Back Then

Last week, I took a trip into my family’s virtual future. Today, I’m going to go 10 years back into Ashley’s life – back to the time when she was 3 years old – for a glimpse into the past and an understanding of how incredible it is that she has become the vibrant, intelligent child she is today.

March - 1998

Ashley has been with me for one year now, and what a year it has been. She had spent her first two years with a foster mother, a woman who met her while she was in the hospital. Ashley was born 14 weeks prematurely. She spent 4 months after her birth in the hospital, and Linda, the foster mom, visited her almost every day. When Ashley was well enough to leave the hospital, she joined Linda and the daycare children that Linda watched on weekdays at Linda’s townhouse in the suburbs of Washington, D.C.

I know very little about those two years, and that saddens me. I have a couple of pictures – one of Ashley on her first birthday, and one that appeared in the newspaper of Ashley screaming in Santa’s lap. Other than that, Linda shared with me the many illnesses that Ashley had endured, the brain surgeries, and the infrequent speech therapy that Ashley had. It’s easy for me to look back now and say I would have done things differently, such as more therapies, more early intervention services. But, those first two years are times I can’t change, but I am determined the change things now that Ashley is my daughter.

On the day Chip and I drove to Washington to pick Ashley up and bring her to our home, before taking her home, I immediately took her to a neurology appointment. I had researched what doctors she would need, and then got recommendations from other parents as to which doctors they believed would be best for Ashley. So in the first few days with her new family, Ashley visited the neurologist, the pediatrician, the dermatologist, and the gastroenterologist. Her medications were checked and adjusted as necessary, and our life as a family of three began.

The adjustments for everyone were many. Perhaps the most difficult one for me was figuring out how to cuddle and love this beautiful child who was so sensory defensive that she never wanted to be held. That was closely followed by my worries over Ashley’s lack of appetite and eating skills. She was still on a bottle and was taking only milk.

Our days together turned into months, and an illness then changed everything. Ashley has significant issues with her ears. She had surgery in June on her ears, just three months after coming home to our family. That surgery further exasperated her eating problems, and she finally just refused to eat anything at all. After days of dealing with an NG tube (a tube placed through Ashley’s nose and into her stomach) to make sure she got the nutrition she needed, and after her weight dropped to an alarming 18 pounds, I made the decision to have a G-tube (tube surgically inserted directly into her stomach) placed for her feedings.

Although the G-tube scared me greatly, it really was the best thing to do. By receiving the proper nutrition through the tube, Ashley began to grow and her health improved. She and I could now work on her feeding issues with the help of our local Children’s Hospital and not worry as much. And the tube helped get the proper amounts of her medications in – something that is very important because of her seizures.

1998 was ending on a high note, or so I thought at the time. Ashley was conquering her sensory defensiveness enough to the point that she would let me hold her – she was growing – she was more alert and open to the many therapists that came to our home – and her wonderfully quirky personality was beginning to shine. But then the unimaginable happened. Ashley had a seizure that came very close to claiming her life.

Chip and I spent Christmas Eve 1998 sleeping in the waiting room outside the hospital’s intensive care ward. And, we would spend the next three months with Ashley in the hospital, praying every day that she would survive and come home with us.