Unexpected Diagnosis

My name is Angela and I am 25 years old. I was born three months early weighing in at 2.7 pounds. I don't remember a whole lot of my child hood except I walked on my toes since the beginning. Anytime anything was wrong with me whether it was trouble walking or slow ness in school, they told my mom it was because I was a preemie and left it at that. At age six my doctor decided to help me walk better they would lengthening my tendons in my legs. A few weeks of physical therapy and they called it good. I always had a feeling in my gut that something more was going on.

Well a few months ago I started to lose strength in my legs and arms. I also lost the ability to move my left foot. I decided to go back to the doctor and see if they could help me this time. First I went to a foot doctor who told me he couldnt help me and shoved me out the door without explaination. Next I went to a limb specialist...this is the day my world changed. He asked me and my Mom who came with me if I had ever been diagnosed with Cerebral Palsy. My Mom and I both said no it had never even be suggested to us before. I left there having more questions then answers and not wanting to believe what he said. I was then sent to a Neurologist, who I loved. He ran every test and did a bunch of MRI's. He sat me down and said I have a Muscle Form of Cerebral Palsy and that there is no cure. I thought my world had ended right there. That is a lot to process and I wasnt sure if I was really ready for a diagnosis. I went to another doctor and got the same answer. It was time to face reality and realize that I was now part of the Special Needs community whether I wanted to be or not.



All of this has happened in the last few months. Doctors can't give me many answers to why this happened. They think I have always had it and that Doctors did not want to scare my parents and they assumed we would be better of not knowing. I still have a hard time with this and hold a lot of anger as I believe I have a right to know.

It's kind of funny really because I have always worked with Special Needs kids and love every minute of it. I guess I just bonded with them and I really never understood why. After the diagnosis I realized all the little things I do that could have been CP related. Like the way I walk (a constant source of hurt feelings for me, kids made fun of me as a kid) the way I hold my hands (they are folded up and close to my body) I had a hard time learning in school.... There is more but I won't go into all of it.

I currently still have trouble walking and moving my feet. My hands and arms have lost muscle tone. But I have hope with work I can strengthen them again. I go to physical therapy twice a week and we are trying to figure out the right meds for me now.

I finally feel content with who I am and where I am headed. I love taking care of others and sometimes forget about myself. I love to be a little different than everyone else. I enjoy going to concerts and dancing with my friends. I spend a lot of time working but hope to change that this year and having a little more fun. You can read more about my story on my blog, Welcome to the Roller-Coaster Ride.

I Never Imagined

In 2005, I began scrapbooking furiously. I poured my heart into documenting our life (as we had come to know it), and journaling my feelings and thoughts. And from those labors, the "I Never Imagined" story was born. Here is how the album begins:

In the Spring of 2003, Brian and I learned that we were going to be the parents of twins. Not long after that, we were told that both babies were boys—twin boys! What a blessing! We knew our lives were in for a big change. But when the twins were born four months early (24 weeks gestation) on August 10, 2003, we never knew just how drastic the change would be. Shawn Phillip weighed 1 pound, 12 ounces and was 12 inches long. Clayton James weighed 1 pound, 8 ounces and was also 12 inches long. On that day our seemingly normal existence became the uncertain road that we now call our life. Both babies were extremely sick and every day presented new challenges—from brain bleeds to collapsed lungs, they battled it all. Clayton was the sickest of the two—his condition seemed to waver between near death and not so near death. Shawn had bleeding in his brain, but seemed to be more stable. It was such a surprise when the doctors called us to the hospital on August 27 to tell us that Shawn had contracted a staph infection and they didn’t expect him to make it. We spent that night holding him tight and praying desperately for healing. Despite everything, we had to say goodbye to Shawn on August 28 at 9:35 a.m. Clayton continued to battle for his own life. He had many surgeries and contracted several infections. We lived in fear of losing him too. But finally, after six and a half months in the NICU, Clayton came home to us. He weighed just over 8 pounds and was still very sick. We made many more trips to the hospital over the next six months. Although Clayton is now stable, our life is far from normal when compared to most families with a two year old. This is just a glimpse of the life that I NEVER IMAGINED.

My perspective has changed over the years, but my journaling in that album was truer than ever for me at that moment in time. For the rest of the album, just check out the original blogpost.