|Written by Kesti Suggs ||
My Life with Chuckie
My memory of Chuckie in the home started when I was in the 3rd grade. I knew he was there when I was younger but it was then that I really remembered the impact he made in my life.
We lived in Pueblo, CO and Chuckie was institutionalized there. I remember we went to visit him and found him in a pool of urine. I remember saying to my father, “why would they do that to him? Why would they not change him.” I think my dad that thought that as well because he started staying with us more; eventually living with us. I remember walking with Chuckie and my dad around the block and people would stare and how awkward I felt thinking they were talking about us. I remember walking home from school with a couple of friends and this boy named Robert, he was in the 5th grade, started making fun of my brother and I just turned around and punched him in the stomach and ran home crying. I remember going home and asking my parents, “why do kids have to be so mean.” Chuckie didn’t ask for this condition, and neither did my parents. I remember my mom and dad fighting a lot, I really never knew why but as I got older, the fights were about my mother being tired and needing my dad around more to help.
You see, when my mom and dad married, like every woman, my mom wanted a family - the white picket fence and a husband to love. Which she had. My mom and dad had four kids - Kim, Chuckie, me (Kesti) and Celeste. Well, I don’t think my mom ever thought it would be this different. My dad was in the Air Force and decided to dedicate his life to Special Education and went back to school for his Masters and his Doctorate in Special Education and my mom did most of the work with us and Chuckie. Chuckie was severely profound (retarded), not physically, but mentally. He will never be normal, whatever normal is. His learning capacity would never be older than a 3 year old. He was a handful. He never slept, he was strong as an ox, he loved to climb trees, poles and he was always on the go. My mom never stopped. She was tired before 10:00 a.m. and needed a break. At night, my dad would take over and spend the rest of the night with Chuck. The doctors gave Chuckie medication to sleep. He would sleep maybe 4 to 5 hours a night. They both were exhausted.
We moved to Annandale, Virginia in the summer of 1976. After my father finished his degrees, he took a job for Department of Interior, in Washington, DC. He used to teach teachers how to teach mentally handicapped kids on Indian Reservations. He tried to have the kids mainstreamed in the school system, because people who don’t know or never had a child with special needs, were ignorant. He traveled a lot and for the most part when he was home, he spent the rest of his time with Chuckie. Yes, we felt we were put on the back burner a lot. My mom had to work as well. So Kim took over has our second mom. She had to be home for Chuckie’s bus at 2:30. He went to school as well. After school activities were hard to do. Instead of doing sports and playing with friends, we had to be home. There were times that we did do sports but it was without my parents. My sisters and I fought a lot about who would watch him and how unfair our lives were. Yes, he had disappeared couple of times and neighbors would call and ask if we were missing our brother. We would say, “Yes, do you know where he is?” They would say, “He is in our basement pounding on the poll. Can you please come get him?” Our neighbors liked us but were afraid of him. As we got older, he got more aggressive. He would pull hair, bite and pinch. That was his way of communicating with us. He could not talk and tell us, “No! leave me alone.” So he would get aggressive with us or anyone in his path. I understood that, but didn’t understand why my dad wouldn’t want to be with us. So I started jogging with my dad and spending a lot of time with Chuckie and my dad. I figured out that is how I could get my dad’s att ention - spend time with Chuckie. So I use to walk him, even though in my mind, the neighbors were saying, “that poor family.” I still did it because it made my dad proud of me. (This is what I thought). My mom, whom I love dearly, started getting depressed, sleeping a lot , feeling unlove d, which I cannot image being in her position, and finding herself drinking wine at night to relax. My parents still fought a lot. I remember crying with my sisters and wondering if they were going to divorce. My mom decided to go back to church. I don’t remember how old I was but my parents did try to do the typical family thing. We went to church or we tried. My parents were Catholic and went to the church with our family. Well, when we got there, basically we were instructed that Chuckie “could be seen but not heard.” Chuckie makes noises and carries toys around. Especially baby dolls with no heads or legs. That would depend on what he liked at the time. Anyway, we never went back to the Catholic Church. My mom started going to Truro Church and never looked back. My mom found Jesus Christ. Things weren’t perfect but my parents stayed together. My mom was still tired, they still fought, but we were a family. My dad still spent most of his time with Chuckie. Where you saw my father, you saw Chuckie. I would be there in the background trying to make my dad proud. (This is what I thought).
On December 14, 1988, my dad died. It was the worst day of my life. I was 21 and going to night school at the community college. That morning I woke up late and did not say good bye to my dad. If he was home from his business trips, I always made sure I said bye to him before he went to work. If I was home and it was 5:00, Chuckie and I would wait for him at the window. That was our thing. I think that was my connection with my father. Anyway, that night I did not go to school, I went to a Christmas party for work. I lied and told my parents I had school and could not go out with them. My sister was home from school and they went out to dinner. Later that night my dad left to go jogging … and life was never the same. My mom told me that he came home from jogging and went downstairs. He was not coherent; he did not answer my mom. He went to the chair and died. He had a heart attack and died in my mom’s arms. I will never forget that night. My mom had all my friends looking for me, they could not find me because I was at a party and not where I was supposed to be. If I was at school, I would have been able to say good-bye. The paramedics tried to bring him back but could not. They took him to the hospital and he never came home. My mom said he died in her arms that night. It was after mid-night when I got home and all the lights were on, I came up the stairs and saw my old sister Kim crying. She was 8 months pregnant. I thought something was wrong with her baby. I came up the stairs and asked what was wrong, and my mom came to me and said, “Your father is in the morgue.” I said, “What are you talking about?” “Your dad died.” I fell to the ground and started crying. I could not believe God would take my dad away from my brother. I asked mom, “What about Chuckie. Why? Why would God take him from Chuckie.” I was dumb founded. I did not know what to think. That year, I pulled away from my family. I would visit my brother in the beginning because I felt like no one else would see him. For awhile I did not see Chuckie. It hurt so much. Every time I saw Chuckie, I saw my dad.
I met Randy, my husband, a year after my dad died and I decided to start seeing my brother more. I started missing him, I wanted to take him for a walk or to the pool. He loved to swim. He lived 5 minutes from my mom and me, so I thought I will bring him home for the night. It was hard but I felt something inside of me saying, “You love him not because it made your dad proud, but he is your brother.” I guess all that time I was spending with him, trying to make my dad notice me, I was bonding with him and him with me. Now it was time to introduce Randy & Chuckie. Growing up, I would always have the guy who wanted to date me, meet Chuckie. I felt that if they could not accept him, I could not date them. That made my dad proud. (so I thought)
So, I invited Randy over and that is when I realized that Randy could be the one. He was wonderful with him. He had never been around mentally handicapped kids or adults before but he was a natural. Randy & I married July 2, 1994 and bought our first house. We were not Christians. I had no clue about the Bible. My mom went to church; I stayed back with my dad to help with Chuckie. That was my excuse. When we were planning our wedding, we were talking to a Pastor about verses and the verse about the promise that when you see a rainbow, God would not flood the earth again. I about flipped out. I had no idea about God. Randy knew it all. After having Kelee, I decided I wanted to know about God and I did not want my children not to know either. I kind of felt stupid that I didn’t know about the promise of the rainbow and the Bible. So, we started at tending church, in bet ween having another baby, Morgan. We were still caring for Chuckie and walking him. We would make him spaghetti dinner and watch Jane Fonda. He loved that. We would try to get him once a week but finding it very hard, because of our schedules. He did not know time, so missing a week went to once every other week. While we were living our lives, my mom was diagnosed with breast cancer in 1994. Five years after she was diagnosed, Randy & I sold our home and moved into her house, the house I grew up in. Where all my childhood memories came from, the house I thought I would never go back too. I realized I loved that house. We were getting the house ready to sale because my mom was diagnosed with stage 4 cancer. We knew - and she knew - she was going to die. We just didn’t know when. The cancer came back full fledge in her lungs and her body. I was pregnant with Mitchell, our third child, and she started losing the battle. She got to see my son born, and two months later she died. I still can’t tell you what is worse, losing your dad unexpected or losing your mom to a disease that gradually killed her. She had a lot of complications but lived 8 years after her diagnoses. I thought she died mentally when my dad died. She was not the same. She loved the Lord and prayed that we would all be saved. Before she died in 2001, we all had dedicated our lives to Christ. I was trying too and all the son-in-laws were following Christ as well. She was blessed. We were blessed to have her as our mom and our life.
We decided to keep the house and buy my sisters out. We loved the house and I did not want Chuckie not to be without his home. That was his home, even though he was at the training center (institution). We continued to bring him home and we started seeking God more. We ran a title company out of our home and we were very successful. We made a lot of money but felt disheartened. Something was missing; we wanted God’s approval of our life and felt that we were not doing His will. During that time, Chuckie started therapeutic riding and I started volunteering. I fell in love with this program. I found my new career. I loved horses and working with mentally handicapped adults. I started the certification process for the therapeutic riding program. So, as we were seeking, God lead us here to Colorado. I told Randy I would have to go back to be with Chuckie at least once a month or every other month. He was my responsibility. I loved him. I miss him when I can’t see him. He is a part of me. We prayed a lot for guidance. We felt God moving us here and we all agreed. We moved to Florissant, Colorado to own and operate a Christian Retreat Center called Christ Haven Lodge.
The first year here, I worked on getting the place clean and getting the lodge up and running. I still felt like I was supposed to finish my certification. I started looking for a therapeutic riding program here so I could finish my certification. No luck. I finally found a summer 10 week program. I fell in love with the kids. I also found out that this was hippo therapy, not therapeutic riding. So I had to start all over with the certification because I needed to finish it within the year I started. I found PPTRC down in Elbert, CO. It was an hour and fifteen minutes away. I told Randy,” I need to do this. I want to be a therapeutic riding instructor.” So I started volunteering and we were still seeking God’s will.
It was winter and I was driving back up the mountain and Randy called me and said, “Let’s give a free night to families with special needs. That night, Randy knew how excited I was about this; we started talking about what we wanted to do. We wanted the families with special needs to feel comfortable going on a mini vacation. I wanted the siblings to feel wanted and spend time with their parents and not worry about their special needs child or adult. So the decision was made and we began to plan for our first family weekend. We got volunteers to love on the special needs child or adult. During that first weekend, we pulled the mom’s together and had a mom time. I heard my mom all over again. The mom’s saying how tired they are, how they wish they could have more help and they always asked why? Why did this happen to me? Having these weekends make it worth it because these families know now they are not alone. My mom and dad felt they were alone. We didn’t vacation; we didn’t go out to eat. We didn’t meet other families like us. We felt like we were alone.
We concluded that we could provide a unique respite weekend to these families – giving them the opportunity to rest, play and receive support from others traveling a similar road. We decided we could make the lodge available on the weekends when we have the most vacancies which are our winter months and holidays. We were excited to be part of filling a need for so many families.
That was the start of Chuckie’s Place. I look back today, and know that God used my past to glorify him in the present. Without God in my life, I truly believe I would never have found my purpose and calling. I do love spending time with the special needs kids, but what I love the most is when I can put a smile on the face of the siblings. That is the support that changes a life!
Kesti Suggs, Owner/Manager of Chuckie's Place
Legal guardian to brother, Chuckie