Thursday, May 26, 2016

What an accessible playground would do

When I was young, an accessible playground wasn't heard of or a thought.  I would sit on the sidelines and imagine being on the playground but that's all I could do -- imagine.  Now imagination has become reality for many playgrounds with only one roadblock in the way which is money. Accessible playgrounds are possible, but sadly, they are expensive. 

My town is in a contest to have one of our local playgrounds become an accessible playground. This will allow any child to have fun and be included. This will allow parents that have disabilities, like myself, to independently accompany their child to the playground. No more sitting on the sidelines but being in the action.

If you read my blog always or a new reader today, please do me a favor and click on the link to vote.  You can vote today and tomorrow. Then if you're kind enough, share the link or maybe this post to your social media sites to continue getting the votes.  

You aren't just helping me and my children, but many children and parents after me that can enjoy and participate. Voting is easy and you'll feel great helping others!

To vote, please click 
Vote for accessible playground


Monday, May 23, 2016

End of May with kids

Where did the time go? I can't believe it's May and the school year is almost over. Laura will then be a fourth grader and Jason will be a pre schooler.  So much happened since September, but one thing remains the same which is our bond of love.

Jason and Laura have learned many new things and matured.  Laura has learned how to juggle extra curricular activities with homework and time for herself.  She learned that sometimes you need to stop an activity because it's too much.  She is now a green belt in karate and soon promoted to first degree green belt.  Laura struggled with math this school year which is one of her strongest subjects in testing.  She has worked hard and met goals that she set. Laura has even strengthened her vocabulary and reading levels that were already high for her age.  She completed the Harry Potter series amoung many other chapter books.  Laura has had high honors and honors all year.

Laura has blossomed socially and in shyness. On her own, she joined a city wide spelling bee and hung in there strong.  She sounded great on the microphone.  She performed in dance and choir recitals.  Laura had friends sleepover and slept over friends houses.  Laura is an amazing big sister.  She loves Jason so much - too much at times but he lets her know.  Laura handled my breast cancer diagnosis stronger and with more grace than I ever imagined. She wanted to know everything and was there each step of the way with love and concern.

Jason has also made tremendous strides this school year.  His vocabulary and sentence structure has increased considerably.  He can count, recognize numbers, has a terrific memory, looking at books, imaginary play, learning how to be kind to our pets, being social. He can now dress himself including shoes.  He's still working on the potty but I know he will master it soon. Jason has friends and plays nicely.  He helps with simple tasks around the house.  Jason likes to help me and we play everyday.  

Jason uses interesting terminology.  When he is on the verge of needing a time out, we count as a warning - 1-2-3.  Well, one day, he said,"don't talk numbers" and "we aren't talking numbers today!"  He likes to see the lobsters at the grocery store and a fanatic for lollipops. Jason loves cars and trains.  Most recently, he's into the transformers.  Jason has a great sense of humor and can make anyone smile.

We've had lots of ups and downs this year.  I found out I had cancer after a long line of tests then a biopsy. Then they thought they had it all, only to find out I had more resulting in a lumpectomy and eventually a bi lateral mastectomy.  That is all behind us now and I'm doing great.  We had to put our beloved Lucky to sleep.  She was a dog I've had for 15 years.  Then, we adopted Sasha who is spunky and cuddly making us all smile again.

Jeff graduated nursing school and soon will be completely licensed.  Our marriage has been through many tests and great sadness.  It hasn't been a complete honeymoon but we pulled out from every fire stronger and wiser.  Our underlying love is always there but need to keep it nourished with any time we can.  We are on the same side even if every disaster wants to pull us apart.

I still have the same attendants who have stood by me through the darkest times.  They helped take care of me and my family.  Never let me down or waivered even as my needs changed medically.  I'm forever grateful them making me independent and strong.

I think we are all looking forward to a relaxing but enjoyable summer!


Wednesday, May 18, 2016

Dear new mom with a disability

Dear new mom with a disability,

Becoming a mother either by choice or chance is a huge responsibility for any woman. You instantly become a protector of the little life given to you. If you have a disability, parenting has gotten more challenging but not impossible or overly difficult.

You know your capabilities and incapabilities more than anyone. Use that to your advantage, but never fear of trying new things. I have cerebral palsy which leaves me to have involuntary movements. When my son asked me to put a straw in a juice box for him, I knew I had to at least try. It might have took me a few minutes as he sat patiently waiting, but I did it. He applauded me with a huge smile. I have changed diapers and fed them bottles in my way. Being a mom gives women extra super powers, and we are no different because we have a disability.

I learned with my oldest child that being a good mom isn't about holding the baby, feeding the baby or changing them. Don't get me wrong, all of these are very important and necessary. But if you can't do them and you need help getting it done, you are not inadequate. Being a good mom is about making good decisions, organized, love, time, and patience. Also, with a disability, add creatively to the mix and humility. Even though your child might not run to you to be picked up, they will come to you for your love, time, and internal strength.

There will be days where you feel helpless and exhausted. Don't worry - every mother feels this way from time to time. When these days occur, pick yourself up and remind yourself that you are the only mother they have and be the best you can be.  No one is perfect but as long as your child is healthy, happy, safe and loved then you're doing what you need to as a mom.

Enjoy each moment because time goes way too fast. Learn new things together. Your child will even forget about your disability and just enjoy life. As they get older, you might want to give them words to express when their friends ask questions about you. Children are way more open to differences than adults so don't worry.  They won't be unpopular because their mom has a disability, trust me. 

As you embark on the motherhood journey, remember to love unconditionally, think creatively and be your child's biggest fan. You'll do great and one day in the far off distance, you'll be a grandmother!  


Laura and Jason's mom who has cerebral palsy 


Wednesday, May 11, 2016

Cancer seems to change everything

Before knowing that I had cancer, I cared about cancer patients, but I didn't feel a deep connection like now.  Before my bi lateral mastectomy, I tended to almost forget I had cancer until decisions and tests were needed to be made. Now after surgery, it's hard to forget about cancer, but easy to have gratitude.

About two weeks ago, Laura and I took a walk to a nearby high school where they were holding Relay for Life.  I went to this before, but now going has a deeper meaning and connection. The feeling when you enter both makes you want to run or stay - run because you want to forget about it and stay because you know you can't. When my late husband died from suicide, I went to a suicide survivor group and they said this is the hardest group you'll ever join.  Now I have two hard groups but know life goes on from both.

This past Sunday marked my one month anniversary of having surgery.  I'm so grateful to be here writing today and not in a hospital. It feels fast and slow all at once.  I remember a lot about that day but especially how weird it was lying on the operation table with two surgeons and a group of nurses standing around me  waiting and watching as I fell asleep.  Someone in the room held my hand and asked me where my favorite vacation would be, and I said Florida.  They told me to think about that and in moments I was asleep. I had faith in the doctors but nervous of the pain and appearance afterwards. However, thinking about Florida and Disney World helped my fears go away.

Now that a month has passed, I'm beyond grateful for how many things I've regained. I can do most things that I could do before plus being lifted into my wheelchair as before.  As for pain and discomfort, both improved but are still with me. The reconstruction resembles me, but doesn't feel like me yet.  My skin is sensitive to fabrics, and since I move around quite a bit due to cerebral palsy, I always feel it unless I'm totally relaxed.  Sometimes I wish I could just pop them off to give myself a break, but I can't.  I'm hoping that in time, they will feel more natural and less painful.

I'm also grateful for everyone that helped me and my family.  The meals, prayers, and encouragement were so remarkable and not forgotten. Cancer does change everything but not the power of love, hope and resilience. 

Celebrating Mother's Day

I recently learned that Mother's Day began as a way to stop people from going to war. The idea was to remind people of all of the pain mothers endure when a child dies in war.  To me, Mother's Day reminds me of my mom, being a mom and my grandmothers.  The kids told me Happy Mother's Day and I thanked them for making me one.

Parenting with a disability was pretty much unheard of when I had Laura almost ten years ago. Now, parenting with a disability is a lot more common.  I always knew one way or another, I would be a mother one day. Even if it seemed impossible with cerebral palsy, motherhood was definitely in my path. Now I have two beautiful children who have made me laugh, cry, and experience joy like no other way possible.  It's hard to imagine my life without them even when they aren't the most cooperative sometimes.

I had a very nice Mother's Day.  Jason gave me a pink gift bag with chocolate, two tshirts, a sweet card and a warm smile. Jeff took Jason shopping two days prior in the pouring rain.  He enjoys picking out gifts.  He eagerly helped me get each thing out of the bag and proudly opened my card.  Then he asked me for the candy. Typical three year old boy!

After Mass and breakfast, Laura gave me her gift to me which was a pretty glass apple sitting on a wooden stand with a saying on it - Thank you for all you do.  I remember when she got it. We took a walk to our neighborhood pharmacy that also has all kinds of neat gifts. Before we left the store, Laura asked me to stay in one place. She bought the gift for me and they wrapped it for me.

When Jeff came home, he helped Laura with a project.  They were working on it for almost an hour and then surprised me. It was a red rose made out of Legos. She picked it out when Jeff's mom took her to a Lego convention a few weeks ago.  Roses are my favorite and Laura knows this.

That evening we took my mom out for dinner.  My mom had been a huge advocate for my independence. She pushed for me to have my first motorized wheelchair when I was seven.  We might be very different people, but I can depend on my mom whenever I need her.  Jason and Laura are crazy about her and they always laugh hysterically together.  I'm very thankful for her help and pushing me to be as independent as possible.  We only have one mom and I love her!!

Everyday is Mother's Day to me.  Laura and Jason make me so happy plus challenge me in many ways which I love.  Last night Laura gave me a big hug and had some tears.  She felt overjoyed that I'm feeling pretty much back to myself and doing things that I used to do.  Even though she gave me a hard time about cleaning her room, I believe Laura felt pleased I was back giving her more structure. All kids need boundaries even when they fight you on it.

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...