By her amazing Mommy, Connie Masullo
In December of 2013, I noticed my daughter’s knee was swollen. She was 3.5 years old at the time. I thought for sure she injured herself jumping around. The next morning, she couldn’t walk on it. After an hour or so she stopped limping and seemed fine.
The next day she wouldn’t put on weight on it at all and was inconsolable. I took her to the doctor, promised her there would be no shots—just x-rays—to see how badly her knee was hurt. It goes to show how clueless I was going into that appointment. The Dr. told me we needed to get bloodwork and my heart dropped. I couldn’t understand why. He stated he wanted to rule out a few things and thought it was probably a viral infection but, thought that it may be arthritis. He was so cavalier I didn’t expect anything.
We went to an orthopedic who ruled out injury and he said it was Lyme’s disease. He gave us a brace and said to come back in a few weeks if it wasn’t better. It wasn’t anywhere near better and in fact, it got worse. He then said we’d need to see a rheumatologist. This is where denial works great for a person because I still held on to the idea that this was all viral.
The specialists had an 8-week waiting list and I wasn’t waiting! My poor baby could barely walk and there was no way I could sit through 56 more days of that! I called all three specialists daily to see if there were any cancellations. One day, late in December, there finally was a cancellation. Bella and I trekked through an ice storm to get to this doctor. She examined Bella, left the room and came back with a social worker.
I knew then that this wasn’t good news. I am a social worker and they don’t bring them in to tell you everything is fine. The Dr. explained she had Juvenile Idiopathic Arthritis and temporarily our world was turned upside down. While this 3-year journey has brought Bella countless doctor’s appointments, specialists, weekly shots, medicines and physical therapy; we focus on staying positive. It seems I had been training for this moment. Thanks to Sherry Blair, I had a strong background in positive psychology, REBT and NHA®. I knew that focusing on the positive would not only help me cope but would also make Bella strong enough to handle the challenges she faced. As a parent I could have chosen to focus on the fact that she couldn’t go up the steps properly anymore or I can see how she was doing much better than she had the week before. I would take videos of her physical therapy appointments each week to document her progress. It felt good to watch a month old video and see how far she had come.
I also chose to put our focus on all of the blessings around us. We have an incredible support system and huge family. In our time of need we had so many reach out to us and offer support. In addition to countless donations, Bella had an 80 person team at her walk. It was amazing and I spent most of the day holding back tears of gratitude for the support. It felt good to know we weren’t fighting alone.
Bella was enrolled in an amazing preschool that understood her limitations and was able to find the balance of understanding her needs but at the same time making her push herself. We have an outstanding medical team who all talk with one another. I was given the information to the best doctors and physical therapists for Bella and before we knew it after trying about 4, we found the best medication. Today, Bella is living an ordinary life. She dances and was just invited to join a competition team. She runs, she jumps and plays. I’ll never forget the first summer back to the beach after we had been dealing with her pain all winter. She ran after a seagull and I couldn’t stop sobbing. At one point, I felt I may never see that sight again. And even though it felt like the longest period of my life, her pain only lasted 6 months. Some kids have to deal with ongoing pain for years. Bella is doing so well in fact, that if you saw her you would never know.
Positive psychology and NHA® helped us put our attention in the right place but we still had many intense negative emotions regarding her diagnosis. It was devastating to experience and at times I was so angry. Not only did we need to deal with the actual diagnosis but the treatment themselves caused problems. She was and still is at many times sick because her immune system is suppressed from the medications she is taking. She had such a long cold from October 2014-February 2015, that she had to get tubes put in. She has missed countless events she was looking forward to because she was too sick to go. But we used REBT to help understand that things could be a lot worse. So instead of feeling sorry for ourselves (not going to lie some days we do!), we spend a lot of time helping others.
The very first cause we jumped into was helping out the Arthritis Foundation. I serve on committees to help with the local walk and serve on a corporate level. Bella is an ambassador to their Healing Hands Campaign with Massage Envy and we have raised close to $17,000 over the course of 4 years. Our first year at the walk we were a top fundraising team and raised almost $10,000.
Miracle Walk, American Foundation for Suicide Prevention and Parkinson’s Unity Tour
In addition to our work with the Foundation, we support other walks such as the Miracle Walk and Parkinson’s Unity Tour.
Random acts of kindness
We have also strived to perform random acts of kindness regularly. During the holiday season, Bella asks for gifts but we also make a Giving list. This lists about 10 acts of kindness/donations. We have donated toys to children in the hospital, our church and families in need. We have donated turkeys to families for Thanksgiving, food for soldiers and our local food pantry. She also spends time baking cookies for the neighbors and hand delivering them.
She is a Girl Scout and has spent time volunteering and picking up trash.
Dimes for Downs
A student in her class collects dimes in a campaign called Dimes for Downs and we can never find a single dime in the house, our wallet or cars because Bella takes them and adds them to her Dimes for Downs jar. She even has my parents starting their own jar.
Animals and the Environment
She’s passionate about animals and the environment! She loves any animal and wants many pets. Don’t let her see you litter! You will get a lecture about the environment.
Kindness for Christopher
Her most recent philanthropic work is through a movement called Kindness for Christopher. They are an incredible family who lost their son tragically and took their pain to start a movement that is now worldwide! She has painted kindness rocks to bring a smile to strangers faces. She chose to leave hers in my family’s restaurant, Jimmy Buff’s in West Orange, NJ.
Bella’s Uncle Tommy posted this to his Facebook soon after Bella left her rock there: “Cesar, a Newark cop recovering from surgery, was inspired by one of our “Kindness Rocks” rocks at Jimmy Buff’s… My niece Isabella made the rock which says, “Just because you’re hurt, doesn’t mean you’re broken.” He wanted to thank Christopher and Isabella for added strength and support he received today… And I want to thank him for the very generous donation!” It was so amazing to see Bella’s face, knowing that her rock helped someone.
The work with Kindness for Christopher has been a family affair! Jimmy Buff’s has a can collecting money for the movement and it has been donated to causes Christopher believed in. Some months, Bella and I use the money to either make blessing bags for people without homes or chemo care bags for children with cancer. Bella’s grandparents, aunts and uncles on both sides of her family have shown Bella the beauty of working together to help a cause by collecting items and helping to assemble the bags.
She has said over and over how great she feels helping others. I truly believe her struggle has given her the ability to understand other’s pain and a desire to help make change.
Bella is a wonderful big sister and amazing role model to her baby sister, Sophia who also joins in to change the world and spread care and kindness.
Come join us as we make small but powerful changes in this big world!
“Remember there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end.”