So, at 40 years of age and with four children all in school, I was ready to start a new life before Heather was born. Here comes the big question. What if I would have said “no” when he asked me to have another child. I wouldn't have grandchildren almost as old as my youngest daughter, and I wouldn't be caring for a daughter young enough to be my granddaughter. It's likely I wouldn't have gotten divorced to protect her from her pedophile father. I wouldn't be living as a strong, busy, healthy advocate for people with disabilities. What would have been my life without Heather? I'm sure it would be very different, and it's hard to imagine what it would be like without the knowledge and focus of disability and the people we have met through Spina Bifida. I wonder.
I wonder if I caused the Spina Bifida. At one month after her conception my life was most stressful and chaotic, with the discovery of incest in the family occurring almost simultaneously with the sperm and egg uniting. The research has shown that the backbone of the embryo closes between the 28th and 30th days after conception. Shortly after that time in our lives, my daughter Wendy went into foster care, and I was fighting to understand the dynamics that caused the incest and keep the other members of the family fed and healthy, emotionally and physically. I felt *
*Now I know that folic acid can prevent up to 75% of neural tube disabilities, one of which is Spina Bifida. Folic acid is a B vitamin which is a stress vitamin. So, it seems very possible that my body didn't have enough folic acid for myself and my baby while I was pregnant. So, Heather has Spina Bifida. I don't feel guilty, that it was my fault or that my body let me down. In the chaos that I was living, it's understandable to me that there wasn't enough nutrients for both of us. So, I wonder....what if I had not been under that stress? If given the choice of whether to have a child born without Spina Bifida or one with, what would I do? What could I have done differently? Would I do anything differently if faced with the situation again?
And how do I begin to answer all these questions? The fact is that Heather has Spina Bifida. She and I both have to start with that fact. Being Heather's Mom is part of Who I Am now. We know it as a fact of our lives and we shake our heads at how hard it is sometimes to do the simplest things like when I have to make a special trip to her apartment to pick up a lunchable she's dropped. Most of the time, though, we look at the daily benefits of our relationship and our caring for one another. There's a satisfaction and joy that comes from knowing I'm there for her and she is a beautiful, vibrant young woman facing life courageously and filled with vitality and love.
She is a friend and teacher to me as I am to her. I've felt every human emotion in her presence. The major ones when I look back have not been overwhelming despair as some might expect. When seeing her struggle to do something for herself that others do easily, I wish I could erase the disability. I try to pave the way for her myself when I can. I've felt incredulity at the stupidity of those uneducated about disability—some people are just so dumb, or are they naïve? And then there has been the exasperation at her balking at doing something so simple as making a phone call. And the fury that boils within when I see when she is neglected. Sometimes, yes, I feel regret and many times disappointment that I cannot make it easier for her as I'd do if she was still at home. I've also felt the purest joy seeing her perform something I thought impossible for her, too. Like when she me told she was going to come to me, and then taking off wobbly walking to me when she was six years old. Like sharing laughter at the simplest vignettes of life—a squirrel who can't find its way up a tree, her dog Lucky running all over in excitement at seeing us, or a Chinese lunch together at Tea Leaf II sharing our lives not as Mother and Daughter, but as true friends.
Now that I've spent over twenty years of my life caring for Heather, watching her grow and struggle, wishing her over the next hurdle, whatever that might be.... overall, I'm proud to be Heather's Mom
The emotions of a parent of a disabled child are not all depressing. If anything, the highs are higher. Or maybe the lows are so draining and taxing on a parent that it doesn't take much to make a high. Little things are counted as blessings. Or maybe when we make a difference in a little thing, it matters more since the big things in the situation are out of our control. One learns to accept the disability and situation as it is and then work from there for the successes. Heather and I have had a lot of successes. A few of them: She graduated with her peer group, and proudly wheeled her chair from a special spot in the wings of the auditorium to hear words of praise for her courage and helpfulness from her teacher. She stayed in high school an extra year ...
Yes, there are the lows, but I wouldn't say they are lower than the emotions others experience. Maybe we get accustomed to the lows. Maybe we develop strengths to see past them. Or maybe, since you experience the lows so much of the time, the highs are more beautiful and precious in their intensity. I don't know. I just know that when I think of Heather, I smile.
Maybe a few examples are in order to explain what I mean. Heather has always been a perfectionist at heart. Everything has been slower for her—learning sign to express herself when she had no words yet, saying her first word at two years old, taking her first steps at three, learning to turn her walker around a corner, struggling with math or spelling or social skills, walking alone, making friends, making self-advocate phone calls. Whatever the next skill to master, she didn't do it according to the usual guidelines. All the coaching and prodding from her teachers or from me was useless, it seemed. Heather did it in her time, and then—when it appeared—she did it perfectly!
There have been many milestones. When she was six, Heather was playing with some toys at the beauty shop while I was getting my hair done. She called to me across the narrow room "Look, I'm going to walk to you." And she did! Wobbly, but without falling down, she came walking across to my side of the room. For two years after that, she walked, holding onto one piece of furniture to get her balance before launching in another direction.
Another characteristic of Heather is that she is resistant to change. She can be so flexible, when given time to think about it. But, ask her to do something she hasn't thought about and do it right now....you are asking for a wall of obstinate refusal. So, she has taught me patience and careful attention to explanation of changes through her strong sense of wanting things to remain the same.
There have been disappointments, too. Like when the school nurse called to let me know Heather was falling down as she got off the bus, and we would need to go back to using the crutches. Like when the kids at school tripped Heather as she walked from class to class, or when they teased her about being different. It was hard for me when she decided to use a wheelchair for mobility, after we had had the joy of celebrating her walking. The backward steps are always hard.
If given the choice once again—as I had when I learned of the pregnancy—of giving my time and effort to raise my daughter Heather or aborting her, I'd gladly do it over. Heather has brought me so much joy as well as hardship. Her spirit of wanting to do it her way, and finding whatever works for her has been a pleasure to watch. She is strong BECAUSE OF who she is and what she has endured, and so am I. It is the fight that makes us strong enough to fight. These days I'm a craft teacher, and my students marvel at the repetition and care I take to teach them. “You are so patient,” I hear over and over. I just smile. That's Heather's influence coming through.
So, one more question: If given the chance to do the pregnancy over, would I do it all over again? Yes, I would, I answer without reservation. Even if no change was possible, I'd live it over and enjoy the time with Heather. But if I had the chance to do the pregnancy over and change things, what would I do? Would I make sure I had plenty of folic acid? Would I do everything in my power to reduce the stress? Would I want to conceive a child born with Spina Bifida if it was possible to avoid it? If I could erase Spina Bifida from the list of disabilities and make it a memory, a mention in the medical books instead of a reality for thousands of people like Heather and myself.
You'd better believe it!
Please, if you are a woman of child-bearing age, make sure you get plenty of folic acid!
Spina Bifida Association
of Washington State
formerly, The Evergreen Spina Bifida Association
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