Born in 1971 to two parents who had no interest in raising children, I was adopted to my paternal grandparents at the age of 18 months. I was raised in a small town in Georgia. Our family wasn’t huge but we were close. My father’s brother and sister also did their part in parenting me. I was around my cousins on a daily basis. I was involved in Girl Scouts, Church, and the community. I had a great childhood. Till 1982. Around November that year, I began having odd symptoms and generally stayed sick. My grandparents took me to my pediatrician and we received a diagnosis of Mono. After, following through with treatment, I was still sick. My joints ached. My feet swelled. My nose bled. I kept fever blisters and mouth sores. I had no color and by Christmas that year I had more symptoms surfacing daily. Finally, we visited our family doctor one afternoon after school. I immediately left his office to be admitted to our local hospital.
Three days of testing using needles in my spine and back, we had a diagnosis. Childhood Cancer. Leukemia to be exact. I was rushed to Eggleston Hospital in Atlanta where we were once again admitted to the hospital. At this point, the only thing keeping me alive was other people blood they were pumping into me daily. Twenty four hours after being admitted we had a treatment plan and it would begin immediately that evening. Chemotherapy was the words they used. At this point, I am scared to death. All I remember thinking was “I don’t want to die!” However, somehow it had leaked that only 40 percent of kids that had what I had would survive. I was 13 and clearly understand the odds were stacked against me.
I spent an additional week receiving more tests, chemo, and blood transfusions. I had been thrust into this world where sick children were given whatever they wanted as long as it didn’t risk their recovery. I didn’t want whatever I wanted. I wanted to live. I wanted to go home and be healthy and do normal teenager things. There was so much grief and fear. It is an experience you can only begin to understand unless you’ve been through it.
Finally, we were back home facing three years of long road trips where I would be sick the entire way home. Three years of Chemotherapy. A regimen that came around every three weeks. Every six weeks I would be forced to endure a spinal tap and a bone marrow aspiration. Throw in numerous blood transfusions, loss of hair, the loss of freedom to go in public for fear of germs that might kill me, other kids making fun of me, a completely different world than any other teenage girl had. I immediately went into remission and after three years was released to only be monitored once every six months. Everything went as planned and after five years I was medically cured of leukemia.
The emotional effect of chemo on a person can not be put into words; especially a child. I went buck ass wild. Finally, I met someone and settled down some. We had two beautiful children and I had found my purpose in life. To be a MOTHER! I was a great wife and enjoyed every part of it. However, the marriage only lasted 4 years and suddenly I was a single mom with an alcohol problem. This made my children’s life change drastically. But, I continued to invest in them the same as I did when I had a husband.
Finally, I ended up in a treatment center at the age of 28. Shattered and torn, I grabbed hold of this new found freedom and took my recovery as serious as I did my Chemo. I had always believe that you are your own best advocate and I knew my body. I did self breast exams monthly even though I was years away from any risk; I can’t tell you why I did it. There was nothing that encouraged a 28 year old to even be concerned more or less pro active. There had been a lump that I kept going to and it had me worried. I opted to tell a friend and she felt it. Now, I am about 4 weeks clean and still in treatment. She spoke with the members of our center and suddenly I am being taken to the emergency room to have the lump checked out.
The ER doctor was aging. He had knowledge and experience and in his recommendation I would be scheduled a mammogram within a few weeks just in case. Honestly, at this point I was so scared I just wanted everyone to forget about the lump, but no one did and I was made to go to the mammogram test. Once there, I was informed I was too young and small for a mammogram, so they would be doing a sonogram instead. Remember, this is in 2000 and it is basically unheard of that women my age get breast cancer. The radiologist was concerned right from the beginning of the test, I could tell. About twenty minutes in she said she needed to go get the doctor. While she was out of the room, I collapsed. In that moment, I knew. This was all too familiar. The nice doctor came in and explained that they would be making me an appointment with a surgeon and that I NEEDED TO MAKE THIS APPOINTMENT.
A week later, I went in and was given three options. Watch it, needle aspiration or lumpectomy. Having being the sole responsible person for two young kids, I chose lumpectomy. This was scheduled three days later. A total of seven days later, one surgery, a lot of pain and even more worry; my worst fears were confirmed. I would be fighting to live again. The cancer had already spread to two lymph nodes which induced more testing, chemo and radiation on down the line. I went in for the mastectomy August 27, 2000. It was probably the worst individual experience I had had with fighting cancer. I had no idea what I was up against with recovery. Luckily, I lived in an environment where I had help with my kids while I recovered – which was a long six weeks. Followed the whole experience up with 6 months of chemotherapy and 6 weeks of radiation and five years of hormone replacement therapy.
During this year plus long battle, I relapsed and was suddenly thrust back into active addiction while enduring chemo and radiation. Luckily, DHS became involved in my life and added even more hoops I had to jump through during this year and a half. I played the roles and completed not only breast cancer treatment but a DHS plan from HELL. The day my DHS case closed I relapsed. This replaces was like nothing I had experienced. Complete isolation. Just me and my addiction and two kids. Six months later I admitted myself to a intensive long term rehab program where me and my kids lived for 3 months. Followed by a halfway house where I met my life partner.
Fast forward 3 months later, with a strong foundation in recovery me and my partner moved in together, along with 4 kids. We faced battles and victories. Gave it our all and 14 years later all our kids were grown and we were grandparents of Ayden, who was a constant in our home. At the age of 2, we decided (due to addiction of both his mom and our son (my birth child) it was time to seek custody. That battle lasted about 9 months and we were easily granted custody of him. Immediately things changed in our relationship. Things we overcame in the past were no longer as easily conquered. So, sadly to say we separated and I was suddenly the single parent of a 3 year old at 45. SCARY!!! And ROUGH!!!
I processed so much in this year along with surviving Hurricane Matthew and losing our home due to the aftermath flooding that year. I moved in with my daughter and her boyfriend mainly to avoid a complete mental breakdown. It was Thanksgiving and since we no longer had a home, we felt it was best to enjoy the holidays together while I took a break from everything. THIS WAS THE PIVOTAL MOMENT WHEN I STARTED ACKNOWLEDGING THE SIGNS. I used this time to analyze behaviors within my child that just didn’t make sense. Suddenly, the only thing that made sense was Autism… The behaviors, the break down to relationships, the isolation, the struggle.
Then began the whole process of reaching out and REJECTION from others who I thought believed in me. I questioned myself for a few months while continuing to research behaviors and treatment. Today, we don’t officially have a diagnosis but we are scheduled for testing and receiving behavior modification therapy 8 hours a week and on numerous waiting lists for ABA therapy once a complete diagnosis is made. I now have my life partner back who is 100% devoted to Ayden’s care and the battle. We have an army of people who agree, the next thing I will survive is AUTISM! We are blessed to be able to conquer this early and I am proud to say that we are completely pro-active and devoted to advocation for Ayden and are always available for anyone who just needs someone to listen and help. Not only will we SURVIVE AUTISM, AYDEN WILL MAKE A DIFFERENCE FOR OTHERS.