Tuesday, December 28, 2010

I went to target and some lady asked me if I communicated through my joystick. It's amazing that people are still that oblivious to people with disabilities. We are not aliens. We are just people.

Tuesday, November 9, 2010

November 9, 2010

I told myself that I'm going to write something everyday. It''s kind of a practice for better writing and to get experience.

I'm tired today. I didn't sleep well last night because I let the door stay open and our cats ventured in and out all night long.

Laura had show and tell at pre school today. She took in a black lizzard looking thing. Jeff tried to coax her to take a big stuffed dog. She hasn't told me what happened or any reactions. I'd love to spy on her class!

The shop called me about my van - $1,073! Nice, huh? Luckily, I was able to work out a payment plan. It better be all better now.

Monday, August 9, 2010

Reading Phillies 2010

Jeff is usually off work Fridays and Saturdays. Last week he was off Thursday, Friday and Saturday. It was 95% wonderful!

We were given six tickets to see the Reading Phillies by my friend. We took Laura, my nephew, sister and brother-in-law. We went early because we wanted to go to the buffet first. The buffet was $11 and got you all you can eat for 2.5 hours - hot dogs, drinks, chicken, hamburgers, chips, salads, cookies etc. It was well worth it!

Jeff did amazing. It was me, him, Laura and Zef. Julie and Hersjel met us later due to work. It was above 90 degrees and lots of humidity. I'm good at organizing & keeping kids entertained. But Jeff had to get us all plates and food and drinks - except Zef could on his own with a crowd of people and a very hot 3 year old. He did fantastic. He fed me and helped Laura. I was proud.

Then when we went to our section for the game, a woman who worked there asked if we tried sitting in the accessible seating area. It was right on the field. Our tickets were not for that area but she suggested that we try it.

We all trekked down to the seating area. They saw my wheelchair and let us in. Laura loved dancing to the music, Zef tried to learn the game and Jeff and I were just very happy we could see better.

The only draw back was that area gets hit with lots of foul balls. Strange place to put many people in wheelchairs but at least we could see!

Do what you need to

Jeff and I watched the movie, Catch and Release, last night. Of course it was about someone dying in the first few minutes..the main character fiance. When watching movies like these it makes me remember my late husband, Israel.

The numbness I felt for six months. The unknowing future but knowing that life could not stop. Laura was six months old and starting to babble words, sit on her own and sleep 6 hours a night. She deserved the best because she was mourning as well. I have so many details of that time period that I'm sure I'll share with you during the course of this blog. But these are the main things that were the hardest for me:

1. Knowing that Laura missed her father but I had no way of explaining to her what happened.
2. Singing songs that Laura loved but me and Israel sang together for the first dozen times after he died.
3. Figuring out how to care for her. He did most of the physical part at night and on weekends when I didn't have assistance.
4. Having to turn the light off myself. When I went to sleep in my bed at home for the first time, it felt strange to turn the light off because that was his 'job.'
5. Not being kissed or hugged by him. Not holding hands.

It was all a weird time and not to be forgotten. No one should have to go through losing a spouse but we do and it makes us humnan.

Monday, August 2, 2010

UTI and stuff

I had a crazy few days. My bladder decided to play games and in a matter of 24 hours I had a raging infection. I had a little discomfort one second and then used the bathroom to discover I had blood in a lot of my urine and the pain got worse.

I made a doctor appointment as soon as possible. I was certainly lucky to get an appointment in an hour. They asked me if I could wait until tomorrow but I could not because of the blood. In the meantime, I tried to appear normal as possible to Laura. I feel bad when she worries about me. I called my dad to see if he could spend some time with her as I did my appointment. He said yes!

I really did not want to take Laura because I knew I had to give a urine sample and knew what it looked like. She would have been upset. Besides that, I was taking an attendant who wasn't experienced in the medical aspect so it would be complicated.

To make a long story short, my sample had a lot of white and red blood cells. It looked like cranberry juice..very scary. They sent me home with heavy antibiotics. The pain that night was almost unbearable.

Please drink water!

Wednesday, July 28, 2010

Chocolate party

I could not imagine myself any happier in life except for my teeth to feel better and minus a sore finger. Jeff and I are growing stronger daily. We're not perfect and probably will never be. However, we definitely like to make each other happy and are forgiving when we mess up.

Laura and I had a fun day. I gave Leigh Ann a mental health day because she has a lot going on with her son. Even though it did disrupt my schedule quite a bit, my conscious kept asking me to do so. She was thrilled. So for 4 hours, it was just me & Laura. We enjoyed our silly songs, playing with babies, and I taught her all about gravity and electricity. She created a song about the two.

After dinner, I had her laughing so hard that she had 3 accidents. Then we had a chocolate party (one piece of chocolate and a few M&Ms) and I let her stay up 1hr passed her bed time. She told me what a great day she had.

Enjoying the simple moments make the most memories.

Thursday, July 15, 2010

Why are you in a wheelchair?

The age three has really made Laura (my daughter) ask a lot of questions. Some questions are easy- like "Why can't I touch a hot stove?" Others are not so easy - "When am I going to play with Daddy in Heaven?" However, as a parent, one must sort through your own brain to try to answer young questioning eyes.

A topic that has come up lately in our house is "Mommy, why are you in a wheelchair?" Now it is hard enough to try to explain cerebral palsy to an adult - let alone a child. I have raised Laura as 'normally' as possible. Half the time I think she forgets that I cannot walk. However, now she's more in tune to differences and she wants to learn everything.

The best answer I came up with is - "Mommy's brain had a boo boo when she was born and the boo boo makes Momm'ys muscles not listen to her sometimes." The answer worked for the time being, and she went on her way.

Today we were at Laura's sport class and her friend came over and asked me why am I in a wheelchair? Before I could speak, my daughter very to the point said, "My Mommy has cerebral palsy. It's just a boo boo on her head but she's nice." His mom and myself were stunned and her friend was satisfied.

It's ashame that more adults can't be happy with such simple answers to big problems.

Monday, July 12, 2010


I really do not like thunderstorms. I'm not sure how this happened but ever since I remember, I truly hated thunderstorms. One of my earliest memories happened when there was a really bad one. I think I was 7 or 8. It was 11pm, and my dad sat with me as the lightening lit up the sky and thunder crashed the air. My dad put on my radio and it played "Shout, Shout le it all out these are the things I could do without...."

As I sit here tonight, thunder is crashing. I usually run & hide in the hallway. Even in my thirties. However, I try to be strong for my daughter. She is 3 and so far has no fear of storms. Once she felt a little nervous, and she said "Well Mommy I am only three." I couldn't argue that.

Jeff has also helped me overcome a lot of my fears. I was a very fearful person before I met him. Everyone told me how strong I was before I met him because of dealing with my late husband's suicide, single motherhood and CP. However, I just had to. But with fears, we let them take over our minds. Jeff helped me look at the bright side. Life doesn't have to be full of pain and disappointments. Life can be happy with some sadness.

The fact that I'm still typing as we're in a pretty strong thunderstorm is a true testament to how much I changed. Usually the first sign of lightening I would be in the hallway praying Hail Mary's. It's true that I probably cannot sleep through a storm yet but at least I'm not in a state of panic. Laura and Jeff are fast asleep...

Saturday, July 10, 2010

Why this exists

Hello! Welcome to my little outlet to the world. You might think oh yay another mom blog. Well, you're half way correct but my situation is a little different. I have a disability known as cerebral palsy. Several medical professionals might classify me as severe. I beat most odds and might be a little crazy but never would classify myself as 'severe.'

So, when I decided that I wanted to have a baby, I scanned the Internet. I hardly found any real information on parenting with a disability. It was uncharted territory. Now I know why - when you have a baby you have no time to eat/sleep let alone write about it! Now my daughter is almost 4 so I can have some time to write and possibly educate and entertain you.

Happy reading!

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...