Hey there friends and family! So, get ready…this is going to be a long one. I have a lot to share. If you are wondering what prompted me to get back on Facebook and/or why I left Facebook in the first place, the answer is simply - Paul. Yes, my son Paul who is now 4, but at the time was only a baby. Let me explain why… In 2011, I dropped everything that was a distraction (Facebook included- or especially) because my energy and attention became the most precious things I had to offer my family. We were already juggling the demands of caring for two little boys born back to back, when we were thrown a bit of a curve ball. At 10 months old, Paul was diagnosed with left-sided hemiplegic cerebral palsy. That’s a mouthful, isn’t it?! Didn’t really see that one coming as there was no warning of any complication during my pregnancy or after he was born. Rather, there was a distinct, definite day that everything changed. I had taken him to his 9 month check up when I shared with his doctor that we noticed he was army crawling mostly with one arm and was still unable to sit-up unsupported. Her reaction was not what I expected. I tend to be an overly concerned mom and thought this was just going to be one of those appointments where she reassuringly told me that babies develop at their own pace and not to worry…That didn’t happen and I felt completely unprepared. Instead, an urgent appointment with a pediatric physical therapist was made for an assessment. We didn’t even know what we were facing yet, still the days that followed were filled with a lifetime’s worth of anguish, worry, guilt and fear. I wish I could say that wasn’t the case and that my faith kept me from floundering but it didnt. The “what if’s” and “what did I do’s stole every ounce of energy I had, as my mind played out a thousand different scenarios. Along with the self-blame of his developmental delay, I had the converse concern that the cause was something completely out of my control. My mom’s brother had passed away much too young from Duchennes muscular dystrophy. This disease is degenerative, aggressive and genetically a real possibility for our boys. So when the physical therapy assessment, MRI and neurologist evaluation were completed and the diagnosis of cerebral palsy was given…we were actually very thankful. We were confused, but thankful nonetheless. Our prayers had been answered. It was not MD and we were incredibly grateful that we would not have to watch our child battle a degenerative disease. So what happened exactly? Is there a reason he was diagnosed with CP? Well, yes and no. Paul appeared to have had a stroke in-utero. Yep…you read that right. He had a stroke while he was still in the womb. While the doctors can not say with 100% certainty what happened, it appears he suffered a stroke around the first trimester because of the way the stroke appears on his MRI. It makes sense because I had a experienced a threatened miscarriage during my 13th week of pregnancy. While it was a very scary experience, we were not warned of any lasting consequences to the baby, as my pregnancy continued to progress without complication. However, what we didn’t know was that Paul had suffered a stroke involving the front parietal lobe of his right hemisphere. As a result, his entire left side is weakened, the muscles are spastic, he has general low tone to his body and sensory issues. Sounds complicated, however his CP is very mild. The brain’s ability to make new pathways, neuroplasticity, coupled with early intervention have made a huge positive impact on his abilities. Most kiddos on the mild side aren’t even diagnosed until 2 years of age. Part of my motivation for sharing all of this, is the hope that it will spread awareness and that more kids will be diagnosed sooner 2011 was a year of surrender, revelation and determination. Looking back, I can see how my faith was tested and how the more I tried to figure things out the more fearful I became. It was only when I let go and realized that this-all of this- was exactly God’s plan that I was able to find peace. Paul hadn’t changed one bit. He was just being revealed to us. His CP isn’t something “wrong.” God doesn’t make mistakes. Paul’s CP is a part of him and makes him who HE is…who He intended him to be. In fact, it is because of his left-sided weakness that his right side is incredibly strong. It is his unique brain that gives him a memory that rivals an elephant. He is tenacious, creative and passionate about what he loves. Gratitude replaced the fear and worry. Our faith was strengthened, our energy was refocused and we entered into a world of therapy, dropping all distractions at the door. Now that you know the reason I left Facebook, I’d like to tell you why Paul is the reason I returned. Fast forward to the spring of 2014…My husband, Zack, and I watched a documentary, “Beyond Limits.” It is an inspirational story of a man named Bonner Paddock who decides to climb Mt. Kilimanjaoro in Africa, the tallest free-standing mountain in the world. What makes his story so inspiring is that he too was born with cerebral palsy. The manifestations of CP vary greatly and while Bonner doesn’t have Hemiplegic CP his struggles are still similar to those Paul faces…weakness, balance, equilibrium, lack of range- just to name a few. Bonner not only climbed Mt. Kilimanjaoro but raised money for charity along the way. Then, in 2012 he became the first athlete with cerebral palsy to complete an Iron Man. Today he runs OMF, the One Man Foundation, that raises funds to raise awareness and support for kids with disabilities to live “without limits.” His story moved us deeply and Zack didn’t miss a beat in proclaiming that he wanted to do something, like that, to show Paul that anything is possible. My husband has always been a go-getter, adventure seeker and cyclist of all styles of bikes. He grew up riding dirt bikes and competed in motocross. He is an avid cyclist, races mountain bikes and dabbles in Ragnar…has endured grueling Fire Academies even…BUT…he has never been a marathon runner or swimmer. So, when he not only proclaimed he was going to do an Ironman but booked it for 9 months out..this was going to be no small feat. He is doing it and he is doing it for a wonderful cause. I have to tell you, I am so proud of Zack for taking this initiative- all on his own- to commit to this and train without complaint day after day. By competing in the Ironman 70.3 he is raising funds for the Challenged Athletes Foundation (CAF). Insurance typically provides the basic needs for those with disabilities and CAF bridges the gap between accessible living and living an active life. You may have seen some of their FB posts that I have shared and now you know the very long back story as to why. This is a cause close to our hearts, as we would stop at nothing to help Paul fulfill his athletic dreams. Thank you so much for taking the time to read this very long post! I hope I didn’t crash Facebook! Lol! My life is an open book…didn’t plan it that way… but God did and that’s good enough for me. It’s a privilege to be able to share and if my words can provide comfort, raise awareness or simply expand someone’s thinking- then it is worth the vulnerability of being so open. Much Love, Tracy That is why, for Christs sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” ~ 2 Corinthians 12:10
Posted on: Sat, 10 Jan 2015 20:32:55 +0000
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