By her amazing Mommy, Connie Masullo
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.
Bella’s Journey as our President of Jangala’s Kindness & Caring Club
Miracle Walk, American Foundation for Suicide Prevention and Parkinson’s Unity Tour
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
Come join us as we make small but powerful changes in this big world!