I have two beautiful sons. Caden is 14. He's so tall (6'2"!), a hormonal teenager, but also super sweet. And Lucas is 10. He is loving, gentle, and a little mischievous. I have always wanted to be a mother, and I feel very blessed to be my boys' mom. This journey is not what I had envisioned, but through Caden and Lucas, I have learned a lot about myself and found strength I did not know I had.
My husband, Chad, and I have been married for 17 years. We met when I was in high school and after the wedding quickly settled down in our hometown of Bowie, Texas. I earned my associate's degree and got a job as a social worker for the state of Texas. Chad completed his training and became a plumber.
Two years later, we had Caden. He was very sickly when he was born, in and out of the hospital with stomach and lung issues and extreme weakness. He was slow to hit milestones-he wasn't walking or forming words by his first birthday. There were so many tests and treatments, the medical bills were mounting and the stress of not being able to pay them was unbearable.
When I was a little girl, my grandmother was an Avon representative. As an adult, I used the products, and I liked them and wanted to share them with others. I knew I needed a work-from-home side business that wouldn't take me away from my family, something I could schedule around therapies and doctor visits. I started selling Avon on the side to try and keep us above water.
Around that time, Caden was diagnosed with autism, and four years later, with a lot of therapy and doctor support, he was beginning to slowly progress. He finally began to walk by 4 years old and was able to start a program for special needs children at our local school. We knew we wanted another child. We prayed about it, and we were blessed with Lucas. From birth we knew that Lucas was not meeting his milestones either. He was very floppy, sickly, and possibly in worse shape than Caden. Heartbroken and devastated (to say the least), we focused on giving the boys the best life possible.
We are strong believers in God. I know He has a plan. But when Lucas turned a year old and got pneumonia and was on life support for 17 days, it shook my faith. The hardest thing in the world is to watch your baby fight for his life, struggling to breathe, and not be able to fix it. As mothers, we are supposed to make things better.
We are strong believers in God. I know He has a plan. But when Lucas turned a year and got pneumonia and was on life support for 17 days, it shook my faith.
We got Lucas better and home, but on his second birthday, he contracted pneumococcal pneumonia and was on life support for another 21 days. His lungs were so damaged. We began to pray. Our neurologist, Dr. Warren Marks, came to us and said, "This isn't autism. I think I know what it is, but the only way to be sure is to do a genetic test. It costs $20,000, and your insurance won't cover it unless it comes back positive."
And I said, "Well, I don't have $20,000 lying around."
God performed a miracle when Dr. Marks said, "Well, I do. I'm going to run this test and if it's MECP2 Duplication Syndrome, your insurance will pay for it. If not, I'll cover it." Chad and I could not believe what we were hearing. The doctor thought he had the answer we had searched for since Caden was born. Because their characteristics were so similar, we assumed that whatever Lucas had so did Caden. This amazing doctor showed kindness beyond measure to our family.
We tested Lucas, and it came back positive for MECP2 Duplication Syndrome. Then we tested Caden and he also tested positive. Everyone has the MECP2 gene in our bodies-Caden and Lucas have double the amount. It is debilitating and causes seizures, autoimmune deficiency, cognitive deficiency, and weakened muscles and gait, as well as a lot of autism features. There are about 10,000 boys in the world with this syndrome. (There's also a "sister" syndrome that affects girls called Rett Syndrome-country star Clint Black lost his niece to it.)
Everyone told me to institutionalize my children. With the amount of care they require, it's so difficult to keep your children at home. Both of my boys are nonverbal, with gait abnormalities, spasticity in leg muscles, incontinence, autoimmune deficiency, asthma, ADHD and many autism features. We must prepare all of their meals, dress them, bathe them and supervise them at all times. We know that they both have learning delays, but it is very hard to ascertain their IQs because of the difficulty in testing them. Caden has also begun having seizures and Lucas has swallowing difficulty.
Many boys with this syndrome have life expectancy of 14 years, so I had just received a death sentence for both of my children. How could I send them away when I wanted to spend every moment possible with them? It's a good thing I had a secret weapon. I was still working for the state of Texas as a social worker for the Aged and Disabled division, and I knew all about the resources to help pay for medical programs, therapy, and support groups. My boys require 24-hour supervision, and this requires part-time nursing care in our home. As you can imagine, a family on a middle-class income can't afford to have nurses come in, but I found programs to help with that. We were blessed to have good health insurance and the ability to find the resources we needed. But I was quickly using up all of my vacation time to take the boys to therapy and doctor appointments. The stress was becoming unbearable.
I had just received a death sentence for both of my children. How could I send them away when I wanted to spend every moment possible with them?
At this point I was working my Avon business on my lunch breaks and late into the night after the boys went to bed. My community of amazing people who are great customers supported my business and family. I also found a sisterhood of Avon representatives who work alongside me. I trained them to do what I was doing so they, too, could build residual income. My Avon business helped pay for copays to therapy and doctors' visits, pharmacy bills, gas money, and groceries. This income was becoming more helpful than I had ever imagined.
About 4 years ago, my mother, who is 60 and diabetic, had a heart attack. I'm the only of her children who lives nearby, and I needed to be there for her during her recovery from a quadruple bypass. Then Lucas woke up one morning and couldn't walk due to muscle issues. I had no vacation days left. Chad and I realized that I could make the same amount of money with my Avon business that I did from my full-time job, so I left my job with the state of Texas and took on more Avon, which allowed me to focus on the boys' and my mother's care.
Now, I work 25 to 30 hours a week. Technology has blessed me and my business. I can do a mentor call, training video, or write an email when I'm waiting for one of the boys' appointments or during therapy. I utilize social media and have grown an amazing team of fellow Avon representatives and customers that have become a support system to my family.
One year ago, we completed construction on a completely handicap accessible home-paid for by the money I made with Avon. The accessible bathroom has a roll-in shower, bars and a lowered sink to make bathing easier. We have ramps instead of steps and larger door frames to accommodate my sons' wheelchairs. Since we were able to build on Chad's family farm and the boys love the outdoors, this is their happy place.
I'll be honest, the balance is hard. Time management is the key to making the whole engine run. If one hiccup happens, I have to step back and refocus, make a new plan and move forward. I am a huge list maker and run things on a system to make sure that everything our family and business needs to accomplish happens.
But not everything is so strict. We are big entertainers and we have family and friends over for cookouts. We open up our home and have people over because it's easiest for the boys. But we also take them out to restaurants. The boys hoot and flap; it can be loud, disruptive, and embarrassing. But I only have my boys on this earth for a limited time, and if you have a problem with them, you can move to another booth. Every opportunity that we have to take a trip with them and make memories, we do. We are very active in our local church where the boys are loved and encouraged to worship freely. We are active in Special Olympics, the boys competing in track and basketball. I don't live life by a time clock. The amazing support system of family, friends, church family, and Avon family makes being a caregiver so much easier. We are blessed to be surrounded with a tribe of support!
I have also been deep into fundraising. Parents of children with MECP2 Duplication Syndrome have banded together to create 401project.com, a website that raises money for research on the condition. The Baylor College of Medicine lab at Texas Children's Hospital in Houston discovered MECP2 Duplication syndrome and is working on a medication that can bind the gene and possibly reverse it. It's working in mice, which is a long way away. Our group is actively fundraising for the cure, as we do not have any large foundations to support our cause. Every year, Avon offers a stuffed animal sale, where representatives donate their profits to charity. Mine is always 401 Project. I'm going to spend every minute I can with my boys and do everything I can to help them and the thousands of boys like them.
Learn more at 401project.com, which raises money to cure MECP2 Duplication Syndrome.
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