Empowering Caregivers-Spotlight-Marie Kennedy

I want to thank Empowering Caregivers for asking me to be featured in the Spotlight. This site has helped me in so many ways, and I have shared the link with family and friends. I am honored to be able to relate my story to other caregivers.

I grew up in a loving family where I learned patience and caregiving as a child. My dad, one of 8 children, cared for his father until his death, and then continued to caregive to his mother.

I loved having my GrandPa and GrandMa living with us. However, I found my GrandPa dead one morning when I was very young, and the memories are still vivid. Years later I was left alone for one week to care for my 3 sisters and GrandMa (we called her "Honey"). GrandMa was a diabetic and I had to give her shots and regulate her other medication. I often bathed and cared for her and never thought twice about it. My brother had previously been in charge, but he had left for college, and my parents had taken a much-needed vacation. GrandMa died while they were gone. Another loved one to die in their sleep. My only regret was having fed her Hamburger Helper for dinner, but at least she died with a new gown on! I was 19 at the time and knew then that I was proud to have been one of the last to hug her and make sure she was okay before she went to bed the previous night.

Several of Dad's siblings lived with us off and on. We were never rich with money but our house was always full of love. It felt like such a safe place to be. My Mom is patient and kind and never once complained about the additions to our family and the sharing of our home. She loved her in-laws like her own. My parents grew up in a double next to each other, and they are alone now for the first time in almost 40 years after caring for 2 of my dad's older brothers who died the past few years.

While I was used to being a caregiver after they became ill, I was not prepared for what was to come for me personally. I had never been in trouble until I turned 18, and at that point something changed inside of me. I was wild by anyone's standards and began setting a bad example for my 3 sisters. My parents lived through many sleepless nights, and after having to make a few phone calls from jail I decided with their support to enter a stress center and quit drinking. I turned 39 this October and have been sober for 14 years. I quit on my 25th birthday. I know what it is like to need help and accept it. I value family support, and my whole family is closer as a result of my experience.

Having been educated in Catholic grade school and high school, I loved the closeness and the feeling that someone was watching over me. My parents made sure I attended Mass, and I developed a deep relationship with God. Because of the charity work through my school and often with my family I found out how fortunate we were. I grew up thinking almost everyone had two parents that loved them, but I came to realize that was not the case. We didn't talk about God often in our home and didn't pray at certain times. Sometimes I think it was continual. I feel a closeness to God, my Higher Power, that allows me to be happy and free. I often think of a quote from Christopher Robin to Winnie the Pooh in the video Pooh's Grand Adventures as something God says back to me. "Always remember, you are stronger than you seem, braver than you believe and smarter than you think."

After years of breaking off engagements for one reason or the other, I married Chooch (Jim), my best friend, for all of the right reasons. I was 31 at the time. We both wanted a child right away and I was pregnant within a few months following our wedding.

We attended classes together and did all the things we knew to do to keep both me and the baby healthy. I quit my job when we married, and I knew I wanted to be a stay-at-home Mom.

I experienced some complications on Jim's birthday. I went into labor almost two months early. I was in the hospital for nine days of off-and-on labor, and finally my water broke and they had to let me have my baby! We didn't know the sex of the baby until that magical moment when the doctor said "It's a boy!" We named him James Blair Kennedy III. Such a big name for such a tiny baby. He weighed in at 4 lbs, 10 oz. He had to be on oxygen for a brief time and was in an incubator for nine days. We brought him home on our first wedding anniversary. He was on a heart apnea monitor for 6 months. There were some days I didn't leave the house even to check the mail. I just held him. Our bond was so strong.

Because he was our first child and premature at that, I wasn't that concerned with his motor skills, and the doctor told us there was just a delay in their development. However, when visiting my parents when Jimmy was 16 months old but still not sitting up on his own (and just starting to "army crawl" low to the ground) I saw tears in my dad's eyes. My parents asked us to take Jimmy to another doctor as he wasn't moving right. I know that was really hard for them and I thank them still for the courage to tell us. Jimmy was diagnosed with Cerebral Palsy a few weeks later. My first question was "will it kill him?" The answer was no, and then we asked if he would walk. The answer to that was "I think so, although it may not be normally, but his mind is fine."

I had kept a journal of our everyday actions and what he ate and how he moved, as he was so tiny. I was afraid I would do something wrong! I learned in the stress center years ago to journal my thoughts and sort them out. My husband was strong and sure, and even said "I will carry him the rest of my life if I need to." There were many days and nights we didn't talk as much as we used to, but we said "I love you" a lot.

Jimmy began therapy right away and I read everything I could find to learn more about CP and what we could do to help Jimmy. The diagnosis affected the whole family. Jimmy is the first in this very large family with a disability. He has been loved and accepted from the moment he was born and nothing changed after the diagnosis, other than offers of help. I think I was in shock for a few weeks. I couldn't drive. I felt like I was inside a video game when I tried. My husband stayed home as much as he could to help me and watch over us, for he knew I was afraid.

After a few weeks of not crying (I was afraid if I ever did I wouldn't stop!) I went downstairs early one morning and laid on the floor and wept, kicking my feet and trying to get out the feelings that I had been holding in. Chooch heard me and came downstairs, holding me tight as I whispered "my heart is breaking, my heart is breaking." I physically felt as if it were.

I decided that day to grow up and be as strong as I knew I had to be.

Jimmy has achieved many goals. He is the youngest child in his clinic to ever start walking on crutches. He always thanked the therapist and smiled, even when we knew he was worn out.

Taking Jimmy to Church with me was difficult after he started wearing braces. He was so handsome and happy, but when I would go down to Communion everyone would first look at his face and smile but then see his braces and lower their heads. I say "everyone" because it seemed that way..100's of people in rows. I tried to understand. I had joined a new parish closer to my new home after I married. I was well known and comfortable at the old one but knew very few at the new one. The first time I took Jimmy in his braces and this happened with the pitiful looks, I returned to my seat and thought I might pass out.

I began to sweat and feel dizzy. I couldn't kneel and hold Jimmy so I sat back and tried to calm down. We left Mass early and I didn't go back for weeks. I called one of the priests and asked for an appointment because I didn't want to be afraid to go to Church or sit there upset for an hour. We talked about many things and he suggested I attend a retreat with 40 other women to meet others and maybe attend Church with some of them. I was reluctant to leave Jimmy for two days but I was just a few miles away and needed to do this for me.

The retreat began with everyone stepping up to a microphone to introduce themselves. Before I could speak I began crying, and a new "friend" whom I had just met introduced me. She explained to the group that I was there as I had a son with CP, but I didn't want to leave it at that. I made myself say the words:

"I came because I am grateful to have Jimmy in my life and I am too nervous to go to Church and I want to be able to kneel at the alter and thank God for this blessing and let go of the guilt and fear I carry with me."

Before the retreat was over, I realized that I had not accomplished what I wanted to. I felt strong enough to..so I went to the chapel and knelt down. I was alone at the alter for a moment to pray, and then cried uncontrollably. I felt someone on either side hold me up until I said in my mind (or maybe out loud - I'm not sure) all the things I wanted to say. I have never felt more powerful than as I do as a Mother. The retreat helped me organize my thoughts and made me very aware that I need God in my life. I don't believe you have to go to Church to pray or that my way is better or worse than any other. I do believe there is a power that surrounds me and gives me what I need when I need it. I just have to believe and let love in. I never pray that Jimmy doesn't have CP. I do pray that he accepts his abilites and that we can show him how.

My journal turned into a book about our son. My Perfect Son has Cerebral Palsy. I wanted to share the joy we have and the love we lean on. It is emotional rather than medical, with many happy pictures. Jimmy just turned six and is almost running. He attends regular school and rides a little bus. He attends conferences and visits schools with me to talk about my book in connection with a program called "Everybody Counts."

It is important for me to show that Jimmy has CP - it doesn't have him.

With all of the emails and letters I have received, I feel honored to be Jimmy's mother and be able to share our story. I am crying as I write this, and I still cry sometimes when I need to, but the smile in my heart is constant and many of the tears are happy tears. I try not to think "why me?" Instead, I think "why not me?" Would I rather it be my brother, sister or a friend? No one will love and care for Jimmy as I do. Our son verifies my belief in magic and the power of love every single day.

Please take a moment to visit my web site at http://www.mariekennedy.com