Yes, it is!

Tuesday, March 1, 2011

Cerebral Palsy Awareness Month

March is Cerebral Palsy Awareness month.  Cerebral Palsy awareness is an issue that is close to my heart.  My beautiful daughter struggles with this disorder.  In honor of Cerebral Palsy awareness, I hope to share some inspiring stories throughout this month.
I know I have talked often about my daughter and her diagnosis of CP.  I'm not going to apologize for continuing to talk about my daughter.  As I said above, this is something that is close to my heart, something that I am very passionate about.  Throughout my life, I've met many people with disabilities, including CP and I have had high regard for many of those people for the things that they have accomplished in their lives despite whatever limitations they may have.
One of those people who comes to mind is somebody who I met when I transferred to a different high school in North Carolina.  His name was Buddy Martin.  Buddy was affected throughout his entire body.  As a result, he had an profoundly awkward gait.  But he didn't let his disability prevent him from walking, however difficult it might have been.  Buddy wasn't about to let anything hold him back.  He excelled in academics and graduated at the top of the class.  Buddy went on to become a doctor and eventually he set up his own practice in Arizona. 
After I graduated high school, I did lose touch for a time with Buddy.  But I never forgot him because he just made that much of an impression on me.  He was highly intelligent, he was fun, he was outgoing, he was popular and had lots of friends.  He was also one of the few very kind people toward me.  Buddy was a rare gem.  He inspired so many people, probably more than he will ever know.  I know that he continued to touch and inspire so many people as a doctor.  Buddy was one of the first people I thought of when I got my daughter's diagnosis of CP.  Jackie was just an infant when she was diagnosed and at the time, I had no clue what her future would be like.  Would she run?  Would she even walk?  I would occasionally remember Buddy in high school and what he overcame and I had to remind myself that everything would be okay.  Several years ago, I shared Jackie's story with Buddy, knowing that he would be a huge source of encouragement.  He told me to call him anytime.  I was very appreciative of that.  Unfortunately, I received word on Valentine's Day that Buddy passed away in his sleep.  I was shocked.  Buddy just seemed... invincible. Despite his "disability".  He was just one of those people.  I am still saddened by his sudden passing.  He was still relatively young.  Buddy, thank you for being such an inspiration to so many people.  I'm sure you will be sorely missed by your beloved patients and friends as indicated by your Facebook page.
Back to my daughter, I am so proud of what she has accomplished.  Jackie is now in Kindergarten and excelling in school. She has many friends at school. I remember the first week of school did not start so grand for her.  Twice within the first full week of school, Jackie was bullied for being "too slow" in line.  The first time, Jackie told me that somebody hit her in the line going to lunch because she was moving too slow.  I was a little bothered by it, but I was hoping that it was an isolated incident and it wouldn't happen again.  Then a couple of days later, Jackie told me that somebody hit her on the playground because she was too slow on the ladder to the slide.  Okay, now I had to do something.  I was not about to sit back and allow my child to be a bully victim like I was as a kid.  But, I did not want to appear to be an over-reacting parent, either.  So, I took a day to think about what to do until I decided to just email the teacher.  I am so thankful that I took action because the teacher and the school social worker acted right away.  Jackie apparently had never told her teacher what had happened until the teacher and social worker talked to her.  Soon after, the social worker went into Jackie's classroom and talked to the kids about differences.  The visual aid that the social worker used had a positive effect on the students.  When Jackie's teacher relayed to me how the social worker told her story, it brought tears to my eyes.  I was so touched. Since then, Jackie has made good friends who look after her. 
I have to say that I am grateful that Jackie has been affected mildly by CP.  It could have been worse and I am reminded of that every time I have to take Jackie to the Children's Hospital for any appointment.  I give a lot of credit to an early diagnosis, Early Intervention, and all of the awesome therapists involved in Jackie's care.  I am also grateful for the wonderful doctors that Jackie sees on a regular basis.  Jackie has endured speech, occupational, and physical therapies since she was 9-months old.  She has also gone through numerous tests, including MRIs, ABR, x-rays, vision and hearing evaluations.  She has already had 2 foot surgeries with a third one that was planned to take place a couple of months ago. That was pushed back because Jackie fractured her clavicle for the third time.  In six years, Jackie has gone through so much but she is such a trooper.  And it has all been worth it to see how Jackie has progressed to the point that many people have no clue that Jackie has CP.  They may notice that Jackie limps but assume that she just hurt her foot or leg.  And I've had just a couple of people wonder why she is lazy with her left hand.  Those people felt terrible when I explained the "laziness." 
Some people have asked if there was something that caused Jackie's CP.  The truth is, we are not exactly certain why Jackie has CP.  She was just six weeks old but very fragile when she was dropped to the floor by a visiting relative.  Jackie had already been diagnosed with failure-to-thrive and weighed just 7 1/2 pounds at 6 weeks of age.  She had a rough start in life beginning with severe jaundice as a newborn.  After Jackie was dropped, Tim and I rushed Jackie to the base ER where she was diagnosed with a brain bleed.  She was then transported to St. Louis Children's Hospital where they confirmed the diagnosis.  It was a very frightening ordeal.  After spending the night at the hospital and being observed for the onset of seizures, we were allowed to take Jackie home.  At the follow-up appointment, instead of being seen by the actual physician, Jackie was seen by a physician's assistant who measured Jackie's head and asked me a couple of questions.  Then she said Jackie was okay.  As they say, hindsight is 20/20.  If I had known better, I would have asked for a follow-up x-ray because at 4 months of age, we noticed that Jackie was not moving her left arm.  Then by the following month, her regular pediatrician noticed a decreased movement in the left leg.  An MRI was ordered which revealed an area of brain damage where the original brain bleed was.  She has a PVL (peri-ventricular leukomalacia).  She was immediately referred to a neurologist who confirmed the diagnosis.  And he believed it was the result of being dropped.  But the pediatrician at that time suggested that it could have been a result of a stroke in utero.  Yes, unborn babies do suffer strokes.  I really don't know what to believe.  But the damage is in the same area where the bleed was.  I don't believe we will really ever know the true cause of Jackie's CP.  But it doesn't matter now.  I have been able to forgive (after some time) the person who dropped my daughter.  And although I thought my dreams for my daughter were thrown out the window after her diagnosis, that is no longer the case.  I have had to adjust some of my dreams but Jackie is achieving so much already.  She may never be a competitive gymnast but she enjoys it anyway.  She may never be a world class pianist or violinist, but she will be starting piano lessons next week and soon we will add violin.  Her left hand may give her trouble at times but I certainly hope she continues to be excited about music lessons.  Jackie has loved music from the very beginning of her life.  I'm excited for Jackie that she is finally going to start music lessons.  And I'm just so proud of my beautiful little girl for all that she has gone through and for what she has accomplished.  Now if only I didn't struggle with her extreme strong will and her big-time drama.  She is such a drama queen.  But I love her anyway.

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