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?

5 thoughts on “

  1. Lungs of dust!?!?! So glad you figured it out and I very much hope you're feeling better already! And yeah, my biggest fear is dying too soon before my son will be okay (after him um, can't even say it). Glad you're back, I missed you!

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  2. You brought to my mind that you are a normal mom with normal feelings and fears. Tackling those fears along with a not so ordinary road is what I admired about your story. My daughter is 29 and for the first time I feel like she'll be ok in society. After reading this piece, i can let go and focus on the evolving events that could suggest that my nephew may have some learning setbacks.

    Such an enlightening read!

    Frances

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  3. Hi, Frances –
    Thanks so much for your supportive words…you're right, of course. The fears are normal…but we do not have “normal” children, do we? Knowing the world and all of the ways that the developmentally challenged are taken advantage of doesn't help one feel reassured, either. But I think, as do you, that our children are going to be all right. I've done all I can to prepare my daughter, and she has her brother to help her when we are gone. I'm glad your nephew has such a supportive, loving Auntie!
    All the best – Deborah

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  4. I too have the same fears, but it was those fears that saved my life. There was only one time in my life that I had suicidal thoughts because I felt my kids deserved someone better than me, and the idea of nobody caring for my autistic daughter the way I do, the fears of authoritative parenting of my in-laws, kept me alive. I still fear that I'm not good enough for my kids, but I fear more that others are even worse for her than I am. I know I just talked about myself, but it's my way of empathizing. I know where you are coming from except for the part about graduating college. I do worry that my girls will not be independent, but worse, my nephew on the spectrum… he's 15 lost in video game land. We can't get him in school because he has social phobias after years of being bullied in school. A girl can be dependent in this life and be ok. Boys, not so much. I'll be so relieved if he gets a real job in age, one that can afford him the luxuries he's grown used to. Your post is totally giving me hope on all of that. Thank you for writing it.

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  5. Michelle, you're the best mom your kids have. So am I. So are wel all…fears and warts and everything considered. As for your nephew…since he's a gamer, steer him toward jobs that involve gaming. Companies actually LOOK for these folks. Find him a tutor who can help him learn and if possible get him involved in something like the TAPESTRY program at UAA. (You can Google it, I'm sure). I'm glad your fears were instrumental in saving your life…mine made me a Fierce and Hyper-Activist Mom. Screw with MY daughter and…well…you don't really need two kneecaps, right? 😉 Hang in there…

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