Monday, December 13, 2010
As I reflect on this past year, I realize this has been one of the hardest years of my life. Once again, I had to accept... yet another, hard blow.
I have been through alot in my lifetime. I lost my brother, my only sibling, to a malignant brain tumor when he was only 32. At first I could not accept the fact that the type of cancer he had was terminal. I called Dr's all over the world, I researched the cancer he had till I could no longer see the computer screen for days, my eyes were too tired. I watched my healthy looking brother who did not complain once, become sicker and sicker by the day. I still thought I could do something to help cure him. I looked into alternative options, homeopathic medicine, herbal treatments, diets, the list goes on. He had brain surgery to get as much of the tumor out as possible. The Dr's at Mass General did a great job and my brother Quin lived three more years. The last six months of his life I watch him slowly become completely paralyzed. He lost his voice, then his movement, then he became stiff and unable to do anything but blink to communicate. He still had his sense of humor and found ways to tell me he loved me. I brought in my boyfriend at the time, who my brother was not too fond of and he sang a song (he could not sing), my brother looked at me and laughed his last laugh, like what is this guy doing, he is not right for you. He was right. My brother was my best friend and I miss him dearly.
I also lost my mother to lung cancer. She was diagnosed with stage 4 lung cancer a few weeks before I became engaged to be married. I had no idea, she waited a couple weeks to tell me so we could enjoy our engagement. I started to research again, knowing that this also was a tough cancer, but maybe I could find something to help. Acceptance was tough, I was devastated once again. Mom did not complain once during the treatments. She loved my husband and was thrilled about the wedding. She was too ill to help plan with the wedding, so I did all the planning with my husband. It turned out to be a beautiful wedding at an old estate, my mother, father and all had a wonderful time. She looked beautiful, we lost her 3 months later. I just wish she lived long enough to see her first grandchild. She is deeply missed by all.
Later that year I became pregnant. I had the best pregnancy and of course we were thrilled to become parents! I had the worse labor. The baby was 10.8 lbs and I had hard labor for 24 hours, there was no way I was able to push a ten pound baby out. The baby's heart became weak a couple times and the nurses were worried, I finally had an emergency c-section and Christopher Jr. was born. Perfect baby, I was told. At six months with no milestones emerging, he was the diagnosed with CP.
Acceptance was hard once again, some said there is no way he has CP, he will progress, just you wait. I knew better and again I did my research everyday. This time I found something promising, ABR (Advanced Biomechanical Rehabilitation). I read all about this therapy and it just made since to me! ABR is a hands-on therapy that addresses the smooth muscles/internal myofacia of the body. A therapy that brings predictable recovery of the musculoskeletal structure and motor function in children and young adults with brain injuries. I signed up right away, two weeks later we were in Montreal for training. We practiced this therapy everyday for 5 years and it is by far the best therapy we have done for our son. I saw his body transform right in front of my eyes.
Well this year was the big blow. Christopher started biting his bottom lip non stop and I was beside myself, my son was biting his bottom lip off. I talked to Children's Hospital and they gave us drugs to help him stop but it just got worse. Our PT saw a show called mysterious diagnosis, and sure enough they had a show called "The boy who bite himself". The boy had Lesch Nyhan, a syndrome-disease that is caused by the lack of the enzyme that controls uric acid in the body. It causes CP like symptoms, with self injurious behavior. I did some research the night she called and diagnosed my son that night with Lesch Nyhan. He fit the profile to a T. I called for testing the next day and he was diagnosed by Children's Hospital with Lesch Nyhan in early January 2010. Lesch Nyhan is usually inherited and the mother is usually the carrier. I was tested and I was not the carrier, it was a fluke in genetics. This diagnosis happened two weeks before our pending lawsuit was to be done with. We had to cancel the suit.
For some, acceptance was so hard with this diagnosis. Our SON has one of the rarest conditions in the world with a horrendous outcome. I was so sick for one week, and then I accepted this time. What I have been through in the past has helped me become a very strong willed person. My husband and many family members did not accept this diagnosis. Some still think he does not have Lesch Nyhan. It took all year for my husband and family to come to terms. The Dr's are hopeful with all the new medical breakthroughs and are hoping gene replacement therapy may be helpful down the road. Christopher-Cj is healthy and stable at the time.
I am just happy that this year is over and we can begin the new year with love, hope and good health. Once you learn to accept you can move on, otherwise you can not. Like my brother said when he found out about his cancer and all he went through, "a piece of cake".