Music Is For Everyone, Special Needs or Not!

As a music fan, I am often privileged with the ability to attend concerts of the bands I know and love. I have even been known to save enough money to follow a Bon Jovi tour to 17 shows across the United States from New York to Hawaii. As you can imagine, I had an amazing time at each and every show. What I never gave any thought to, was just how many people were unable to experience the joy of hearing live music while being arm in arm with countless others, having a beer, shouting, screaming, and singing along to each of the hits as well as the obscure songs from the vast catalog.

It was not until November of 2011 that my entire views on music and concerts changed. Having a child prematurely in the hospital is something that happens more often than you might think. While many of these babies grow up and live normal lives, countless others struggle. For some, the struggle lasts for a short period of time, and for others, it is life-long. How many children and adults will never get to experience live music?

When my son was born early, he needed to remain in the NICU for nine days. I had never been more scared than I was during that time. Seeing my child hooked up to machines, covered in tubing and wires, is not something I ever thought I would have to experience. Having a nurse tell me that my baby did not like his head being rubbed as he fell asleep was something I never expected to hear. Who was this woman to tell me what MY CHILD liked or disliked? As you can imagine, I felt enraged on top of my fear. 

While dealing with the many medical conditions that soon surfaced, I was fortunate enough to have been taken in by the Orange County Ronald McDonald House. It was there that I met a special woman that would soon become more like a sister. Watching her go through struggle after struggle with her beautiful son, I realized that GOD put her in my path for a reason. You see, her son is a few years older than mine, so she was able to give me advice and come to appointments with me to make sure my son was receiving the best attention and care. While most of my son's issues have been figured out and are being treated, her son James has kept the doctor's on their toes finding the next treatment plan to help him and his many medical needs. James is special and unlike many kids his age, does not get to experience life the way he deserves. 

As James gets older, he continues to grow and gain weight, thus making it challenging on his mom to get him from point A to point B. Though she has done more than most could ever do, she too is getting older and it is getting harder on her to transport him. I cannot imagine what it must feel like knowing that you are not as strong as you once were as you face many "what ifs" about the possible future for yourself and child. James' mom, Randa, is always the first one to offer advice and help in any way she can to alleviate the stress other parents often feel while navigating through the special needs world. She attends visits to the hospital to comfort parents during a loss, to provide a shoulder to cry on when needed, to fight when a parent does not know how, and to be a companion so they are not alone. 

Many will never know her daily struggle. Many will overlook her needs and the needs of her child as she is a strong woman who has never asked for anything in return from anyone. It was when I saw an article on her Facebook page that I knew I needed to help more. Her daughter, Sydney, has decided to help her mom raise money for a handicapped accessible van to transport her brother to and from appointments and activities. James, like many of us, enjoys country music, the thrill of being on a ride, laughter, swimming, and so on. Though Randa is strong and will stop at nothing to care for her son, the truth is, time is not on her side. She is getting older. Her son is getting bigger, and she needs help to make sure that he continues to experience all that life has to offer.

Please take a moment to join Sydney in her effort to help her family. She has set up a fundraiser for her mom and brother to enable them to have an easier life so that James will still be able to enjoy the things he loves the most and his mom will be able to help him without hurting herself while keeping him safe. Follow the link above to read more on James. He truly is a miracle and I am so blessed to be able to know and love him. James is my son's best friend and they have been through a whole lot together.

Take a step back and think about what it must be like for those who cannot live a life without limits. Imagine not being able to take your child on an adventure simply because the struggle to get them there was too much to bare. Maybe there is someone you know that is facing something similar. Let them know they are not alone. Be their hero today. ~Missy