My greatest fear…biggest fear…fear that began to consume me when my daughter was born…the fear was that I would die before she grew up. Who, I asked myself, would love her like I do? Who would teach her the beautiful things in life? Who would hone her already razor-sharp wit and help her develop a sick sense of humor like mine? No one else could give her the things I could give her.
I was terrified…and this was way before we had an official diagnosis of autism. Waaaaaay before…like fourteen years before. Something in me, though…something in me knew that my daughter wasn’t like everyone else’s little girl. That she was Different. For one thing, my daughter was born 4 weeks premature. She was a big baby at nearly 8 pounds, so no one thought anything about her development. Until, that is, I met Jean Baker. Jean was a public health nurse in Anchorage and was doing a study for her Masters in nursing, and she thought that my premature daughter would be a good candidate. So for the first two years of my daughter’s life, Jean would come to our house for visits and write copious notes on my daughter’s development…or lack thereof. Eventually Jean recommended that my daughter participate in the Infant Learning Program, which was designed to help littles who had significant developmental delays, to develop gross motor skills. All of these things were good, but Not Enough.
So there I am, with a two year old who still doesn’t walk. I’m still terrified that I won’t live to be there when she reaches all of her milestones, because like the fierce lion mother that I am, I KNEW she would reach them…and that I wanted to be there when she did.
My daughter did not crawl until she was a year and a half old, and she did not walk until she was two. Her speech came along, a little slower than some, but it came along. It was the rocking and patting behaviors that people noticed – those, and her tendency to stand alone in a corner, even in a room full of other toddlers, because she didn’t know how to BE with them. These things shred a mother’s heart…even a lion mother’s heart. “What if I die?” I thought… “No one will understand her the way I do!”
Fast forward to when my daughter was fifteen years old and I finally admitted to myself that she was in need of more than I could provide, especially if she was ever to be a fully participating member of society. If left to her own devices, she is quite content to play video games and withdraw from society. This is not generally a good way to live…plus it’s rather lonely. Anyway. At 15 years of age, I took my daughter to a psychologist for a long, long series of tests. These took place over weeks – weeks– and at the end of the testing we had The Appointment. You know the one I mean, fellow Lion Mothers, fellow mothers of autistic children – The Appointment. I remember sitting there, externally numb and bleeding from every possible crevice inside my body, where no one could see. The emotional pain was dreadful. There was lava in my veins, not blood…and I thought, what if I die? Who will care for her? Who will be there to support her? I remember going to a friend’s house and sitting down. We were talking in a circle in the living room and I mentioned the testing. I remember that I began to weep with a fury that I didn’t know I was capable of…I cried so hard that blood began to pour from my nose like a spring flood. For fifteen years I had held that pain inside me, because no one really wanted to hear that Fear. The fear that I might die before my child was ready to face the world. The fear that someone would hurt her. The fear that she would be taken advantage of by someone who was her caregiver. You all know that fear, especially if you have special needs kids. It’s like living with your skin turned inside out. Every nerve ending is firing and the pain is unbearable.
Fast forward to today. My daughter is 27 now. She has been participating in a program at the University of Alaska Anchorage called TAPESTRY and will be graduating with a work readiness certificate in June. I have lived to see her grow up. I would like to see a LOT more of her life, but I am a little more relaxed now about the future. I have done my best – and so has my husband and a whole host of other wonderful people – to ensure that my daughter has the tools she needs to make a life for herself. For the present and probably the foreseeable future, my daughter lives with my husband and I. Some of my fears were unfounded…but real nonetheless. It helps to listen to the “What-Ifs,” but you can’t let them rule your life or your child’s life. The future is what Shakespeare calls “the undiscovered country”…and that’s okay.
This has been a Finish the Sentence Friday post. It’s been awhile since I’ve written…but for the past THREE months I have been very ill with a mysterious lung ailment. Turns out that I have a problem with lungsful of DUST. Who’da thunk?