I remember someone said to me that my life was very easy. I looked at them with a puzzled expression because I'm not one to complain, but easy isn't what I would describe my life. I asked them for more clarification on why they would say that. Their explanation was quite simple but extremely surprising to me. My life is easy, according to them, because I have personal care attendant services and they do everything for me. This was also said at a time when I was a single mother to my baby daughter after my husband had unexpectedly died. They went further to say that I wasn't a true single mother because of my attendant care.
I would like to take this opportunity to shed some light on the reality of personal care attendant services are like and the regulations in my state of Pennsylvania. I, and the thousands of others that need personal care, are truly blessed to have services that help us not only be independent, but to be healthy, safe human beings. Without attendant care, I would fend for myself while my husband would be working which means I would go hungry, thirsty and not be able to use the bathroom. I am pretty sure that I would manage to survive, but my quality of life would greatly diminish.
However, personal care attendants aren't maids that just do everything for you. They're people that are like anyone else that work to assist you in what you can't do. Everyone has a different personality, work ethic, strengths and weaknesses like any employee. But these employees work with you on just being you. They help get you ready, feed you, help with your house and all that comes with it. With that being said, I live a much more structured life than I might like. If your attendant is coming in at a certain time then you best be awake no matter how bad you slept before. You want to do something out of your routine, you best be ready to justify it and hear about it if they might not agree.
Communication starts from the minute you wake up to the minute they are done your shift. It doesn't matter if you're groggy or in a quiet mood because you are the boss. You need to be as present as you would if you're a boss of any company because the company is very important, yourself. I'm not saying this is all bad, but being a good boss from sun up to sundown can tire someone out. Not to mention that you need to be ready with what you want done that day, how you want it done and oversee it being done.
Having a personal care attendant isn't luxury, but it is a necessity. Being a mother also adds another dimension because it doesn't just become you and your children. There's this whole other person who has their own ideas, feelings and thoughts that you need to incorporate into how you handle your child. In a way, you're always on display in a sense. So, yes, if you're a single mother with a disability, it doesn't matter if you need personal care because you're still your child's only parent.
In getting and keeping attendant care going smoothly isn't easy where I live. Every year you are given a certain amount of hours to use and a payroll company handles the pay checks. If there aren't any problems, this method works great. However, I'm going through a situation now that is very stressful. My hours for 2017-2018 were approved back in April, but I just found out that the hours aren't in the system. Therefore, my attendants haven't been paid and won't be paid until they are! No one seems to be able to tell me what the problem is because it has been approved.
So imagine now having attendants that work hard for you not being paid for their job due to unknown reasons or no fault of your own. Stressful for my attendants and on me because I care about my workers. I am also at a risk of losing them because they do need money to live.
Tomorrow I will be back at trying to find answers and praying that my attendants get paid on time. The next time that you might want to think people who have personal care attendants is so easy, please think again. We are all just people trying to weave through this life.
First published on cerebralpalsynewstoday.com by Jessica
When you have breast cancer, sometimes a person might feel a lower self esteem. Why does this happen? Breast cancer causes many issues within your body and your soul. Breast cancer is a harsh reality of our immortality and leaves our bodies scarred no matter what treatment you might need or choose to have. The person that you once were comes out with a new outlook and often a new physical appearance.
Handling yourself will decide how you heal and grow as a person. I have compiled a list of fun and self healing ideas that you can do from the moment you receive a breast cancer diagnosis to the rest of your life. Why the rest of your life? Because even when breast cancer is gone from your body, you are forever affected and changed. Self care and recognition will help you to heal and be the person that you choose to be.
Time, patience and care will get you on the road to recovery.
fiI know that I've written before about what to do and expect if you are getting a double mastectomy. However, as we know, something new and ever changing is right around the corner. I wanted to provide you with some new tips and ideas before your surgery, what to pack for the hospital and how to have a comfortable as you possibly can recovery.
First and foremost I want to say that no matter how you got here in your life journey - you are a remarkable person. You are stronger than you realize and can move mountains with your strength. Getting to this point to undergo a double mastectomy is amazing, and I want you to know how amazing you are. You are never alone in this!
There are several different approaches to handle your upcoming mastectomy. Many women have a Bon voyage party before getting their double mastectomy. They gather with all of their friends and throw a supportive party. Laughter and support can help anyone going through a double mastectomy by reminding you that you aren't alone. Another way is doing what makes you happy and calm. I spent the day getting everything ready, going to my annual dental appointment, and went to a play with my daughter and father. That night, I hung out with my husband relaxing by watching our favorite television shows. Be true to yourself and whatever relaxes you.
Here is my suggested to do and to buy list:
Make sure you have family care taken care of. This means if you have children, make sure that you have them covered. My family took care of mine for a few days when I was in the hospital. I felt good knowing that they were both safe and being well cared for.
Meals are the last thing you will want to think about as you are recovering. There are many online services that will allow friends and family to sign up to bring dinner to your house. I did this, and it not only gave me piece of mind that dinner was taken care of, it gave me an opportunity to see friends and family. My children enjoyed seeing our visitors and having the dinner variety.
Buy plenty of pillows to support yourself. After a double mastectomy, doctors might tell you a specific way to lie or sit. For example, I wasn't allowed to lay on my side or stomach for awhile. I thought the not lying on my side would be difficult but with the right pillow support, it was not so challenging. I'd also invest in a wedge pillow because you can sit up a bit while lying down.
Hair products were a big deal to me. You can't get a full shower or bath for at least a week because of the drains. My mom bought me dry shampoo and it came in very handy to me. I also made sure that I had plenty of hair ties so my hair didn't annoy me.
I suggest getting anything that will make your life a little easier. Tumbler cups with straws so you can have a drink with you at all times. An electric toothbrush because moving your arms will be difficult at first. Chapstick, lotion, baby wipes and body sprays are excellent ways to keep you feeling fresh. I bought a Kindle thinking that I would have a lot of time to read. For me, the medicine wore me out so much that I slept a whole lot. But I'm glad I have my Kindle because I use it all of the time now.
Make sure that you have surgical mastectomy bras because you'll need them. Buy some roomy button down shirts since they're easier to get on and off. Comfortable and easy to wear pajamas are essential when it comes to comfort and ease.
I hope my advice comes in useful to you! Originally published by Jessica on Breast Cancer News Today
Free time doesn't come to me very much. Or, I should say that I don't let it happen to me. I often feel like I should be having free time because I should be working. However, when I do take the time to relax, these are the things that I enjoy.
January is a new month and year which makes a whole new start. Having cerebral palsy shouldn't stop anyone from making new year resolutions. I like Christmas time, but I also always liked opening a brand new calendar to write down my New Years resolutions. I rarely complete all of them, but writing my goals down helps keep me on track. Having goals keeps you moving ahead and obtaining achievements. Big or small resolutions doesn't matter as long as you make them and not give up when they start being difficult.
Here is a suggested list of new year resolutions that might inspire you to make your own. Don't ever be afraid to reach high for goals. It doesn't mean you have to complete all of them, but puts you on the fast track of success.
Look back at the previous year and see what you can improve on or complete. Is there a bad relationship or unhealthy friendship that you should end? A bad habit that you are ready to drop? Maybe you have things that you need to finish but you kept putting it off. Now is the time to tie up any lose ends so you can move on to a new beginning.
Not being able to walk or physically do something gives people the perfect excuse to not exercise. I know because I've done it too but as long as you can move at least one body part, you can exercise. Call your local gyms and YMCA to see if they have any exercise equipment that you can use. Perhaps they can order it for you. Join an exercise class and do what you can. Stop the excuses because we all know having a disability doesn't mean you can't exercise. It only means that you need to adapt your routine.
Get all your medical appointments scheduled and actually go to them. Having cerebral palsy can make going to the doctor feel exhausting. However, putting off serious tests can have very dangerous results.
What are your professional goals? Sometimes disabilities can make us forget that we do have value aspects to contribute to society. Technology and the Internet has made career goals so much more obtainable. Ignore the fear and just do whatever it is that you love. No more excuses because life is too short to waste.
Love more. When I say love more, I'm talking about loving others and yourself. Are you in a relationship that gives to you what you deserve? Are you giving to the relationship what they deserve? Thinking about others, making time and helping others are the way to happiness.
Get aquatinted back to physical, occupational, and speech therapies that will improve your life. Therapy might be hard work, but it also pays off. No pain, no gain and that is the simple truth.
Choose happiness. Getting wrapped up in self pity and laziness are just too easy to do. Happiness isn't a gift from someone else. Happiness is a gift you give yourself every day. If you're a miserable person, then you tend to attract miserable people into your life. However, if you choose to find joy in life, you'll attract joyful people. Do things that make you feel happy. Let go of thinking everyone is out to get you. Look for the good in people instead of the bad. Drop drama and make the right choices so you avoid drama. Be happy.
I hope you have a pleasant, successful, friendly, and happy year. Focus positively and look on the bright side. Smile and open your hear to love, forgiveness, and hard work.
originally posted by Jessica Grono on Cerebral Palsy News Today
If you know me, you might think you may know everything there is to know. But everyone has a few things that you might or might not know about them. Here is a top ten list of things you might not know about Jessica Grono.
Preschool age children are so much fun, and their little minds are going full blast. When a child has cerebral palsy, the fun doesn't need to stop. In fact, they need the stimulation and experiences perhaps even a bit more than someone without cerebral palsy. Love, time and creativity always goes far with children.
Being a parent to a child with cerebral palsy can leave you wanting ideas to help your son or daughter. I compiled a list to help give you some ideas to use with your child as soon as possible. My main bit of advice is to use trial and error. Sometimes what doesn't work one day will work the next day, week or month. It can take awhile to get muscles and brain working together. Have patience, flexibility and commitment to make this process enjoyable for the both of you.
Any time that you can give to your child is so valuable. Activities that keep them moving, reading, and mind stimulating are brilliant to use. Giving them an abundance of love and room to grow are the main things preschoolers need no matter the ability.
originally published by Jessica Grono on Cerebral Palsy News Today
My very sweet daughter, Laura, received this ransom. I hope she can comply because I'm sure her electronics miss her as much as she misses them.
Your IPad and iPhone are being held hostage until you meet MY demands:
Only after all are complete without complaint and checked by me, you can have electronics back.
I Right now I'm sitting on the floor of my hallway with my ten year old daughter in front of me and my four year old son behind me. We should all be in bed, but there are thunderstorms all around us. I blame my cerebral palsy as a main reason why I hate thunderstorms but also several bad experiences with them. I tried hard not to push my fear on them, but it just happened naturally. Laura actually is okay but she's cuddling with our three year old hound dog and keeping us company.
Laura is an excellent sister. When the storm started, she told Jason that God was bowling and had him play bowl in the kitchen as a distraction. Somehow we all ended up here but it's cozy. My lab retriever, Lady, is sleeping at my side. Jason is playing with his truck and watching his iPad - PJ Masks. Laura is watching craft videos. I love our conversations like Jason saying, "Mommy, my monster truck is sad." I told him to tell him everything is ok and he did. I love reassuring Jason and his eyes relax from panic.
Although I know I'll be tired tomorrow, the memories are worth everything. I went in my room and Jason said ,"I'll lay next to Laura because I love her." Then he said if I needed anything to let him know. Now they're both in bed even though storms are around, they aren't as loud and hopefully Jason will fall asleep. I'm going to turn in as well and hopefully will sleep peacefully too.
Jason turned 4 on February 20! It's hard to believe that he is four now. Jason can do so many things and is learning more each day. He is completely potty trained even at night. He knows all of his colors, letters and can count to 20. He is very interested in the clock and tells me what numbers the hands are on. He can dress himself including shoes and jacket. Jason speaks clearly and in sentences. He naps about two hours a day.
Jason loves to play. He asks me several times a day, "Mommy, will you play with me?" He is lovable and extremely active. I think his biggest fan is Laura. Jason loves school and his friends. He wishes that he could go all week. He also has swim class which he's not that into.
Laura is doing very well. She will be ten and a half soon. She is getting very good grades in school. She takes drawing, clarinet and ukulele lessons. Laura also is into the piano. She is very smart and funny. My heart explodes when she says she loves me. Her artwork is amazing.