Story of My Son’s Cerebral Palsy—Join or Support Our 5K Walk on Oct. 22

“Your child’s brain isn’t like a carburetor! I can’t open the hood and adjust it!  The bleeding in his brain at birth has resolved, meaning: It stopped, it’s NOT FIXED!” Those were the words that rang in my head. This was the first time a neurologist had spoken to me about Cerebral Palsy.  It was the day that all my hopes and dreams for my new born son’s future instantly were altered.

When my son was diagnosed, I felt terrified for him and confused on what would happen next. My thoughts raced — thinking: How did this happen?  I had a perfectly normal pregnancy and had been seeing the doctor regularly.  Many parents go through similar emotional experiences as mine. Feelings of guilt, grief for the dreams they once held for their child’s future and confusion. There is so much to learn and instantly you begin to search for answers.

December 20th 1994, I was two weeks overdue with my third child. The doctor broke my water and left the hospital for 14 hours.  I was informed he had fallen asleep at another office.

During my labor, the baby turned face up instead of face down, his heart rate dropped drastically and he was in distress! The hospital nurses were scrambling around me and my family. NEO Natal I.C.U. (Intensive Care Unit) team was brought into my room.

Suddenly, I was prepped for a C-section, all before the doctor had even arrived. When my doctor arrived, he made the choice to deliver my child vaginally.  He used 2 different sets of forceps and injured my son.  At birth, my son weighed 10 lbs 9oz., had swallowed bile, had bleeding of the brain, was jaundice, his eye was injured, his neck and arm were pulled, his breathing was shallow and his agar scores were low.

They rushed my son into ICU where he stayed for many days—with intravenous antibiotics, tubes and lights all over his little body.  At 10 lbs 9 oz, he was so big next to the other babies there in that unit. Still to me so little, fragile and I was told on the edge of death.

Four days later, his health began to improve dramatically. I knew my child was a fighter from the very beginning. One of a parent’s most empty and hallow feelings is to go home without your child, after you gave birth. Many parents are faced with this reality.

That Christmas Eve we briefly left, to set up the Christmas tree for my other two children. They were at home patiently waiting for Santa to arrive. Upon returned to the Neo Natal step down unit and his crib was gone. Our lives were thrown into a panic!

Due to the infection and his brain injury, he suddenly took a turn for the worse. The nurses rushed through the tunnel that lies under Sharps Mary Birch and Children’s Hospital without notifying us. When we reached him that evening, I stood over his incubator. I began praying so hard for him to be able to open his eyes just to see how much I loved him. Praying for a Christmas miracle, as our family placed him on prayer lines across the United States.

Today some of the most precious smiles and most contagious laughter comes from the strongest, bravest little boy named Michael. He is my Christmas miracle and now lives with Cerebral Palsy.

Michael has a sparkle in his eyes when he hugs the dogs, hates to see others cry or be angry. The love he shares with sisters and family is apparent to everyone. Although he doesn’t speak, he is smart!

Some of his favorite’s things are The Wiggles TV show; the Cars movie and Elmo. The high school he attends has a “buddy program” that has made Michael more social. Michael adores his buddy “Taylor” – she is a wonderfully, caring young woman. She is an active senior at his school.

He has learned to communicate with her and the world around him through his looks, pointing, and laughter. Michael lights up the world with his presence.

Occupational and physical therapy has become part of his life since he was six month old. This is helping with the challenges he faces. I have watched this brave, determined child struggle to learn to sit up, stand and walk with assistance. He has had several surgeries on his hips and feet due to his muscle tone. August 15th 2011, he had metal rods placed all the way up his back and his pelvis fused.

Our family never left his side during his hospital stay. This surgery allowed him to grow 3inches over night. He has been through so much in his lifetime and faces more surgeries to come. Michael has to start therapy again to learn to use a different wheelchair because the one he has tips backwards now due to his weight. He will also learn to stand and move his body that is heavy and sore.

He is continuing to make new goals even though he has set backs. He fights to meet every challenge that’s placed in front of him. My dreams for him are to reach new heights no matter who tells him he can’t. I will never underestimate his abilities, even though they are different than my other children. I am proud to be Michael’s mother.

His story isn’t unique. The United Cerebral Palsy Foundation estimated that nearly 800,000 children and adults in the United States are living with one or more of the symptoms of cerebral palsy. According to the federal government’s Centers for Disease Control and Prevention, each year about 10,000 babies born in the United States will develop cerebral palsy.

Research shows that many children are born with Cerebral Palsy. Although, there are studies that say this may happen during fetal development, or just before, during, or after birth, that cause the particular types of brain damage that will result in congenital cerebral palsy.

There are many degrees of Cerebral Palsy — from barely noticeable symptoms to very extreme conditions. Cerebral means anything in the head and palsy is anything wrong with the muscles or joints in the body. People diagnosed with C.P. have had a brain injury and are not able to use some muscles in their body in a normal way.

Cerebral Palsy is not a disease or illness that can be passed on from generation to generation; nor is it contagious. Many people living with Cerebral Palsy do end up with a variety of problems, due to the brain injury. There are supportive treatments available including therapies, medications and surgeries that help with the communication and motor skills.

As parents, we become instant advocates for our children. We often have to search out supportive services for our child’s specific needs. This can become frustrating at times; parents and caregivers have to remember to give themselves a break. This is a lot to take in all at once. The important thing to know is that you are not alone in your journey.  

The parents with special needs children feel the crunch of the state budget. Services and equipment are some of the things that have been cut from the disabled. Several families and individuals turn to The United Cerebral Palsy Foundation, for assistance and guidance. Many people feel like they are in a maze and lost in a sea of information.

If you would like to find that information you could link up to United Cerebral Palsy @ http://www.ucp.org/.

October 22nd, 2011 there is a 5k “No Limits Walk” walk/run/roll at DeAnza Cove in Mission Bay, San Diego, to benefit United Cerebral Palsy. I have decided that Michael and I will be joining in the walk!

This is a noncompetitive walk that raises funds to support services such as adult day programs, adaptive aquatics, a mobile toy library, an assistive technology centre and other programs that support people with cerebral palsy and other disabilities with their families here in our community.  I would love to have others on my team or make a donation to participate! This is the link: www.ucpwalk2011.stayclassy.org.

When you find out your having a child you have hopes and dreams for their future. Those dreams may include college, sports, marriage and a family. Instantly all those hopes and dreams change when you’re told your child has cerebral Palsy. You dream they will walk, talk, play wheelchair sports and live happily. Families faced with the special needs of each unique child are brave as well. The strength and time they give is priceless.

My son and I son have been blessed to have such support, love and dedication from a wonderful family.