Thursday, March 31, 2016
Tuesday, March 29, 2016
Fear isn't pretty or nice. Fear is cold and the ear piercing silence grips your spirit tightly. Courage melts fear with love and strength, but before courage, there is fear.
My upcoming surgery has fear and courage at a constant battle. I forget, then another pre surgery test comes and then fear strikes when I least expect it. What kind of pain will it be? What will I look like? Will I lose more independence? Did I make the best decision? Will I still be able to mother? And what if the worst happens - I don't survive?
I know all of these questions are slightly irrational, but they are cold gripping questions that wrap around you. Anyone going through a major surgery most likely goes through these questions.
My questions won't be answered until the surgery takes place. Even that's a mystery right now because they are having trouble scheduling it for some bizarre reason. Some part of me wishes it would never be scheduled and the cancer disappeared. Not likely, I know.
After every fear comes courage. But if you know someone in fear, be there. If you know someone in fear, they aren't looking for your answers or how you are going to handle it. I don't want to know how you would deal with it or tell me not to feel my emotions at all. Hug them, let them feel what they need to, tell them that you hear them and love them. That's all they need - not answers to questions of unknown, not how you are handling it, and never to suppress emotions.
I know courage will come. It's probably happening as I write, but it doesn't mean I won't feel fear again. Fear and courage go together constantly when facing something new. Embrace it and realize emotions will pass - strength will be the product of the struggle.
Jason has a sweet heart, and he melts mine. Jason loves me and he always has an eye on how he can help me. Well, the other day, Jason took the cuteness notch up a step.
Jeff helped me get ready for the day on Saturday. When I came out of my room, Jason looked at me, and he said, "Mommy, you're a princess!" That was so sweet and genuine that it made me light up inside.
Jason is always complimenting me and Laura, He also calls Laura a princess and also tells her she looks pretty. I'm blessed to be raising such a sweet boy. Sure, he can be a normal three year old that makes us crazy, but I know that I'm a princess in his eyes and that makes me happy.
Saturday, March 26, 2016
Yesterday was Cerebral Palsy Awareness Day. I've been aware of cerebral palsy all of my life, but I do think it's nice to have a day dedicated to understanding of cerebral palsy. I spent the day doing housework, Easter baskets, being with the kids and going out to a movie with my husband.
Each year I am pleased to see the understanding about cerebral palsy take place at much higher rates than when I was a kid. I was raised to not let cerebral palsy be an excuse for not living my life. Living my life was all the awareness that I had.
I laugh to myself when people claim that they are uneducated about disabilities. No one educated me on someone that can walk, but I don't use that as an excuse to treat them any differently. People who don't have cerebral palsy do things and say things that I'd never imagine thinking about saying. I know people without disabilities that complain over the most ridiculous things, but I still wouldn't dream to make them feel less or not included. So, it makes me wonder, why do those without disabilities think it's okay to judge those without disabilities but it's never the other way around?
When I was younger, I excused people for being unkind about disabilities simply because I thought they didn't know better or somehow I felt they had more power over me. Not anymore. Ignorance is no longer a valid excuse to say mean or uneducated things because there is information galore available about disabilities. The Internet is a powerful place and accessed million times a day - so get educated. People without disabilities sometimes feel like they have more power over those with disabilities. Wrong again. People with disabilities are doing phenomenal and ordinary things just like everyone else. No one is more powerful- disabled or not.
To understand about disabilities isn't needing to know all the technicalities. True awareness is accepting those for who they are and understanding life from their perspective. You can know all the technicalities in the world of any given disability, but if you can't just accept the person how they are and not who you want them to be, then all that knowledge is pointless anyway.
Personally, I like it when people know me as a person. Sure, I don't mind answering questions about my disability or how I do things, but if that's all someone wants to talk about-it rings warning bells in my head. I'm more than an encyclopedia on disability awareness, I'm Jessica. Jessica is a lot more interesting than the cerebellum, I think anyway.
All of these things that I'm about to say are far more interesting, I think, than explaining exactly what a muscle spasm feels like in a conversation. I like Grey's Anatomy and miss Dowton Abbey already. I need convincing to watch a movie because I feel time can be spent more wisely. I like romance to the extreme. I like to eat out and am pretty much a girly girl. I like my quiet time as much as I like being crazy. I adore children but can't stand bad or mean parenting. I can't stand yelling or being a bully when I don't get my way. I'm not into being loud, mean or sarcastic humor. If you have nothing nice to say, closed lips are better. I'm shy for a bit and am very picky who knows my deep feelings. I don't like when people lie especially when it's obvious and habitual. I like the sun and rain but hate snow! I don't procrastinate, I love to clean out closets and clean. I like to be asked to do things and people who accept my limits. I try to give thoughtful gifts to those I care for. My children are amazing and could talk about them all day. My parents and siblings are hilarious and we aren't afraid to laugh about everything. I'm a morning person unless I'm feeling motivated and can be up all night working if needed. I hate nagging, complaining and laziness. I like being needed and wanted because of who I am. Oh, and I usually forget I have breast cancer until I need to schedule an appointment.
Anyway, I got a bit side tracked there, but I hope you know what I am trying to say. Cerebral palsy might be the most visible aspect you notice, but it's surely not everything about who I am. That is truly what a Cerebral Palsy Awareness Day is all about.
Sunday, March 20, 2016
Last week was a chaotic and sad week. Losing Lucky left a void in all of us, but we are healing. Whenever I think about her, I picture her running and catching tennis balls with Jesus and it heals me more. Jason has been asking more and more where she is. I tell him in Heaven with God but he hasn't quite accepte my answer. Laura is doing quite well. Her busy schedule has helped her.
Tomorrow Jeff is taking me to the cardiologist. Why? In my previous surgery, my heart rate has gone up a lot! They don't know why, and since my next surgery is three hours - they want to make sure I'll be okay.
Good news! I do not have a gene that means I'll get cancer again or am at high risk. So, that is a huge weight off of us.
I decided on a bi lateral mastectomy. Big news, I know. I decided on it because getting mammograms and breast MRI aren't easy at all for me. I'm young now and can heal a lot quicker. I also have an awesome support team to help with the kids. So, now is the time to do it!
This week is new and full of opportunity!
Wednesday, March 16, 2016
On May 11, 2002, I married my first husband on a beautiful sunny day. Within a week, I realized my marriage was full of complications making me feel very lonely. My whole life, we had dogs in my home. So, I knew one day, I wanted a dog of my own. In the beginning of my marriage, I often took care of my Dad's dog when he worked long hours. This definitely helped the void but I still wanted my own.
In the middle of September 2002, I started to seriously look for a dog. My sister called me explaining that she knew of the cutest puppy for me. My sister is an occupational therapist and did many home visits. This one family had a puppy named Lucky that was rescued from the SPCA. When my sister mentioned how cute she was, they said that they were taking her back to the SPCA because she was a hand full with already having many children as well.
My sister brought Lucky to our house on a Saturday. She was nine months old - born December 5, 2001. She was the perfect size and black and white. Lucky seemed very comfortable the minute she came in the door. It was easy to fall in love with her. She even sat on my husband's lap, kissed him and in that moment, he said we could keep her.
Lucky was a hand full. As any puppy, she had energy galore. We didn't have a fence yet so she went on walks. I did get a wireless electric fence that worked well too. She wasn't completely house trained which annoyed my husband who already had anger issues. I'd protect her though from any yells and we formed a bond.
Lucky, however, didn't quite respect me in the beginning. When I was alone, she thought it would be fun to pull me by my sleeves and be naughty. There were moments where I almost gave up on her because she hurt me. I was so distraught one day I called my dad. He bought me a long stick. All I had to do was bang the stick on the floor and she would stop whatever she was doing.
Lucky enjoyed sitting with me in my office or laying on the couch. She loved chew toys, balls and bones. On her first Halloween, my attendant and I dressed her as a pink princess. She wanted nothing to do with that! But it was cute while it lasted.
I needed to buy lots of decoration for our first Christmas. My attendant and I went out and bought lots. We came home and dropped them off and went grocery shopping. Crazy Lucky ate many of the decorations and even the glass bulbs. She was ok though.
Early on, I noticed that Lucky was acting unusual in my bedroom when I was in my office. I went to her and thought she was dying. I never saw a dog having a seizure before. I took her to the vet and he said if it happened again within a month, she'd need to be on phenobarbital for the rest of her life. Unfortunately, that's what happened.
I saw many of her seizures through her life. Many were small but some were very scary. Her dosage of medicines increased but I'm so thankful a seizure didn't kill her as I always dreaded. Lucky enjoyed getting her morning and night pill. It was disguised in sausage, ham, peanut butter, treats and in the most recent years, a piece of a hot dog. Lucky wouldn't let you alone either when it was pill time and would stare you down until she got it.
Lucky has an active and fun personality. She'd love to play. Israel, my first husband, would call her sports dog. They'd play tag and ball. She loved bouncing it off her nose like she was playing soccer. Lucky loved lying in the sun but was also an excellent guard dog. Since I sit on the floor, all I had to say was, "who is it, Lucky?" She would stand on the couch and look for me. I could tell who was here by how fast her tail wagged. Sometimes it wagged so fast, I thought she'd propel herself into the air.
Lucky was a blue heeler mix. Her ears were hilarious- when she was alert about something, they would go straight out like bat ears. Lucky hated squirrels and ran after them. When Laura was two, she used to ask why Lucky barked, and I'd say it was because she saw a squirrel. Well, little did I know that this made Laura scared of squirrels for quite awhile.
Lucky was there for me in all the troubling times in my first marriage. We comforted each other and she kept me calm and loved. When the day came when my husband passed away, Lucky was there too. We entered a new chapter together. Lucky also made many friends with each attendant I hired throughout her life. She was well loved by all.
Since Lucky has been gone, memories are still bittersweet. Lucky hated being cold so on really cold days, she would run inside as fast as a rocket and jump in my bed. She loved burrowing under the blankets. Often, you'd just see a lump under the blankets and knew it was her. I loved covering her up when she slept. When I was outside today, I could picture her in the grass and chewing sticks. Also, during spring time, she would race back to our shed to check on baby bunnies. Lucky enjoyed spring and summer by lying in the grass or on our deck.
I loved when she would lie on her back and manipulate her bone or ball. Lucky was so playful and ready for action. When I had Jason, I felt bad because she was in her older years. When she was young, she would've loved playing and running with Jason. She liked kids but not when they cried. When we came home with Laura, she smelled her and wagged her tail. But on extra crying nights, she looked at me like please make it stop. She tried to leave a few times with my attendant at the end of a shift.
Lady came when Lucky was 8. They had a little adjustment but not long. They had very different personalities. Lady is very laid back and just likes to sit next to you and be pet. Lucky just wanted to play. They were good for each other. In the last year, as Lucky's eyesight began to fade, she stayed close to Lady. Lady would lead her to the door to go outside etc.
In the last months, Lucky seemed to be confused, her eyesight worsened and hearing off. She had lost her way in the backyard sometimes and couldn't find her way inside by herself. She would get stuck in corners or chairs. Standing and walking looked painful. Then the accidents happened and became more consistent. I talked to my friend for a long time who is a vet. She listened and asked questions. She said at this point, letting Lucky go was the most compassionate thing I could do. I knew she was right.
On Tuesday morning, I came out to the living room and saw Lucky lying in her own mess. She didn't even know and then I knew that Lucky wouldn't want this and no reason to keep her in pain. At this point, it wasn't for her life, it was because I didn't want to let go. It was time.
Laura and I had been discussing it lately and she agreed that Lucky wouldn't like this. Laura requested that I didn't tell her when and do it when she was at school. Very mature decision for a nine year old.
I called the vet, and glad my friend was close by because once I said she needed to be put down, I couldn't speak and just cried. We set the time and I spent the final hours on the floor with her, petting her. I gave her a hot dog and she devoured it. And I cried. Jason was away at his grandparents and Jeff was available to go with me so the timing was right. She had enough. I could never have enough of her but life in a body can't be forever.
I prayed to God to help me know she was okay. An image popped in my head that she was going to the biggest steak house and could eat all she wanted. She could jump, play and hop on the couch. (She loved sleeping on the couch but became too weak about a year ago.). This image didn't stop me from crying but put me at peace. She would be really happy again and no pain.
I didn't know how far I could get with the process. I'm a strong person but weak when it comes to saying good bye. The staff was extremely nice and understanding. They were gentle and made Lucky feel comfortable. I cried but could answer heart breaking questions. I decided against getting her ashes but wanted an imprint of her paw.
They gave her medicine before stopping her heart that put her to sleep. This is much more easier and suggested by a friend who is a vet. That's their policy anyway. As they put the IV in, Lucky and I stared at each other right in the eyes. Our final good bye before she fell gently asleep. The other medicine worked fast and as she passed, the room fell silent. The vet and Jeff let me hold her body one more time in my lap. They took her paw print and I pictured her happily eating and running.
As a family, the pain is lingering. I forget and call her name. Jason asks me randomly where she is and I say happy in Heaven. Laura cried lots the first night and some last night. Today memories keep popping in my head aching my heart but one day will make me smile. She was the first dog I ever had for fourteen years, and first dog I could be with in her final seconds.
Lady is feeling a bit better today as well. Having another dog is a huge help, but you know the cycle will continue. To love a dog and be loved by a dog is like a sliver of Heaven. You just can't stop at one sliver.
RIP Lucky. December 5, 2001-March 15, 2016
Wednesday, March 9, 2016
Yesterday a couple of geat things happened. The day started out an average Tuesday. Laura went to school and Shawn, Jason and I had a day of errands and grocery shopping. Jeff went to school for more tests.
Jason did awesome when going out. You can tell he's three because he listens better and he's a more patient shopper. I actually miss him when he's not with us. Whenever we go to the grocery store, he has to see the lobsters immediately. I take him, but I can't stand looking at them. I feel so bad, but yes, I shamefully admit I eat them.
After lunch, Jason and I played outside. The weather was above 70 degrees and sunny. Any time that I can get Jason outside, I will. He loves it. When he went for a nap, and my attendant left, I became ridiculously exhausted. I had wanted to do work and writing but I ended up falling asleep for over an hour. When I woke, I felt groggy and worse than before. After Jason woke, we hung out and all took a walk when Jeff came home. The walk perked me up a bit.
Jeff was feeling hopeful about his school tests but was waiting upon a telephone call or email saying if he passed or failed LPN school. Jeff started LPN school in September 2014. It's been a long hard ride for both of us but especially him. He managed to go to school or clinical all day, make dinner, clean up, help me and do the laundry each night. He also worked on the weekends and took me to hockey. In the meantime, we tried to have some couple time and spend time with the kids.
During the walk, he had the idea of going to dinner after Laura's karate class. My dad offered to pick Laura up and bring her to the restaurant and we all ate together. Laura came in with a big bubbly smile. She was so excited to tell me what happened, that her body was glowing.
I let her teachers know pretty quickly when I learned that I had breast cancer. That way they understood if Laura seemed more emotional or not quite herself. Her teachers are wonderful and are like family. Well, her teachers and staff came together and put a gift bag together for Jason and Laura. They obviously knew Laura very well - Journal, adult coloring book, pens and Jason got a book, coloring book and crayola coloring pages. All of her teachers signed an inspirational card with supportive messages to Laura. Reading them bought tears to my eyes.
Then Laura showed me a card that they sent for Jeff and I. It was extremely supportive and signed by everyone. They also sent us a gift card and that had said dinner on us! Again, tears sprang to my eyes. How incredibly thoughtful and wonderful to know that Laura is in such amazing hands during the day.
About ten minutes after we came home, Jeff learned that he had passed all of his nursing courses. Nursing school has finally ended! He succeeded. All he needs to do is pass the state LPN test in a few weeks! His official graduation is scheduled in a few weeks.
Days like these just make the most glittery beautiful memories!
Sunday, March 6, 2016
Jeff and I have almost been married for six years. I still find it hard to believe because we are still learning about each other. It doesn't feel like six years because there seems so much more to learn. Laura was two years old when we met in November 2008. I was in my serious stage of life, and I had a good handle on this single parenting thing. My late husband past away in 2006 so I wasn't new at figuring out the world.
In our early dating stages, Jeff helped bring back a more fun me. He challenged me to think more about my happiness and needs. I challenged him to settle down and think more about others. We've been through a lot good and bad. We hurt and forgive. We learn and grow. We try to change and improve for the better always.
Jeff and I are very alike yet very different people. Deep down our goals are similar but our paths of getting there are different. For example, I was strongly against nursing school for many reasons. I had a sinking sensation when we toured the school. I did want Jeff to better himself but was petrified of the affect it would have on our family, marriage and finance. I never told him not to do it but gave my reasons. He pursued it and is almost done. Now that he's almost a nurse, I'm proud that he did it and looking back on the time, there were plenty of struggles - but we pulled through.
We were both looking forward to the end of school. Our lives would get back to somewhat normal and more family time. Then we were hit hard with my cancer diagnosis. I believe we were both in shock. Jeff even offered to quit school if necessary but I told him no way. He is so close to graduating that quitting wasn't an option.
I remember when we found out that the cancer existed after the lumpectomy and a mastectomy looks like the necessary option. I cried a lot! That night, he held my hand and told me that I can be brave for Laura and everyone else, but with him I should be me. It was very relieving to know that I could say what I needed to, be mad, be positive or just cry and he understood.
He never said that he knows exactly how I feel. No one can know even if someone had cancer. Every cancer is different and affects everyone differently. People can relate better if they did have cancer but no one knows unless you're them.
Now come April, big decisions will be made and then following big life changes. The possibility of losing a body part impacts him second to me so it's hard for both of us. Maybe this is why he became a nurse and the timing in all of this wasn't so bad after all. God doesn't give people cancer, but He does help us with a road map to hopefully make it less stressful.
I'm thankful that Jeff isn't a quitter and works through challenges as I do. We certainly can make it through anything and hopefully in a year from now, we will be planning our next healthy adventure together.
Friday, March 4, 2016
Like millions of people, I've been following Rory's blog about his wife's terminal cancer. It's struck a cord in me especially being 40 and recently diagnosed with breast cancer. I, too, have young children, a loving husband and the best family and friends I could ask for.
Joey's story made me afraid, I won't lie. But, it also gave me courage. She went through all the bad stuff but continued to be true to herself and family. She stayed true to God even through the worst time in her life.
I cried when I read she went home to God today just like I cried when she kissed her daughter for the last time. Thank you Joey for being my inspiration. Thank you, Rory, for blogging. Cancer is horrible but you two beat it by staying beautiful.
A little before Christmas time, my attendant and I took Jason to Kohls. At that time, the store was filled with Star Wars merchandise. Jason kept asking me what different things were, and I'd tell him Star Wars. Well, that started the beginning of his love of Star Wars. He hasn't seen any movie but clips of different movies on YouTube mainly with my Dad.
Jason particularly likes Darth Vader, Darth Maul, R2D2 and BB 8. Jeff gave him a light saber for Christmas with a book. He has really enjoyed them. For his birthday, he received two light sabers and a bunch of Star Wars items. My cousin bought him a book of five minute stories and he loves to look at the pictures.
Tonight, as most nights, Jason said his prayers and started off by saying, "God bless Star Wars..." It was the cutest thing ever. And then he blessed my attendant/friend Shawn and her family. I'm so blessed so many good people are in his life. You know you're good when you're in the forefront of a three year old sleepy boy mind! And always remember, "God bless Star Wars!"
Thursday, March 3, 2016
I've made a few healthier eating changes in the last few weeks. I wouldn't say that I've ever been a bad eater but there's always room for improvement. Since diagnosed with breast cancer, I feel one of two ways (and it varies each day) - eat healthy or eat whatever I want because it really didn't matter - I was diagnosed with cancer anyway.
Luckily, I'm choosing the eat healthier route because I don't want to ever be overweight, and I like feeling healthy. My attendant is choosing to be healthier also. She has a fit bit and everyday she tracks her steps. I'm so happy for her but sometimes wish I could walk too and track mine. They need a fit bit for people that crawl or move differently.
She told me about an app I could get on my iPhone called plant nanny. You put in your weight and it tells you how many ounces to drink of water. It gives you a plant and every time you drink a glass of water, you water your plant. Usually we don't drink enough water, so this is a great fun reminder. I've been doing it since Monday and feel good!
I read the value of eating bananas. Your body gets many great benefits from eating two bananas a day. I usually ate one every morning with my Special K cereal. Now I eat another one as my mid day snack and it feels great too.
We also went to a fruit and vegetable market which has cheaper produce in bulk. It's nice to have fresh fruit and vegetables around and the kids love to snack on it as well.
I haven't been to the YMCA in awhile due to various reasons but want to go back soon. I do stretch and try to do some exercise when possible. I still eat dessert after lunch and few not healthy things here and there. I hardly drink soda but I drink a cup of iced tea at lunch. No need to cut out everything but a few things make a big difference!
Wednesday, March 2, 2016
Jason and potty training. Before he was three, he wanted nothing to do with using the potty. Most kids are excited or a little interested but not Jason. I asked my sister for advice and she said that she told my nephew that at three, all the diapers go to babies and he needs to use the potty. She said it worked great.
With Laura, she was mentally ready and excited but her body just wasn't. It took quite a bit of time with her but she was interested at least. Motivating Jason proved difficult.
So, myself, Jeff and my attendants would remind Jason back in January that no more diapers when he turned three. He even would repeat it here and there. We would reward him with one M&M when he sat on the potty just to make it positive. He got two if he went in the potty.
The day after his birthday party, as promised, we use no more diapers. We do use pull ups at bed time and when we go out for now. When we are at home, he wears big boy underwear. He likes to wear Cars! Last Saturday, we had to buy a better potty that was more comfortable and he will sit on the regular toilet too.
I'm rather impressed. He hasn't really had too many accidents and will tell us when he has to go sometimes. I feel bad needing to remind him and make him sit when he doesn't need too but that's all part of the process. I realize it'll take time for him to master the potty but he's doing very well for a boy who had zero interest even a few weeks ago.
He loves pouring it into the toilet and flush it. He calls it Splash! He even rinses out the little pot himself which is absolutely hilarious!
Tuesday, March 1, 2016
In the early 1980s, mainstreaming or inclusion was pretty much unheard of. It's pretty ridiculous when you think about it. Just because someone has a disability, doesn't make them incapable of learning. Thankfully, our society has made tremendous strides in inclusion since then.
Anyway, I was ten years old and wanted desperately to be included into a classroom that wasn't special education. I told my teacher this and she worked very hard to make it happen. Teachers weren't very welcoming or kind to me in the beginning. I had to sit in the back of the classroom and was basically ignored. Whenever I felt badly, the special education teacher reminded me of this, "Jessica, you're a trail blazer. You're making the way for others after you. You have an important job."
When I look back at my life, I understand her words now more than ever. I was one of the first people with significant cerebral palsy to be included, become a teacher, be a teacher, have babies, Ms. Wheelchair Penmsylvania twice, dance in a dance group, survive death of a spouse, be a single mom and then find love again. I'm seeing a theme and a purpose.
Tonight Jeff and I took Jason for a long walk when Laura was in karate. On our way home, her words filled my mind and set me in a new perspective. Unfortunately, many women with cerebral palsy do not have proper cancer screenings. Technology and the mind sets of medical professionals aren't very flexible with someone with a disability. I'm being a trail blazer again and helping others learn, cope and try. This realization that maybe this is my purpose from God to help others puts me at ease -- even a little bit. I love to educate so here I go.