I went to various stores and everyone we needed to talk to, were great. They talked to me and showed me things instead of just talking to Jeff. This made me feel real and alive.

I think over the years of being ignored made me shy and even scared to deal with people. Jeff pushes me to talk. Sometimes I hate it though!!

The top friendly retailers are:

Home depot
Best buy
Sterling kitchen

Keep it up!!

Sunday, July 31, 2011

Spanking - for or against?

This blog post was inspired by a status going around about the parental right to spank.

Ever since I was young, hitting anyone, especially a child made me cringe. My parents spanked my brother and sister. I hated it and could not understand this irrational behavior. It made me not respect my parents position. I felt they were being bullies. Today they don't agree with spanking either especially with so many other discipline options.

I see spanking as more of an anger release for parents. Spanking teaches children nothing except parents are hypocritical. Parents often say "don't hit " then go and hit their children for misbehaving. How does that help a child learn?

Laura can have very bad behaviors. Hitting her is the last thing I'd do. I take things away, take activities away, time out and talk. I think taking away things and abilities have more of an affect then hitting someone.

Is it ok to hit others when they misbehave? No. Why in the world is it ok to spank a child who isn't even allowed to fight back???

Laura is still an awesome child even without being hit. She knows her boundaries and knows her consequence. She has respect for me and others.

I also feel that hitting children can lead to domestic violence, in some cases. I have met several people who were hit and now have anger/respect issues. if you are steadfast on hitting for discipline, I hope you try to exhaust all other options.

Respect of our human bodies start at home. Think before you spank. Are you doing it for them really or too lazy to be creative in discipline?

Saturday, July 30, 2011

Technology for people with cerebral palsy

Here is a list of technology that I feel improves my life:

1. Apple Mac Mini MC815LL/A Desktop (NEWEST VERSION)
- All my life I was a PC user until my fiancee at the time brought me a Mac Mini for Christmas. No more crashes and I can do everything plus more that I did on my PC.

2. Apple iPod touch 8 GB (4th Generation) NEWEST MODELMP3 Players)
- I didn't think that I could use either of them. To my surprise, I could use them great. I set them on my lap sideways and type with my thumb. Many people have said that I text better than someone without CP. I can check emails and do mostly anything on it.

3. Verizon remote app - I have a difficult time using the TV remote because you need to aim it just right. With the Verizon app, I can use it right from my iphone and it's free.

4. Apple iPad (first generation) MB292LL/A Tablet (16GB, Wifi)Tablet Computers)
- As you can tell, we like Apple. I also was skeptical of myself using the IPad but now I love it. I can type articles, blogs etc in the comfort of anywhere. They also make key guards for that but haven't tried it yet.

5. Kindle, Wi-Fi, Graphite, 6" Display with New E Ink Pearl Technology
- The Kindle has brought back the joy of reading. I love how I can just read a book without any effort.

6. HP Officejet Pro 8500A Wireless e-All-in-One (CM755A#B1H)Office Inkjet Printers)

- This is my wireless printer. I can print from my Iphone and Ipad. It's quiet and great quality.

Monday, July 25, 2011

Laura's life plan at four

For some reason, ever since Laura was about two and a half, she decided she wants to live close to me. She has told relatives that her and her husband plus kids will live in my house. She'll sleep on her bed and they can sleep on the floor. However, now she said they will build an apartment in the basement.

Today Laura came up with a plan. She told me that after she's a grown up, she'll move into the neighbors house (after they die), work for me as my personal care attendant and I can help raise her kids. Then she thought about a car and explained that since the neighbors will be dead - they won't need a car so she will drive theirs.

Honestly,the idea sounds wonderful (except our neighbors dying, of course. ) I do encourage her to go to college. She wants to be a veterinarian and a Mommy. :)

Too much cancer

Our week has been going pretty smoothly. We have had some sad news about a family friend having cancer. Plus there are some local children dealing with this horrible disease. Cancer is hard enough for adults to deal with, let alone a child.

One little girl lives very close to us and is only months older than Laura. She was diagnosed with brain cancer just after Memorial Day. Our community has taken a huge interest in helping her and her family. Her family blogs about their struggles at http://getwellgabby.org .

I feel such a strong connection to them and pray for them daily. Laura knows that Gabby is sick but I didn't explain the technicalities to her. Even though Laura has an amazing grasp of death, it is still my duty to protect her.

All this talk about possible death, always brings me back to the time of Israel. Shortly after his death, I dreaded the day after the funeral. That is usually when you're most alone and your brain quiets from planning. Mourning is horrible to deal with.

Many called me strong. I could never figure that out. Did I have a choice? A baby was depending on me plus my family and friends. I think we're all strong and we just need to tap into it and lean on God as needed.

After I tucked Laura in tonight, she asked me if she could meet Gabby. I said hopefully soon. We need to keep hope and strength to get through this crazy life.

Friday, July 22, 2011

Lion King week

Laura hasn't been home between Monday afternoon and Thursday afternoon. Jeff's parents took her to go see The Lion King on Broadway. While they were there, they took in the sights of New York City.

It was also a very hot week. I refuse to complain because I really don't enjoy cold weather. I also have central air in the house so that certainly makes it comfortable.

When Laura was gone, I tried to work on the house. My attendant and I cleaned out my living room closet, worked on scrapbooks, finished Laura's baby book, shopped and hung out with my nephew.

Monday, July 18, 2011

Attendants - not an easy balance

As many people with disabilities know, personal care attendants become as crucial as your right arm. Depending on your needs, they do several things for you. In the process, friendships develop and often make being a boss challenging.

I can get along with most anyone. Usually when I hire an attendant they stay for awhile. I either need to fire someone, lay them off or they need to move on for financial reasons or personal reasons. Right now, I have two attendants who have been working for me for over three years. The longest attendant I've had was about five years.

Last Sunday, I had the painful task of firing a full time attendant who worked here almost a year and a half. To make a long story short, she was good except unreliable and pretty much set her own hours with little flexibility. She took the news fairly well. I think I put more energy into worrying about it then she did taking the news.

The person who replaced her has been my weekend attendant since January 2008. She lives an hour away but has been reliable, dependable and flexible. We discussed the distance because I always try to hire somebody close by. However, she has been successfully driving to my house over the last several years with no problem.

This is her second week working full time. Working with her has been easier than training a new employee. I still need to remember that I'm her boss and we need to keep business in check.

People don't realize, I believe, how challenging it is to have a personal care attendant. Everyday you're the boss and co worker. There are no breaks from living (eating, going to the bathroom etc.) You can't expect an attendant to be a robot or perfect. However, they can't expect you to be there counselor, life coach etc.

It's not an easy balance but I want to thank all the attendants out there for your dedication and respect.

Saturday, July 16, 2011

Interesting day

This happened a few weeks ago but forgot to post.

Yesterday was an interesting day. Jeff had to work. He has normally had Fridays off but since he has vacation, he had to work. My ankle has been hurting for about 2 weeks but I managed to re injure it Thursday night. So, I was in a lot of pain.

My regular attendant couldn't come in for me so my dad offered to take Laura to camp. Well he forgot and after a few tears, I decided to take Laura for a long walk. We went to a park and she played. She likes the slide the best. By the time we got home, my attendant, Grace, was coming.

I decided to walk to the doctor. Laura walked with me and was excited for the adventure. She said, "here we go again " and giggled.

The doctor said I hurt my tendons and since I move a lot, it's not healing. So she put an ace bandage and prescribed a muscle relaxer. I'm also supposed to see a foot specialist. Since I spent a lot of time in my wheelchair over vacation, I thought my tendon would heal but not yet.

We walked home and sang, "doe a deer" almost the whole way. We spent the rest of the day packing for our trip. That night Laura slept over my dad's house so I could attend a disability dance.

The disability dance was a success. It was held at the freedom valley YMCA in spring valley. Later we attempted to see one of our favorite bands and drove an hour only to discover they were inaccessible. When will I learn to call ahead?

Tuesday, July 12, 2011

Michael - the strange beach guy

Ask anyone of my friends and they will tell you that I attract strange people or situations.

A few weeks ago, Jeff, Laura and I had a four day vacation at Atlantic City. We had fun walking the boardwalk, going on the beach, relaxing, eating at buffets and just being together. Even one day it rained, but we had fun anyway dodging in and out of stores so we didn't get completely soaked.

Everyday we all went back to the room and relaxed. Laura watched some TV or movie while Jeff and I hung out on the balcony. This helped regain our energy and avoid any meltdowns from being tired.

On the last day, Jeff was very tired (he carried me on and off the beach that day) so he took Laura back to rest. I wasn't tired so I choose to stay on the boardwalk. We agreed to meet up in an hour and a half.

I walked down the boardwalk and stopped into some shops. It's a very long walk so by the time I got to the end,I had a feeling that I might be a little late meeting them. I texted Jeff telling him I'd be a little late and we agreed to meet about eight thirty.

I went back and realized that I had a half hour to spare. So, I walked down a little further and sat by a bench looking at the ocean. I read facebook updates and my email on my phone when suddenly a guy asked,"What are you playing?" Startled, I looked up and saw a guy in his mid thirties with blonde hair sitting next to me.

We had polite conversation. Then he proceeded to ask me about my disability and how I got it. After I told him, he grew perplexed. He told me that I look too energetic and pretty to be in a wheelchair. He said I should be out playing tennis or be jogging. I said I do have a normal life happily with my partner and daughter. He was shocked and seemed annoyed again that I was taken. He said that if I were his wife, he would have me walk everyday so I can get over my cerebral palsy.

Then it turned weird and scary. He asked me if I knew of Terri Schivo (The woman whose husband had her starve to death for no good medical reason.) I said yes and he told me I should be careful because one day my husband will be angry that I have cerebral palsy and do that to me.

At this point, I had my had on my joystick and then he asked what would I do if he tried to rape me? I turned my chair on full speed and left.

I was so happy to see Jeff! Why can't I meet normal people when I'm out and about?

Monday, July 11, 2011

Total success from pull ups

Laura is an extremely smart child. I know that I'm biased but sometimes it's easy to forget she's a child. One thing is potty training has been a long and frustrating thing for us to go through.

Her mind understood what to do but her body just wasn't ready. Because she was so intelligent, I started training around two. Big mistake. I wish I waited until she was three because I think her body would be ready.

At four, we would have occasional accidents especially over laughing. I still have an accident from laughing sometimes. She also wet her bed at night.

Instead of getting upset,I just let her wear night time pull ups. This helped everyone sleep and kept a dry bed. Recently, she has been waking up with a dry pull up.

Then one night last week, Jeff and I heard her door open about two hours after we put her to bed. We looked at each other trying to decide who was going to put her back to bed. To our surprise, we heard her go use the bathroom, flush, wash hands and without any words went back to bed! We felt like we won a marathon.

Last night, at four o'clock, Laura woke up and was crying. I immediately thought a bad dream or a wet bed. By the time I opened the door,she was sitting on the toilet with a big smile.

I asked why she was crying. She explained that the hall light didn't come on right away and she was scared. Then she kissed me and said "good night,Mommy." As she put herself back to bed,I choked back tears.

Babies grow too fast. I'm thrilled that she's learning and gaining independence but I feel a longing of her needing me. Growing children are bittersweet and absolutely wonderful!

Rascal flatts

Jeff and I went to see Rascal Flatts with my friend, Caitlyn, on Saturday. It was a strange day prior. I was so tired and in slow motion.

We got off on a late start for a picnic for my power chair hockey team. Here we had the wrong address from an email. We got there just in time before Caitlyn left. She had the tickets!

Jeff and I handle stress pretty well. We actually have a good sense of humor about things. We planned on eating as socializing at the picnic. However, we didn't make it in enough time because Caitlyn wanted to leave early enough since she wasn't too sure where it was. The concert was at the Susquehanna bank center in NJ. Not too far but traffic can make it ridiculous.

Jeff and I quick picked up food at mcdonalds. I just got a milkshake and fries. I can't feed myself so it was easy to feed me on the way.

After parking, we waited for Caitlyn who had trouble finding a parking spot. As we waited, Jeff bought me a purple cowgirl hat to match my purple top. Hats have a hard time staying on my head but when it did, it looked good! I move too much so it was falling lots.

When we found Caitlyn, we went to our seats. Caitlyn got our tickets and we suggested to get the indoor seating. It was close and kept us out of the sun. Sara Evans opened and was good.

Rascal Flatts put on a show. They were nonstop and we all sang plus danced. They sang my favorite, "God Bless the Broken Road." I came down the aisle during our ceremony and the words are truly how I feel about Jeff.

When it was over, it took us almost two hours to get home due to waiting to get out of the parking lot. Jeff had to be at work by 7:45 and my aide came at 8. Laura slept at my Dad's but I still had to get up early. It was worth it!

Saturday, July 2, 2011

Wash hands , please

Whenever I take Laura to the bathroom, I always have her wash her hands afterwards. Since she always needs to go to the bathroom whenever we are out, I've seen quite a few public bathrooms. I am sad to say there aren't kid friendly sinks in most.

I normally have her use my footrest as a stool. Most sinks are way to high for children until they are 8 and up. The faucets are hard to reach and the soap is almost impossible. As a mom with CP , I can't help Laura reach everything but we do the best we can. Yes, I could carry wipes and hand sanitizer but I think children have a right and responsibility to wash their hands.

If we are supposed to teach our children hygiene, please give us the proper tools. Children probably need to be clean even more than adults.

Tuesday, June 21, 2011

iPad makes me happy

My kindle is wonderful when it comes to books. Lately I've been using Jeff's iPad. He hardly uses it anymore. At first, I didn't think I would use it because I thought it would be too difficult with my cerebral palsy. Now I love it.

I use it mainly in the living room and I can be with Laura as I write. My favorite apps are pages, planner, day one etc. Jeff and I play monopoly on it. I have a few games on it for Laura but we mainly let her use my old iPod touch.

I've been very tired all week. I don't like being tired but I'm guessing it's because change of schedule.

Monday, June 20, 2011

First day of camp

Camp has begun for Laura. I decided to let my daughter go to camp because she did so well in pre school. You sign the child up week by week. Laura is going to go every other week due to vacation and I just want to have some lazy days of summer.

Laura woke up on time and was all dressed before knocking at our door. She was excited. Donna worked as my attendant today. She came right on time at 8 and Laura had pancakes. Her favorite right now are mini pancakes from giant. I got ready and said good bye to Jeff. He worked 9-6 today.

When we dropped her off, we learned that there was 550 kids signed up for camp this week in total. It was fun seeing all the excitement in the air. One of Laura's pre school teacher is a pre school camp leader. Laura ran up and gave her a hug.

After I dropped her off, I came home to make a few calls. I also ate some cereal and went to do my weekly shopping. We went to acme, walgreens , and giant. Somehow we still made it in time to be 10 minutes early to pick up Laura by 12.

It was so cute to see Laura marching out with her group. They gave them blue camp shirts to wear. They also made masks that allowed them to "see monsters." Laura was happy and said she played with a little boy named, Liam.

After rushing home, we put groceries away and ate lunch. We then went back to the YMCA for her cooking class.

I might not always like my crazy schedule but I think Laura learns a lot. It's worth it. If Jeff and I decide to have another baby, I hope I can keep the same energy. Jeff told me last night that maybe I should start stocking up on diapers. We shall see.

Saturday, June 18, 2011

Let's dance

I have my degree in teaching. I absolutely love to teach. I used to set up my dolls and teach them. Then on the school van I taught two little girls on our long trip to school. Also, when I was in special education , I'd teach others when I was bored and because I enjoyed it.

I also have had a love of dancing. When Jeff first showed interest in dating, he immediately mentioned going to a place called maddie's. I was excited because I love dancing. I was also intimidated at first because not many people go dancing when they have a disability. To this day, I still feel a bit shy sometimes

I took my love of dancing with my love for teaching and contacted the Spring Valley YMCA to allow me to teach a class. Everything is looking positive but I'll find out on Monday for sure. M

Tuesday, June 14, 2011

Laura asks ,"can I help?". Several times a day

Laura has always strived to help. This isn't something that can be taught except maybe by modeling or encouraging. With Laura, helping is instinct.

When I planned on being a mom, one of my goals was to not have Laura help me in my care with CP. I didn't want her to be robbed of her childhood or resent me when she was older. However, as she grew, I realized my goal was somewhat unrealistic.

It probably started at age one when she fed me a bite of food. Then it carried into trying to brush my teeth by putting her hand on the caregivers hand. She then loved to help pick out my clothes and giving me her fashion advice.

I remember when an attendant called off. I already taught her how to turn on/off a shower so I figured that I could get her assistance. She had a blast pouring shampoo on my hair too. Other than that , I could handle it. I picked out an easy outfit that I could manage. Keep in mind I am more independent on the floor so that takes away falling risks.

As I got out of the shower, I quickly realized that I was unable to put deodorant on myself. I felt bad asking Laura and a little humiliated too, for some reason. I think parents like to appear strong to their kids even though no one is perfect.

My creativity kicked in and I asked her if she would help mommy paint her arms. She giggled and did a pretty good job! She then "painted" het stomach.

I think asking your child to help isn't horrible unless it's their main duty and daily occurrence. Laura loves helping with cleaning, organization projects and anything really. She gets upset when she can't help or isn't needed.

Marriage - ever changing, and hopefully, ever improving

It's no secret that I was married for almost five years prior to having Jeff in my life. What surprised me was that those years didn't prepare me for my relationship now. I admit- I thought second time around would be a breeze because I literally went the gamut with Israel. We had our share of joy, calmness to verbal abuse and scary times.

Jeff and I are very similar but in areas of being different-we are complete opposite. When I met Jeff, I actually took a mental break from dating and guys. I went on a few dates that just were strange or we didn't click. Then I got an email on myspace (yes,back when myspace was cool.)

I thought it was spam. It seemed generic - "you're cute - let's chat sometime." I almost deleted it, however, something stopped me. I wrote back and we started talking online. We went on our first date two days later!

Anyway before I get too far off topic-I have learned so much about myself, life, and how to relate to people through my relationship with Jeff. Every relationship is unique. What worked then doesn't necessarily work now.

I feel in areas where I'm nothing like Jeff to embrace the difference. Find the good in someone is so important even if it pulls you out of your comfort zone. He has changed and grew also. It is hard to believe that we haven't been together for three years yet. We're growing together one day at a time.

Tuesday, June 7, 2011


Today was around 96. Laura has been busy painting. She is very good at occupying herself. She plays barbies and with her stuffed animals.

I've written two articles and did some research. I talked to Jeff before work. We have been talking about careers a lot lately and various home improvement projects. After lunch, I played outside with Laura - sand box and hide and go seek. She informed me that my wheelchair doesn't hide too well. She was the designated hider.

We came in after 30min because of the heat. Now I'm updating our ipad and iphone. I'd like to write 1 more article today. Tomorrow I want to shop at Kohl's for Father's Day stuff.

As a Mom who works from home, it can be a challenge. Laura sees me working but yet I'm home. It's a hard temptation not to always play with her. Tonight we watched TV and played with her horse who according to Laura was "damaged in an accident and needs a body cast." She went to bed around 8. Tomorrow is her last art class.

Thursday, June 2, 2011


I was thinking about my school days today. Having a disability back in the 80s compared to today is a lot different. We were in segregated classes because children with disabilities especially severe couldn't be in the regular class. I felt confused and a sense of wonder why this was. I longed to be in a regular class.

I wonder if my experiences will affect Laura. I'm hoping that I can relate and understand as she enters into her school years.

I often had trouble making friends with children without disabilities. Mainly because I wasn't used to them and in a way, felt intimidated or perhaps second class. Laura has no problem at all making friends. Some kids ask her if I'm really her mom and she will say ,"Yes, that is my mom!" Then came to give me a big hug!!

Tuesday, May 17, 2011


When Laura was a baby, changing diapers was a dilemma. I had people assist me but did feel bad that I was unable to complete the task. As soon as Laura could fit comfortably in Pull Ups, I started buying them.

I could easily get pull ups off and on her. She could help me and increased her independence. Wiping Laura wasn't always easy. She often thought that I was too rough. I managed to do it though.

Tuesday, April 26, 2011

Welcome to my closet

One memory that sticks out from when Israel died was the day I took his clothes out of the closet. My sister took care of Laura and my friend helped me with the task. I never saw the closet with only my clothes. It was half his and half mine ever since we had the house (almost 5 years at the time.)

My friend went as fast or as slow as I needed. It wasn't easy on her either because she knew Israel for years too. Each piece had a memory - a history. Some good, some bad or a little of both. I think what made it easier was that I knew I was going to keep them in the attic for Laura. I kept about everything I could for her since that and memories people can tell her is the only link to him.

It was hard to get used to not seeing blue buttoned down shirts lined on hangers plus sweaters that he wore because he knew I liked it on him.

When Jeff first moved in, he put his clothes in the office for several reasons - space for one. However, during the last week/weekend, we decided to consolidate to one closet and buy a nice dresser for his clothes in our bedroom.

I can't tell you the number of emotions I felt as I sat on the bed watching him hang his shirts in the closet. It actually gave me goose bumps like we were really doing this and becoming one.

A closet isn't just a closet. It's a space that holds your personality, likes/dislikes, occupation, leisure time and most of all, your heart! Welcome to my closet, Jeff. Hope it's a long and happy journey.

Dentist and hockey

The weather has sure warmed up ! I'm not complaining either because I don't like winter at all. I'm not a huge fan of humidity but I'll take it any day compared to cold weather.

Laura went to the dentist today with my friend's daughter. She's seven and they get along great. I was saddened to learn that Laura has a tiny cavity in the very back. She eats very healthy and brushes her teeth twice a day. We are going to brush three times a day and have someone help her with the back teeth.

As a Mom, it's hard not to feel like you did something wrong when your child has a cavity. I'll work harder with her on her teeth and hope for the best !

The dental assistants were not so cool. Even though I took Laura to this office before, they assumed that I was the child. After I explained to them that Laura is my daughter, they acted all strange and had difficulty looking me in the eye. It was rather strange.

Laura played pee wee hockey later and the stick was almost as big as she was! So cute.

Tuesday, April 19, 2011

I admire you

The other day while I was watching Laura during her swim class, there was a mother at the pool with her two children. She was obviously frustrated and my attendant commented that she was being mean to her daughter. I missed the scene because I was focused and amazed to see Laura swimming by herself for the very first time.

After her lesson, Laura seemed fine until we entered the bathroom to have her change. She had a breakdown because her shirt was inside out. She solved this problem many times before but this time it was a tragedy. Everything became dramatic and crying begun. Numerous times I had to remind myself that I needed to have patience. After she dressed, I asked he to put her bathing suit and towel on my lap. Well, for some reason that created some catastrophe because another tantrum started again.

During these little battles, I asked her to stop acting like a baby because she was now over four. I also said babies need naps and when we get home she had to take one if she continued to act like a baby.

My agenda was to go to Walgreens after class. With Laura's behavior, I decided to drop her off because Jeff was at home doing yard work before work. I told Laura that her behavior wouldn't be rewarded with going shopping. She was not happy but left the car on her own.

At Walgreens, my attendant said she admired me because I kept calm but followed through with discipline. I was rather surprised because I felt it was a normal mother thing to do.

When we returned, Jeff was on the porch. He told me after five minutes Laura said she was going to bed. He said ok and checked in on her ten minutes later, and she was fast asleep. She ended up sleeping for almost three hours!

When she woke up, the first thing she told me was, "You see Mommy, I acted like a baby because I really needed a nap and you said babies take naps. " I said, after laughing, "next time just tell me you're tired and I'll gladly let you sleep."

Tuesday, April 12, 2011

Physical therapy and other happenings

I started physical therapy last week and went again today. I do like it but it's kind of an inconvenience. I go when Laura's in pre school which is good but it takes time away from my errands. Running errands without a little one is always easier. Laura can be an asset or a lot of patience at a store.

Yesterday Laura was very creative. She took some of her stuffed animals and set them up all over the living-room. She made a zoo and I would be the visitor. She enjoyed playing the innkeeper and telling me all of the names. I love her imagination and compassion toward the animals.

She also likes to act out that she is going to college. She packs a small bag of toys and kisses me good-bye. She'll set up a dorm space that she likes to call her apartment. Then to my surprise, she pretended to call Adam (our next door neighbor who is a week younger than Laura )and invited him to come over for dinner and sleep over. I panicked a little bit to envision what was going to happen when she really goes to college.

Laura enjoys acting out scenarios and stories. We have a lot of fun. It's interesting how the most enjoyable games are basically free. All they require is a little time and some creative thinking.

Savings 4/12/11

3 rolls of Brawny, 2 family packages tasty cakes, 5 boxes of cereal (cheerios, trix, kix), gallon of milk, 3 cartons of Edy ice cream, 2 steam fresh vegetables bags = $24

Ben & Jerry's has free ice cream day. Unfortunately, the closest by me is Philadelphia.

Walgreens - get All detergent - BOGO plus coupons. Kraft Mac and chess is sixty nine cents.

Wednesday, April 6, 2011

Four years

I know it's been awhile since my last post. I have had a busy and emotional week. Today marks the fourth anniversary of Israel's death. The daily life gets easier but anniversaries are still painful. The process begins on April fifth to April sixth. On both of these days I relive it like it was yesterday.

I still remember when the phone rang at my sister's house from my dad letting us know they found his body from suicide. My heart raged, my ears rang and shock went throughout. My three year old nephew at the time cried because we were upset and my daughter just stared at me. I wish people knew what they leave behind by suicide.

I'll still feel pain when it's the fiftieth anniversary. My life is good now and I love Jeff so much. But my relationship with Israel was cut short. I know he loved me and Laura. Laura has so many questions and wants to know him. I do the best that I can filling in the blanks.

Since today is also Israel's birthday, I let Laura celebrate by having a special treat and we said a prayer. I didn't tell her he died today too because I don't believe she needs to know that right now. I try to focus on the positive. I told her that he loved vegetables and chicken soup like he did. This pleased her.

So I take these two days of the year to remember, feel, grieve and be thankful. I do miss him and feel at least we would have been great parents together. I thank him for Laura.

Monday, March 28, 2011

Parenting and disabilities

Recently in the news there was a case about a mother who became physically disabled due to complications when she was giving birth to her triplets. Her husband divorced her and wanted her children to not even know who their mother is. They will be turning five soon and the courts gave the mother some visitation rights.

I didn't really ever think that by having a child would ever mean someone would deem me unfit. When my husband died, I had a six month old baby that was fatherless and so dependent. I admit I was terrified. Many nights I laid awake trying to figure out how I was going to make everything work.

One thing I knew for sure was that I'd never leave her side. Even though I couldn't meet all her physical needs didn't mean I was any less than a mother. Luckily, I had family support and I put together a great friend and employee system. Yes, I still was scared but Laura needed me more than ever. I couldn't give up.

I feel so sad that the woman actually had to fight in court to even see her children. She almost gave her life for them. She might not be able to do everything but to be able to feel them hug her and share time, must mean the world.

Friday, March 25, 2011

Women health issues with disabilities

I just read an interesting article about the lack of support in woman's health issues when there is a disability. I have experience with this first hand.

Getting a pap smear is a normal female test and one we dread. I hate getting them because getting on the examination table is difficult and high. The table is narrow making me nervous that I'm going to fly off. Of course there are no side support or railing either. And then on top of all that, I have to somehow keep my legs apart and stay still. (I get to experience all this on Monday. )

When I was pregnant, I had a difficult time finding an ob that would accept me. They all immediately assumed that the pregnancy would be high risk and wouldn't touch me. I thought I found one and they ended up giving my name to child welfare without my permission. Finally I found the right fit and my pregnancy went quite smoothly and normal.

So, yes, we do need better awareness of health issues and disabilities !

Health and women with disabilities

Tuesday, March 22, 2011

No attendent today

My attendant called off today but of course I didn't know until it was after eight. I often panic when this happens. It's very difficult to rely on others for personal care. People do get sick but still hard.

I let Laura stay home. She had the sniffles anyway. Jeff really stepped up and wasn't angry at the situation. He set Laura and I up with enough food for the morning and afternoon. He also assisted me in getting ready and making sure I had what I needed.

Laura and I played, watched some movies and danced. My Dad then picked Laura up and surprised Zef with taking her to pick him up from school. I went out to dinner with them to O'Grady's.

When I got home my afternoon attendant was here and helped me with house stuff and getting ready for bed. I gave Laura a shower and watched Marmaduke.

Having Laura miss school isn't great, but spending the day together and having support is priceless !

Monday, March 21, 2011

Hips, Child abuse and tid bits from Jessica

My hips are finally feeling the strain of 35 years of sitting in the W position. Unfortunately, it's the only position I can sit to type and do things somewhat independently. I have been remaining in my wheelchair more or the couch but nothing beats independence. Luckily, I've been dictating more of my articles and hopefully soon have a key guard so I can use my computer from my desk.

I'm not looking forward to the day when I can't get around on the floor. I feel so free and like I can take care of myself. In July 2009, I finally learned how to get on the toilet myself in my house from the floor. One of the best things ever after relying on others all your life to take care of the most basic human need.

I have never been great at asking for help. Laura picked up on that trait. I guess life changes and so does our body.

I wrote an article today about child abuse prevention. Child abuse is a huge pet peeve of mine. I even cringe when I hear people yelling at their kids in stores.

Children are so valuable but often are treated as a half of a thought. Laura isn't a perfect child but I respect her dignity and opinion. I discipline her with her best interest in mind. I don't discipline out of frustration or anger because that doesn't really teach.

Laura swam today independently by holding a noodle in swim class. I was very proud of her. She also made fruit salad in cooking class. Ok, time to give my hip a break.

Saturday, March 19, 2011

Full moon and Red Lobster

I used to not believe the whole full moon myth. However, once I realized that Jeff and I have our worst arguments during the full moon, I believed differently. Now that I know this, I look at the calendar to prepare.

This time I knew it was this weekend so we both are careful. We have had a few minor disagreements though. We handled it and moved on.

Thursday night we went to the Trappe for St. Patrick's Day. Jeff's parents took Laura after we met them for dinner. They missed her. A local band played at the Trappe so we decided to go. It was, of course, packed. I felt slightly nervous because drunk people respond strangely when they see someone in a wheelchair. However, I'm friends with the band so I felt pretty confident between the band and Jeff.

We had a great time and I danced like crazy. I hardly drank alcohol. I don't need to to have fun. Jeff enjoyed himself and we got a couple free shirts. At one point, Jeff left and a huge drunk guy started to get a little too friendly. The band kept watch as well as a fast moving bouncer who saved my phone from being squashed.

The next day we got me a GPS for my van and went out to dinner at Red Lobster. We were given the wrong waiter, the wrong food and Jeff must have had food poisoning because he threw up violently the minute we came home. We won't be going there again anytime soon.

Today I play hockey. Unfortunately Jeff is working but my friend, Grace, is taking me. I'm excited !

Sunday, March 13, 2011

Kindle and Cerebral Palsy

I remember learning to read the book Go Dog Go while sitting next to my father on out living room couch. In fact I read that book to Laura tonight before she went to bed. I like reading, but due to my cerebral palsy, it wasn't always easy.

I could never hold a paperback book. My arms and hands lack the control. When I was at home, I'd sit in the W position and use my knees as weights to anchor the pages. My neck and back would eventually ache but I loved a good book.

At school, the teachers would place my book on a book stand and I'd have a have to ask someone to turn the pages. I read fast so I would feel bad constantly asking so I often re read pages.

When Kindle came out, it was a little above my price range. I kept the idea in mind. I asked for one for Christmas this past year and received it.

Other than the on/off switch being a little hard to do and some of the keys are tiny, I love it. Reading is finally comfortable and fun to do. I wish I had the Kindle in elementary school and up. My life would have been so much easier. But I'm sure glad they have it today.

Kindle 3G Wireless Reading Device, Free 3G + Wi-Fi, 3G Works Globally, White, 6" Display with New E Ink Pearl Technology

Saturday, March 12, 2011

And the world should pause... How does God do it?

It looked like a science fiction movie but was much more real.

Laura woke up early on Friday (around seven. ) Jeff has offered several times that if I woke him, he would take care of Laura. I probably took him up on this offer about four times. She can be headstrong and determined to see Mommy no matter what and she's always so so cute and sweet when she first wakes up, that I just get get up and take care of her.

I normally have Laura shower at night but she nor I felt like it Thursday night. So we decided for her to get one before she dressed. About one year ago, I started helping Laura shower. Before that me and an aide would do it and she would freak out. So when she was tall enough to reach the shower handle, I had an idea.

I talked Laura through the shower. Guess what? No more crying. Showering became much less stressful. Now she plays, washes herself, washes her hair and puts her toys away practically by herself.

So, after Laura was happily in the shower, I crawled across the hall to my office. Keep in mind that I can hear everything and she's in the shower - not bath - so she was safe.

When I clicked on CNN to read the news, I was astonished to learn about the earthquake and tsunami in Japan. Those poor people were hit out of no where. I was picturing parents trying to save and protect their child. I'd do anything in the world to keep Laura safe.

I believe in God. I read all the hype on the end of the world. I can't say that I'm completely sold. However, God must absolutely be the strongest being to sit and watch his children being hurt, tortured or killed. I cringe when Laura gets a small scrape. I want her to get her ears pierced but don't know if I could stand the pain watching her get poked.

I don't know how He does it. God is even more powerful than I imagined.

Thursday, March 10, 2011

Best toys - Right now

Here are my toy recommendations:

Leapster Explorer from Leapfrog - Very good game playing device from Leapfrog. You can put on videos, ebooks and games. All are educational and fun.

Dollhouse - Laura loves imagining with her barbies and dollhouse characters.

Barbies - Barbies encourage imagination and an outlet for her to work out her emotions.

Ipod Touch - You can put on an endless supply of fun and educational games. Great for going places too so they don't become bored.

Books - Can't go wrong with a new book!

Play doh - Laura loves modeling and pretending with play doh.

Paper & paint - This might be a little messy but well worth the effort.

Tuesday, March 8, 2011

Strep and craziness

I have strep throat again. I have had it several times throughout my life. This time it seems a bit more painful. It started out on Saturday and I got to the doctor's yesterday afternoon. Today is my second day on antibiotic and I'm still having pain when I swallow. My attendant already called off tomorrow because she has it. I'm understanding but still annoying because I didn't miss a beat but thank goodness Donna can come so Laura doesn't miss her book club class and her spring craft class.

Laura has been interesting lately. She spent a lot of time in the corner yesterday for not listening and yelling. Today was more of the same. She often talks back like a teenager. She is so sweet, smart and funny. Then she can turn into a little monster. Yesterday she threw a tantrum because she decided in the middle of the parking lot that she wanted the zipper on her jacket zipped that second.

Her vocabulary is so mature that sometimes it's difficult not to laugh. She'll say, "I need to tell you something. I made a decision to do things my way. " I'm thrilled she's so smart but it makes discipline hard.

Speaking of discipline, Jeff and I weren't always on the same page on how to handle behavior. So I printed up her routine and rules. Now no matter what his schedule, he knows what is going on when and her rules. He let me do the rules because I'm with her most of the time but he gave me his input too.

Laura went out with Israel's family last night. Certain members of his family and I aren't seeing eye to eye at all. It came down to me actually not being invited to a family function. I debated on letting Laura go but she loves her cousins and uncle. But all this drama is sure going to make future family events challenging.

I don't like drama but I'm not a push over especially matters that concern my daughter and family. She is my number one priority and always will be.

Tuesday, March 1, 2011

Growing before our eyes

Laura will soon be four and a half. It's amazing to watch her change physically, emotionally, spiritually and intellectually.

Today I noticed that her pants were not fitting quite right and her shirts seemed a little tight. Keep in mind that she isn't big by no means. She is barely thirty pounds but is getting taller and longer.

So when she was in pre school, my attendant and I went shopping at Kohls. I like Kohls because the clothes are decent in quality, fit and style. They always seem to have a sale going on. I didn't go overboard but I bought some shirts, pants and tights.

It was such a strange feeling to shop in the real girl section opposed to the toddler section. I felt sad in one way because my baby is getting older and now clothes will be bigger and of course more expensive!

After I picked her up from school, had lunch, played outside - we went in her room and took out all her clothes from her closet. I picked which ones were just right, too big and too small.

The too small pile is always somewhat depressing. I remember exactly when she wore things and so on. I did the same with her shoes.

A long with growing physically, she's learning more about God and having a greater understanding about people and love. We are reading a chapter book now and having discussion about what happened. She's learning to write and put sounds to letters.

I know even adults evolve daily hopefully to the better. But seeing a child change into an extraordinary person is a wonderful gift.

Monday, February 28, 2011

Suicide never goes away

Some people might be under the assumption that I'm over Israel's suicide. The fact is you're never over it. Suicide is the black cloud that never leaves because the outcome can never change.

It'll be four years in April. I struggle with wondering if I had done anything slightly different what would the result be? I left with our daughter because of fear. I never expected he'd kill himself. I knew he would be upset but made it clear that he should always be involved in Laura's life. I left because I was tired of living a life in fear and anger. But now I pay in having to explain to Laura the he left by choice.

Several times a day sometimes I play out the scenario and my mind plays the "what if" game. I feel terribly guilty and then relief that the fear is over. Then I feel sad for Laura and sad for myself because I loved him no matter what. There was no closure, no note and no I love you (something we said throughout the marriage - a million times. )

I did find love again but never will the hole that Israel left be filled. He was not a bad person but he made some terrible decisions. They will last an eternity.

It's a long road. Luckily, Jeff lets me openly talk about it and asks me questions. It can't be easy on him living in the shadows of suicide. Of course I have increased trust issues and spent the beginning of our relationship trying to push him away before he abandoned me. He stood strong and daily tries to show that he isn't going anywhere. Hopefully, one day, this damaged heart will truly believe it. We both know it is trying hard to get there.

Monday, February 21, 2011

Hockey... yes seriously.. hockey

I went to an Adapted Sports Expo in West Chester on the day before Valentine's Day. I didn't know what to expect. I went mainly because of my job and because I do have a disability and like to be active.

Laura went to my Dad's because my sister was going to have a Valentine's Day party for her and my nephew. Unfortunately, as the day went on, Laura got sick and the party was postponed. My Dad took care of her though.

The Expo had several groups aimed at people with disabilities. Each group held demonstrations and allowed people to try it. I remembered playing hockey in gym class when I was in special education but that was when I was ten. They tapped foam hockey sticks to our chairs and we played.

So when I first entered the Expo, they immediately told me that there was a power chair hockey demonstration going on. I went and talked to the leaders. I was pleasantly surprised to learn that they play around where I live and they would like more players.

I also like the fact that they were mostly physically challenged. Not that I'm against mental challenges but it's nice to be around people that you have something in common with. They invited me to come out and play in the next game on Saturday. I said yes!

Jeff took me to the game. For us, it only took about a half an hour. Others traveled over an hour. We chuckled at the sight of so many wheelchair vans. It's different to see them all in one place. I felt nervous and excited. I didn't want to make a fool out of myself.

When we went in, a woman remembered who I was and asked if I wanted to play or just watch. I enthusiastically said I would play. She got one of the coaches to hook up a hockey stick to my wheelchair. I would be playing defense.

For the first time, I admit that I played pretty well. The people said it too and I think they meant it. Jeff said he was proud of me and it felt great to have him there supporting me.

So now I'm a full member and am actually looking forward to the next game in two weeks !

Yes, mom has a disability

Laura is noticing more and more that I am not like other mothers. Her questions and empathy are amazing but it's still hard to explain. The nice part is that her teachers at the YMCA don't treat me or her any different.

I think it's cute when she says cerebral palsy. She says that I am cerebral palsy. I'm beginning to explain more in depth that not everybody in a wheelchair has cerebral palsy. That there are many other disabilities that exist.

She asked me how I got it. This is a tricky question to answer because I don't want to scare her. My cerebral palsy came from doctor error. So I explained that the doctor made a bad choice and had a mistake. She asked me where was he now? I told her that he had died a few years ago. Her response was "That is good since he hurt you. " I laughed to myself and tried the best I could that even when we make bad choices we should be forgiven and forgive others.

Last night I helped her open a box of candy. She was doubtful that I could open it. When she is doubtful, I try that much harder. I did get it opened and she said," Great job Mommy! Many people can't open that but you could !" It's her way of showing me that she knows things can be difficult for me but I do it anyway. I think and hope when she sees me try hard that it encourages her not to give up too.

I recently joined Philadelphia Power Play. It's a hockey team for people who use motorized wheelchairs. I played my first game on Saturday and enjoyed it. I'll talk more about it in another blog. I didn't take Laura yet because my dad had her, but I'm curious to see her reaction to everybody in a wheelchair like mommy. It should be interesting !

Monday, February 7, 2011

Animal Kingdom

We all went to Animal Kingdom on Saturday because we figured it would be less crowded. We got there a little later than planned but only by an hour. Laura was very happy to go and it was the first Disney park she experienced. I was there twice before.

The first thing we did was the Safari ride. They have a vehicle if you choose to stay in your wheelchair but you're also fine to transfer if desired. I decided to stay in my wheelchair because I felt more comfortable and why make Jeff transfer me if he didn't need to?

They secure the wheelchair much like in a wheelchair accessible van. The ride is much like a real safari with free roaming animals. The roads are bumpy and hilly. The ride isn't scary. It is adventurous.

Laura enjoyed it a lot. She was fascinated by driving through big puddles of water. She liked seeing all of the animals especially the new baby elephant. I made sure that Jeff held onto her because even though I doubt she could fail out, being a mom, I just wanted to make sure she was safe.

After that we made a terrible mistake. We went to see It's a Bugs Life. Of course they warn you when you get in that it might be too much for people who don't like loud noises,the dark and intense special effects. However, by that time we were already inside and ready to go in. I felt fear that Laura wouldn't be happy but I prayed for the best.

Laura hated it. She was terrified of everything. I admit it was even a bit intense for me. It was 3D and you could feel stinging, drops of water and puffs of air. There was a huge bug out to try to kill the audience with bug spray. She was angry at me for taking her to it and I tried to explain that I didn't know it was going to be like that.

After we left that show we noticed that they had an area where children could meet the Disney characters. We quickly went over and it was a much needed distraction. She met Mickey, Minnie and Donald Duck.

The best part of Animal Kingdom was The Lion King show. It's only thirty minutes but it's fun, interactive, full of fantastic music and great acrobatics. Laura said it was her very favorite. She also did the dinosaur spin ride with Jeff.She thoroughly enjoyed the Jungle Parade. I liked the Finding Nemo show. Laura seemed indifferent. For both shows,you can stay in your wheelchair.

Jeff and I didn't do the roller coasters. I wanted to do Dinosaur,but we ran out of time. That was okay because we had a great time. The weather was perfect-in the high seventies and sunny.

Sunday, February 6, 2011

Magic Kingdom - Day One

Going to the Magic Kingdom is a outrageously fun experience for anyone. Jeff and I took Laura along with Jeff's parents. For a four year old going for their first time they have no idea what to expect. We told her about how all the characters live there and about the rides. She watched many YouTube videos with Jeff's father but still seeing is believing in this case.

Jeff had been to Disney world several times since he used to live in Florida. I went three times prior to this trip and love it every time. I like how everything is accessible but also I love the parades,rides and happy atmosphere.

The secret to taking a four year old are three things: plenty of snacks (we took apples, carrot sticks,fruit snacks and granola bars),a stroller,and extra clothes. Other than that, it wasn't bad at all. She slept in her stroller usually in the mid afternoon and ate throughout the day.

The first day we went to Magic Kingdom we took the ferry over. It takes a little longer but it makes seeing the castle more dramatic. We arrived shortly after the park opened. Laura was excited and so were we.

When we got into the park, we rode the train to get an idea of what the park had. The train can take you in your wheelchair. After that, the first ride we planned to go on was the People Mover. We got in line and I had to transfer into a manual wheelchair. When we arrived to the ride,Jeff realized that it wasn't the ride he thought. We were at a rocket ship ride.

The rocket ship ride went around in circles at high speeds. You can make the rocket ship go up and down . I knew that I could never do that because I get sick going around in circles especially at high speeds. So I told Jeff that he should just take Laura. Jeff's mom opted out of going too so we watched. The ride went very fast and Laura loved it. To this day, she said it was her favorite.

After that ,we did just about everything that we could with Laura.For rides I couldn't do or opted out of, either Jeff or his parents took her. She enjoyed going on Dumbo and the Tea Cups. We all did Small World,Jungle boat ride, Mickey Philharmonic, Monster Laugh,Buzz Light Year, Carousel of the Future, Camp Mickey and the Winnie the Pooh ride. All of which I could stay in my chair except the Pooh ride.

When Laura did the Swiss Family play area with his parents,Jeff and I wandered to ourselves. Jeff convinced me to ride the Big Thunder Mountain roller coaster. I have always liked roller coasters but as I get older, I realize that I can get hurt and I want to be in top health for Laura and Jeff. But I also want to live life to the fullest. I decided to try it.

To our surprise, they let us ride twice. I was hoping that I'd like it. Jeff had to transfer me into the seat. Luckily, Jeff is strong and I'm petite so it makes transferring easier. He was able to sit next to me and we had a pull down bar to hold us in. Te ride is very fast and twisty. I did feel a little scared but I knew I was safe. I probably wouldn't recommend it to someone with balance issues to sit by themselves. However, if you have someone next to you, you'll be fine.

Laura did not do Pirates of the Caribbean because of being too dark. I also didn't think she'd like the Haunted Mansion or bigger roller coasters. Space Mountain was out of the question for her but Jeff and I did it the second day we went.

Laura also met the princesses and characters. She really enjoyed that.

We stayed at the park long enough to see the night time electrical parade. Jeff and I found a spot to see it well because it was blocked off for people in wheelchairs. Laura was amazed by the big floats and the characters. Afterwards, was the fireworks after a visual show on the castle featuring pictures of people throughout the day.

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...