Selfish to selfless.
The first time I saw my tiny daughter wrapped in a pink blanket, it felt as if I had become a whole new person. I was 25 years old, and had spent most of my life concerned with me–how I could entertain myself, what I wanted and needed, what were my dreams. But one look at the tiny soft bundle refocused my life’s purpose. Suddenly, it was about US. More importantly, it was about how I could best provide and care for HER.
Parenting was one of those life experiences that took me from selfish to selfless in a single moment. You see, during my pregnancy, although I knew intellectually there was a baby on the way, I could not identify with the concept of being a mother. When she was born, birth complications meant that I didn’t see her until she was more than 2 days old, and so even the first two days of her life, I knew there was no baby inside me, but I still hadn’t connected on a heart level with having a child. My first look at the child who had the tiny pug nose and lips I saw in my father’s pictures slammed that connection into my life in an instant.
Those birth complications I mentioned above? They were all part of a bigger picture, all which together meant that my daughter was born with an open spine (spina bifida) and tethered cord syndrome. The first 12 years of her life saw us at the hospital some 33 times, and in that time she had had two major spine surgeries, major reconstructive kidney/bladder surgery and had faced the very real possibility of amputation of lower extremities. From having these difficult life experiences I can state one thing emphatically: once you have been asked to sign papers to allow the amputation of any part of your child, you learn what are your priorities. Beyond that, everything else is small stuff.
I learned during her medical ordeal that there are many things you can do that you have no idea HOW to do; your entire life becomes a 24 hour self-help experiment. Being a parent meant I figured out things for which I had no background. For example, how do you keep a 2 year old on her back long enough to perform two hours of physical therapy daily? You sing, you make up rhymes, make the exercises a game, put M&M’s between her toes, tie helium balloons to her ankles, and learn to tell stories and entertain her the entire two hours. And then there are the days when you both simply cry the whole time but you do it because it’s what’s required for your child to walk. The priority for me was to make my daughter as normal as possible. Everything else-men, jobs, money, vacation, entertainment, anything for myself-came way down the line when setting my priorities.
You do what you have to do.
As far as I am concerned, whatever one has to do to take care of their child/ren, it’s what one has to do. I worked 3 and 4 jobs at a time to have the financial resources to take care of my daughter. I made too much money for government assistance, but not enough to provide for her basic needs on the salary from my primary employment. And so I worked… and worked… and worked. I cut corners where I could, made extra money everywhere I could find, and kept pushing for the very best for my child.
After her first spine surgery, the law firm where I worked fired me because my having a handicapped child made the small firm’s health insurance rates increase. So they fired me, calling it a “personality conflict.” It was a financial decision they made in 1982 after I had worked there 4 years and it meant I was suddenly unemployed with no health insurance. Hard knock, right? This was one of those life experiences that required pure grit to endure. Then in 1990 when she was facing another spine surgery, that employer told me that I could be off work but they wouldn’t pay me. It didn’t matter that I was a single mother who received NO child support from a dead-beat dad; it didn’t matter that I could lose my home if I were off work with no pay. According to employer (I won’t mention names, but it was a major automotive manufacturer in Smyrna, Tennessee), those things were my problem.
And so, I had another life changing moment: an angel (the company nurse) came by my desk and whispered three little words: “Stress medical leave.” Those three little words made me realize exactly what I had to do. On Thursday before she was scheduled to have spine surgery on Monday, I crawled into the floor and screamed and cried hysterically until I was taken off work for stress. On short-term disability (medical leave for stress), I was paid ¾ of my salary for 3 months. And I found a way to make money at home: working for a company performing voice work (phone sex). All of these were things I would have never thought I would do. But it is my belief that parenting requires that you do what you have to do to provide for your children. And doing so-while extremely difficult and stressful-makes one a very strong, resilient person who has no time for pettiness. Sometimes you feel you personify the term “self help” because you HAVE no help, you’re doing everything your self!
Research big decisions, and then make them with your BRAIN, not with your heart.
If anyone had told me I would learn medical terms, do research on medical issues, and act as the front-line medical decision maker for a spine-damaged child, I would have told them they were nuts. But what I learned is that as a parent, you simply learn everything you must in order to provide the very best care for your child. For example, when she was 18 months old, I was faced with two choices: allow the hospital to use a drug that had not been approved by the FDA for use on babies in the United States (but was used extensively in Canada and Great Britain) which had a low incident rate of allergic reactions, OR use the drug approved by the FDA for use on babies that had a higher incident rate of allergic reaction. Allergic reaction could mean death, disability, neurological damage, respiratory problems, etc., etc. Approved or not approved-it had to be my decision. I was 26 years old and way unprepared for such a critical choice, and there were a LOT of life changing moments that year. So I did the research, talked openly and frankly with her doctors, and made the choice (not approved). I asked a thousand questions, talked with numerous medical professionals, and made the decision my BRAIN told me to make. And I spent a lot of sleepless nights in prayer because there was nothing more I could do.
Choose your battles.
Every parent will encounter hundreds of decisions concerning his or her children. Over the years, you will butt heads with your children, sometimes from a very early age. Some of those head-butting issues must be absolutely done according to the parent’s demands, like wearing a seatbelt or bicycle helmet. Those issues are not negotiable. Then there are the battles that can be negotiated. For me, those usually had to do with things that don’t make a huge difference in the grand scheme of parenting.
My daughter was an individual from a very early age, and the Punky Brewster character often reminded me of some of Dana!’s choices. One battle we didn’t have-because I had learned to choose my battles-had to do with socks. Dana! wanted to wear mismatched, multi-colored socks with a bandana tied around one ankle. Now, she also had to wear special shoes (those white “baby” shoes, the leather ones with hard leather bottoms? That’s what she had to wear until she was about 10 years old. Those shoes meant that all the children made fun of her little turned-out feet, and she chose to wear loud, usually mismatched socks to draw attention away from the shoes.) So okay, I had to enforce wearing the shoes because they were prescribed to help her feet; but socks? Those had nothing to do with straightening her feet and whether the socks matched each other or the outfit she was wearing made absolutely no difference in her health, so I decided that wasn’t a battle we would have. If wearing mismatched socks made her happier, then so be it. I’d wear them too if needed for her happiness.
Parenting is hard; the older they get, the harder it is. If you’re very fortunate, you have someone to help you maintain a good balance of what is and isn’t fair (when you’re a single parent it is often impossible to discern). You run a constant balancing act to help them learn to think logically, act responsibly, be an individual, be a good citizen of the world, and enjoy life. You learn along the parenting path that what’s right with one child may not be right for another, and what’s correct in one situation is completely incorrect in another.
My two best tips for being a good parent are these: (1) keep your sense of humor, because it’ll get you through some really tough life experiences and (2) take care of your own mental health by having “me” time to regroup and recoup from the day-to-day stresses. As you’re instructed on every U.S. flight, “take care of your own needs first and then the needs of those traveling with you.” That’s good parenting advice because if you’re not physically and mentally healthy, you can’t make sure your children are. And that’s what parenting is all about.