It seems like I always mention this but frankly, this is a big part of me and my child, but it's always amazing how much Emma has overcome since she was shaken. Well, not just Emma but myself, too. As a single parent with a special needs child, I face a lot of challenges (maybe not much more than a couple with a special needs child) and just when I think I can't handle anymore... I look back and realize we have overcome so much. 2012 has been a year with a lot of ups and downs. It's been extremely hectic and full of challenges. I have pretty much neglected blogging for a long period of time. I have been overwhelmed. As Emma gets older, more and more evidence of the brain damage she has becomes more apparent. Thankfully, I am not naive and have always expected the worst and hoped for the best. As she gets older (she just turned 9), she's becoming more and more angry and frustrated. I have spent the most of the last year, trying to figure out how best to help her and to help her help herself. She needs coping skills and I took her to a psychiatrist and was essentially told that no help is available except counseling and medications. WTF? I was so defeated and angry. Emma's already on two different anti-seizure meds which are also used for psychiatric patients. She takes Carbatrol and Topamax. I am NOT adverse to medications BUT they can NOT be used alone. She still needs to learn coping skills and I am asking for help. I am obviously not doing something right. I want to make sure that all the Ts are crossed and Is are dotted BEFORE seeking out medications. I know that people with traumatic brain injuries end up needing anti-anxiety medications and such. I am ok with that but I don't want that to be a crutch. I want to make sure we aren't missing something and if medications are needed, ok. Thankfully, United Cerebral Palsy (where she attends an after school program) and her school (she's in a behavioral management classroom that is special education) are amazing and work so unbelievably hard. I feel very fortunate that everybody who takes care of my daughter ARE amazing. I try to thank them as much as possible.
Ok. Enough of the negative updates. How about something happy? I consistently under estimate her. I felt defeated that my daughter can't do ballet, gymnastics, softball, etc. I have been wrong. She attends an awesome exercise program for special needs children called KEEN and she LOVES her KEEN days! She has a blast! Phoenix is also home to a unique gym SPECIALLY for the disabled called the Virginia G. Piper Sports and Fitness Center for Persons with Disabilities (SPOFIT). One of the cool things was prior to the Olympics, the USA Paralympic Rugby team was practicing at SPOFIT for the paralympics. Awesome. Watch the documentary "Murderball" to learn more about these guys. It was quite amazing. I hope at some point, I can get Emma to compete in the Special Olympics! As I said above, Emma attends United Cerebral Palsy (UCP) for an after school and summer program, well, a few months ago, I was told about a special performance of The Nutcracker which is all inclusive. How could I say NO? Never. For nearly three months, she practiced and practiced. The best part? She made friends. Friendships that I hope will last a long time.
The Nutcracker performance was on December 22 and 23rd at the historic Orpheum theatre in downtown Phoenix with the Ballet Academy of Arizona. It was beautiful. I cried after the opening night once we got home. Boys and girls who are either mentally impaired, physically impaired, or both performed their hearts out. Children in wheelchairs were ballerinas, children who can't talk smiled and laughed. The excitement in the dressing rooms was palpable and they were all sooo excited to get on stage and show the world that THEY ARE CAPABLE AND AMAZING! They were bonafide ballerinas. The instructor, Caroline, is an amazing woman with grace and class and I say this with pure honesty, she is doing what is meant to do. She has a special way about her that inspires all children (heck and parents, too!) that they are all beautiful and amazing. Her students were WONDERFUL. Her "typical" students have such a level of tolerance, caring and sweetness that should be duplicated by all.
Since Emma's injury, I have become something of a hermit and have had a hard time reconnecting with other adults. I have put up such a barrier and stay at a distance. It's amazing, I used to be such a social butterfly and able to fit into any social situation but now? Not so much. Haha. I met some amazing parents and grandparents. I hope I get to see them again! I would love to continue to network with them! Emma made such sweet friends. I haven't smiled so much in a long time. This was an amazing journey to the Orpheum stage. For both of us. This opened up so much for us. It has helped awaken us. I want to strive for more. I hope that once my business is turning a good profit, I can sponsor more children to perform in more of Caroline's inclusive ballets.
'Tis a thing of beauty.
|I cheated and took a backstage picture. Flash wasn't on. :)|
|Ballet bun with LOTS of glitter!|
|The star and I backstage :)|
|Amanda, Emma's physical therapist and other therapists from the center came to see Emma and two other kiddos from the same therapy center!|
|Have to take pictures of the ballet slippers!|
|Downtown Phoenix posing|
|My baby all grown up after a weekend of performing!|
|In front of the poster! What an AWESOME memory!|