One day. We all have that single day which sticks out to us as life changing. Perhaps the day you became a Christian, the day you got married, the day your kid(s) were born or the day someone special passed away. June 27, 2010, was that day for me. On this day, my life changed forever. It was a Sunday night before worship, and I was holding my 8-month-old daughter, waiting for my husband to get home. I was sure that Afton Kate just had a seizure. The truth is I had a feeling in my gut for about a week that something was not right. As I sat there holding her, I tried to talk myself out of thinking it was a seizure. I tried to think of anything that it could have been besides this.
When Justin walked through the door, I began to tell him what I thought had just happened. It did not take long into this conversation for her to have a second one. We called our good friend who is an ER doctor and asked what we needed to do. At this point the seizures were very short and a few hours in between so his advice was to watch her through the night and take her straight to our pediatrician first thing in the morning. She slept all night with no seizures, but the next morning she started a cycle that lasted several days. She would seize for about 2 minutes, sleep for a few hours, woke up and seized again. I lost count of how many grand mal seizures she had . Within the week she started on seizure medication, had multiple doctor visits, and the only information I got was that we would have to "wait and see."
Wait and see we did…. for six years. In this journey God led us to many different doctors and programs to help her catch up in her development. At 10 months old, we started her in the state Early Intervention program. There my classmate and friend, Jennifer Hendrix, began working with Afton and still works with her today. In addition to this program, we put her in a private Early Intervention preschool called the Bell Center in Birmingham, AL. This program did wonders for our daughter. Our family and church family were supportive in this decision. We made over 300 trips to Birmingham, raised almost $15,000 for the Bell Center, and even ran a marathon and half marathon. When she graduated from the Bell Center in 2013, she still had benchmarks to achieve, namely walking. We started hippotherapy in Jasper, AL, with the EASI program. Within six months, she was walking. Prayers answered! This was the first major hurdle she overcame.
The early intervention program provided other benefits that helped Afton including occupational therapy, physical therapy, and speech pathology. We did anything the doctors recommended to find out what was going on with our daughter and how to help her develop. We went to ophthalmologists and had eye muscle surgery. We went to ear specialists, neurologists, and geneticists. Our neurologist Dr. Martina Bebin got her in the Sparks Clinic at UAB but this, like so many other things, gave us no answers. We were grasping at straws to try and get answers. The whole time it felt like I was drowning in grief.
During all of this time I did everything I was supposed to do. I smiled and was outwardly positive. I was supportive of my daughter, but on the inside I was a disaster. I went into full mourning. I felt guilty about mourning my living, breathing child, so I tried to hide it, but that only made things worse. Every time someone would offer words of encouragement, I would smile and say thank you, but inside I would just scream. I heard a myriad of encouraging words that were not actually so encouraging. Some of which included "God only gives special kids to special people..." or "God made her special for a reason..." and my personal favorite " Modern medicine is amazing, I’m sure they will be able to fix her." OHHHH! I just wanted to scream at the top of my lungs, "She is not broken and my God did not do this to her!"
As heartfelt as it was, it only made me feel worse. I would try to tell myself that I should be content and count it all joy, but I was angry. I was angry at God. I was angry at myself. I was even at one point angry at Afton Kate. I couldn’t pray or worship. I needed help and was pushing away the only One who could help me. I continued on this way until the birth of my second child. Afton Kate was a little less than 18 months old when Blake was born. I am sure everyone thought we were crazy for having a second child so close in age given our current situation. (A few well meaning people did express this to us as if it was any of their business) Honestly, so did we at first. He was a God send. At Blake’s six week appointment our pediatrician said, "Blake will be better for Afton than any therapy you might put her in." He was right! Our son is the most patient, caring little boy. I could tell you a list of things a mile long he does for Afton. He and Afton have a special bond. Even though she is non-verbal, they can communicate together on a level no one else can. He accepts Afton for who she is. He is her best friend. In addition, he helped Justin and I take our mind off all the unknowns we were facing. He helped me to know that I was not a failure as a mother. He was developmentally ahead so as time progressed, Afton became competitive and started trying to keep up with him. Slowly I began to move into acceptance.
After 6 long years of waiting and testing we were able to find out that Afton Kate’s condition was genetic and that the genetic abnormality was new to her. Justin and I did not carry it nor could it be passed on. At 8 years old she was put on the Autism spectrum. On that fateful day back in 2010 all I wanted was answers. I kept thinking if we could only get a diagnosis, we could help her so much more. We started therapies as a placeholder, so to speak. We would do this or that to keep the momentum going until we found out what we were dealing with. Then, we could start a real program. Turns out those "place holders", were the real program. In those 6 years Afton learned to walk, started communicating, and now that we have a diagnosis, we are just doing more of the same. We take one day at a time, celebrate the small stuff, and try not to sweat the big stuff.
Nine years later I like to think that I have finally reached full acceptance. I finally have been able to appreciate the journey that I have come through and look forward to the rest of my journey. Sure, there are things that I will not experience with my daughter and when what should be a milestone passes it hurts. I try not to dwell on it. I shed a few tears of self pity and roll on. Afton doesn’t know she missed something. She is just as happy and life goes on just like before. I have a happy healthy and beautiful young lady that unconditionally loves mommy, daddy, and her two brothers. Her smile is contagious, and her laughter brightens the gloomiest of days. She loves to sing, be silly, and is always by my side. I will never lack for companionship as long as she lives, and when the our journey comes to a close we’ll be singing together again with the angels in Heaven. There will be no more therapies, missed milestones, and discouraging days. We will live in the direct, perfect presence of our Father who will meet our needs in perfection (Rev. 21:3-4).
I said that June 27, 2010, changed my life forever, but what I should have said is that it changed what I thought my life should be. Truth is, no one’s life turns out like they think it should. We all have things happen that we don’t expect. We all have that one day, but if we dwell on what might have been, we’ll never enjoy what is happening now right before us.
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