“Like most young women, I wanted a family. I wanted a little girl to put bows in her hair and paint her nails. I wanted a little boy to take to T-ball, for Santa and Easter bunny pictures, and family vacations. Two was the perfect number. Little did I know my life would take twists, turns, and ups and downs.
When I first discovered I was pregnant, we were so excited. Apart from horrible morning sickness, the pregnancy went by smoothly. All check-ups were perfect and we had no indicators that anything was wrong. But when our daughter Kaylee was born, we started to notice a few things.
She didn’t sleep well. She didn’t like being held a lot. She preferred spending hours in her swing. She also had a severe speech delay. Doctors told me I was just a worried first-time mom. As she grew, we missed weddings, funerals, and parties because we couldn’t take her in public without her screaming and throwing herself on the ground.
When Kaylee was two, I discovered I was pregnant again. I remember sitting in the bathroom crying. I thought to myself, ‘No, not again! I can’t handle another one like this!’ Their dad had basically the same response. After calming down, I reassured myself that I couldn’t possibly have two kids that demanded this much attention and energy. I didn’t know the odds then.
Everything went perfect again with this pregnancy. I felt great and looked great. When little Dylan was born, he nursed like a champ. I felt like my prayers were answered. I had a happy, healthy little boy. He loved to be held and play. I felt hope that a normal life was still possible.
All the while, Kaylee’s condition was getting worse. At three years old, and a lot of begging doctors for help, she was finally sent to speech therapy. That’s when we first heard the word: autism.
She was put on her first medicine to help control her outbursts. Kaylee is easily frustrated and doesn’t like being touched. She can be fine one minute and explode the next. Once we had her diagnosis, we began to do research. Soon after, we started seeing early signs in our son as well.
He walked on his toes, had a speech delay, and everything went into his mouth. Dylan also has sensory issues. He wears ear protectors and doesn’t like certain textures. We must cut tags out of clothes and change sheets and blankets until we find what works. He has no sense of danger and climbs, jumps, runs into and on everything.
In January 2011, we received Dylan’s formal diagnosis of autism. Then came an ADHD diagnosis. They also found fluid on his brain, which luckily resolved itself. In April 2011, Kaylee was diagnosed with Anxiety Disorder. Just one day later, our town flooded, and we lost everything. I was in nursing school. I remember sitting in the school board office and it finally hit me. I broke down in tears. My life, my dreams were gone. I had two disabled children and now no home.
The next two years were very dark for me. During that time, I did more and more research, looked for specialists, and read book after book. On the inside, I was dead. I would tell people, ‘I’m in survivor mode.’ I wouldn’t let myself feel. I couldn’t be weak; I had to keep going. I kept working towards finding the best doctors, therapists, and schools. When I did allow myself to feel, I felt jaded, robbed of a life I was supposed to have.
I was angry at God, angry at all the nice people that said, ‘I will pray for you.’ I felt so alone. People asked numerous questions like if it ran in my family, when will they grow out of it, and if I would try for a ‘normal’ child. It made me feel like a failure as a mother and woman. It didn’t stop there.
More diagnoses came over time. Kaylee had to have corrective back surgery for severe scoliosis. She has two rods and twenty-four screws. She came through like a champ. After testing Kaylee at 11, we found out her condition was linked to a genetic deletion 2p13.2. She is the only noted person to have this specific condition, so we have no reference and no guide for what to expect in the future. But it did help explain why meds never worked for her.
Dylan continued to be sweet and loving, but had no words. He is also a wanderer. He has run off more than once, almost getting hit by cars. He even got out in the middle of the night when it was raining once, and we didn’t know. Our neighbors found him playing in the apartment complex driveway in the puddles at 3 a.m. when they let they dogs out. I had to key lock all of the doors in the house and make sure all of the windows were child proof. Sometimes it feels like living in a prison.
I hit rock bottom and was just angry at everything. I don’t remember the day, but I remember getting to a point where I thought, ‘This is going to kill me. I need to accept it. I need to learn and help others.’
I met my first autism family when Kaylee was in 1st grade. That is when my life began to change. Kaylee made her first real friend and they are about to start junior high together. Her mom has become one of several autism and special needs moms that are like family to me. We found a special needs baseball team and cheer team. We even found a program that offers summer camp experiences for children with special needs, free of charge.
I learned we were not alone. I took classes on IEP’s and advocating for my children’s needs. I completed nursing school and now work with special needs children one on one. I try and help those families by sharing resources I have gathered so that no family has to feel alone like I did. The guilt and resentment is real and it is a normal part of the grieving process. In the end, you just have to make the choice to go on for yourself and your kids.
Kaylee is almost 12 now and, in most aspects, can be like every other preteen. She loves shopping, cooking, and playing with her friends. We are teaching her to self-advocate and to track her appointments and manage her meds. It is hard on her because she knows she is different, but it doesn’t stop her from living.
She loves her brother and helps him and stands up for him. She like to play ‘speech therapist’ with him and works with him. Kaylee makes AB Honor Roll, plays baseball, does Girl Scouts, and Cheer. She is my princess warrior and she truly inspires me every single day.
Dylan is 9 now. He’s happy and on the go all the time. He loves to snuggle and play and will never have to worry about the things of the world. He learns new words all the time and is learning life skills. He likes to be outdoors, play video games, and watch movies. He loves to curl up in blankets and show me videos. He loves Thomas the Train, Paw Patrol, and The Avengers. He can always bring a smile to my heart with his laugh and love.
I use our journey now to help teach and show people you can make it. There is a life after diagnosis; it won’t be easy and there will be tears and anger. However, if you spend your life focusing on everything you lost you will miss what you’ve gained.
I gained a relationship with my children that I wouldn’t trade for the world. We had to learn to communicate without words at first. Now, I can watch them and figure out what is wrong. I learned a good hug is the greatest love. I appreciate every milestone we reach. When Dylan was 5 and I picked him up, I seriously fell to the floor in tears when he said ‘I love you’ for the first time. For most moms this is a warming moment. For me, it was life changing.
I watch Kaylee now go into stores and the doctor’s office and handle transactions on her own or with little help. This is huge since doctors told us she would never function. My kids have leaped hurdles and climbed mountains, passing expectations of professionals.
Never let people tell you that your child can’t do something. I pushed forward and kept trying. Is it easy? No. Will you cry and get frustrated? Yes. Will your kids beg not to go to therapy sometimes to stay home and play? Yes. However, every new word or new skill is one to celebrate.
As parents, we have to dig our heels in and take a stand for them, fight for them. We have to be their cheerleader at every step. I know I would not be the person, nurse, mother, or woman I am today without the journey we have lived.”
This story was submitted to Love What Matters by Amanda Sutton of Monroe, Louisiana. You can follow her journey on Facebook here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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‘My wife must regret spending her life with me. If she met someone different, she’d have perfectly healthy children,’ I told myself. ‘He is one of 34 people known to have this.’ My heart sank. ‘What? In the country?’ ‘No, in the world.’
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