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Single parenting: the hardest thing I've ever done.

SINGLE PARENTING:

I'd always dreamed of having children; of being a wife and of being a "mom." It was something I knew I'd be good at. I'd been taught to believe in "happily-ever-after," yet I was willing to be flexible and accept a less than perfect marriage. But my girlhood fantasies had never included divorce and single parenting.

I thought I had it all when our third son was born. Our first boy had been born 15 weeks prematurely and had only lived for an hour. Mahlon, my second, was born 11 weeks early at 2 pounds, 11 ounces and survived. However, he was one of the unfortunate few who had residual cerebral palsy (brain injury resulting in movement disorder). He was bright and charming and very age-appropriate except for his motor skills. But he needed my total assistance. Michael, my third son, was a full term baby, thanks to the cerclage procedure where the cervix is sutured. He weighed a whopping 9 pounds, 11 ounces. I was elated. I thought everything was terrific. I had a husband, two great kids, and a house in the country. What more could I ask! But something was wrong with that picture and I didn't see it right away. Or maybe I realized it and chose to ignore the signs of a drifting relationship.

The communication and camaraderie between my husband and I that had seemed so profound during our college days in the 70s, when our causes and interests matched, had become marginal. After several years of marriage we discovered that our values were different our goals were different and our sense of responsibility didn't match. But neither of us was bold enough to broach the subject of divorce.

In my preoccupation with Mahlon's diagnosis of cerebral palsy and his subsequent therapy and with an at-risk pregnancy to get through, it didn't occur to me that my husband may have found someone else whose life was easier to blend with. When I found out, shortly after Michael was born, I was devastated.

"This isn't supposed to happen! This can't be happening to me! I don't even dare fall apart! I've got to take care of the kids! And he can just go off with her and have fun! Damn! It's not fair!" I got Mahlon dressed, then nursed the baby. I called my friend Cindy and told her what had happened. She listened and then said, "You shouldn't be alone tonight." She bundled up her two babies and came over. I was so grateful for that!

I was reluctant to tell my parents, who lived nearby, that my husband had left. I felt like I'd failed at everything I believed in. My husband wanted to be with someone else and not with me. It was intensely embarrassing. My pride was on the line, my dreams were shattered, and my heart was hung out to dry. I didn't want anyone to witness that! I didn't want to be on display. Then I realized that exposure was unavoidable: It had been two days and he hadn't come back. So I told my parents and his parents. I was thankful for their support.

Learning to receive help was the first obstacle I had to overcome as the raw truth of single parenting began to sink in. It had become obvious that my soon-to-be-ex husband wasn't interested in providing me any assistance except financially. But money couldn't buy some of the things I needed. Asking for help was uncomfortable for me. It wasn't in my nature to be dependent. I wanted to do it all alone to show him that I was okay without him in my life. I also expected myself to handle it. My inner voice was working overtime:

"If I give up my suffering, what do I have left? If I forgive and forget, then he wins and I lose and my misery is worth nothing! Would it be any easier without the kids, with just me to think about and plan for? But could I really trade all this responsibility for the loneliness I'd feel if they weren't here? Heck, I'm lonely anyway! Cindy asked me today, 'How many minutes are you up to now that you don't think about It (the divorce)?' I laughed and silently applauded her understanding. How long? A half hour, maybe... on a good day. How can I not think about it! I'm so angry at him for leaving me for her and for not realizing, or even caring how hard this is for me!"

And so I held onto my misery for a while. I turned down offers of baby sitting, preferring to lament my evenings away in pain, frustration, anger and self-pity. I didn't eat well and finally got so thin that I stopped nursing Michael at six months because I figured that my milk couldn't possibly have enough nutrients for him (I may have been wrong, but that's what I thought).

Then I felt guilty about it because I'd nursed Mahlon until he was twelve months old. I couldn't win. I fantasized about `get-even' relationships that would show my husband that I was having a jolly time too. But finally it dawned on me that he wasn't paying any attention anyway. I saw that what I did in my life had to be for me.

In order to do for myself, I needed help. My two babies were wearing me out. I was essentially single parenting twins -- they both needed to be fed and dressed and carried. I was getting exhausted physically and emotionally. I was concerned that if I only had more energy, more time and more assistance, I would be able to lessen the effects of cerebral palsy by doing more therapy. I reached my lowest low and from that perspective I decided that being a stressed-out, martyr-Mom was not the best I could give my kids. I took inventory of my needs. Mostly, I wanted time away from my small loved ones: time to think; time to dream; time to be with adults; time to sleep. So I started asking for baby sitting from willing friends and relatives. They didn't mind; my own pride had been the problem.

After I'd been asking for help for a while, I became very adept at passing around the `opportunity' to babysit my kids. And, a remarkable thing happened: I began to sense that I was giving as well as receiving a gift. I was allowing people to help me and it made them feel good. They were enriched by my children and my children by them. Everyone was a winner. They figured out unique ways to entertain Mahlon, to position him, to transport him, and to adapt games for him. And I benefitted from their discoveries.

The gifts I got were free time and two socially adaptable children. Now none of us felt deprived. My parents were my greatest allies. My mom would baby-sit at a moment's notice if I got called to substitute teach and my dad would come by after work to take Mahlon to baseball games or other outings. Both of them stepped in when I got sick. I also discovered there were county and state agencies that could provide respite care or could subsidize child care costs.

At first I would only use my free time for necessary things like appointments or grocery shopping, but after some enlightening counseling sessions, I gave myself permission to have some pleasure. I learned to be creative and more self-centered (i.e. self-nurturing) with my time. I would go to a movie, go shopping for clothes, go visit a friend, go for a bike ride, or just go home and take a nap! I took an aerobics class and a photography class (things I could have and should have been doing while I was married!). And through all this I discovered something interesting: Misery is optional!

I found that taking care of myself was just as important as taking care of my kids. Taking time to give to myself was crucial to my ability to survive the really difficult aspects of single parenting a child with special needs: making decisions alone and balancing attention with a non-disabled sibling.

Making decisions on my own -- an awesome responsibility. Even time hasn't diluted the intensity of the moment when I stood in the hospital, alone, and had to sign on the line that gave the surgeon permission to cut my son -- to permanently, irrevocably change his muscles. I'd done all the research I could on the procedure (adductor release). I'd gotten second opinions from surgeons, third opinions from therapists, and fourth opinions from other parents. And still I was unsure.

The surgery had to be postponed three times. First the doctor was ill, then Mahlon was ill, and then the hospital changed the schedule. I agonized.

"I'm so confused! What does this mean? Is it a message from the heavens that I'm supposed to rethink my decision? Is it a last ditch opportunity to call the whole thing off? What am I supposed to do?!"

As they wheeled Mahlon into the operating room he was crying, "Mom! Don't let them do this to me!" and I was praying "Oh God, let this be the right decision!" There was no shoulder to lean on. Sensing my anguish the doctor brightly assured me that everything would be all right. I despised his cockiness! I wasn't at all sure it would be all right and I knew he couldn't be either.

"What if he makes a mistake in surgery and I'm the one who let him do it?!"

They closed the door on my screaming child and I ran down the corridor and out the door and collapsed against the hospital wall and cried. I wept for all of us: for Mahlon, for me, and for three-year-old Michael who was waiting and worrying at home. I wept for our fear, for our confusion, and for our pain.

Some pains never go away. You accept the situation, you live with the consequences, but the pain leaves a scar. The agony of Mahlon's recuperation -- six weeks in an A-frame cast with wracking spasms as his muscles healed -- took a toll on each of us. Michael tried heroically to bring a smile to Mahlon's face to relieve the pain (his own and his brother's). For me it was emotionally exhausting to watch Mahlon suffer and physically exhausting to care for him and move him around. And the grim reality was that reinforcements were not on the way. Even loving family and friends couldn't fix things. My ex-husband had disappeared into his new life and I resented that I had to deal with everything alone.

The surgery did offer Mahlon some improvements -- his legs don't scissor anymore. But as with any surgery for cerebral palsy, you gain a little and lose a little each time.

I decided that something about my life had to change. I took a risk and tried something new. I rented a house with another single mother and her physically challenged son. It was advantageous for both of us: we could afford a better house this way and we could share household responsibilities. But best of all we could talk to each other.

In those isolated moments at home in the evenings and mornings there would be another adult to converse with. We talked together, we cried together, and, most healing of all, we laughed together. We laughed at ourselves, at our dogged devotion to therapy, at our hapless adventures with dating, and at our precocious children who sabotaged even our best efforts at behavior modification. There were trying moments as with any "family," but we could at least give each other a break now and then, at exactly the moment it was needed, without having to call for someone to baby sit.

In the midst of all the turmoil, Michael quietly grew and changed. I had to find ways and time to nurture his growing needs for physical activity and personal enrichment. I marvelled as he reached motor milestones that Mahlon had never achieved. I rejoiced in his accomplishments and, at the same time, wistfully wished that Mahlon could do it too. I gave Michael as much of my self as I had left after all the clinics, therapy sessions and meetings that were required for Mahlon. I grieved over his loss of what I felt was a fair share of attention, but did my best to compensate. I worked part time instead of full time so I could take him to the park or on walks or to the store whole situation more easily than I. His perspective was so different from mine: what seemed a grim reality to me, was his only reality.

He went along to therapy sessions and appointments and found ways to amuse himself. He accommodated Mahlon's special needs by getting things for him; by pushing his chair for endless hours in order to play the outdoor games they wanted to play; by teaching other children how to play with Mahlon; by modifying physical games so Mahlon could be included. No one made him do it, he just did it. My little family was working pretty well, even after we got a new house on our own.

Still, there were those lonely evenings when I would sit alone in the living room -- candles lit, George Winston music playing on the stereo -- wondering if things would ever be any different.

"Will anyone ever want us? The guys I've dated never quite work out. Some like me well enough, but don't want kids. Some say they like kids, but when they see the responsibilities I have they suddenly remember an old girlfriend who just came back to town. And some just wanted to have a good time. Hey Mr. Right! If you're out there, come soon -- please."

My dating was not a total waste of time. I learned something from each experience. I sifted and sorted the information and determined what I really wanted in a mate. I set my standards high because I felt I had a lot to offer in a relationship. I had come so far in building my self esteem and gaining new confidence. I wasn't willing to settle for just any marriage. I was doing okay on my own. And if I was going to be on my own from now on, I decided I'd move to a new place -- to a climate I liked better and to a place where more people shared my interests. I'd go to the coast!

My parents and friends didn't want me to move, but instinctively I felt it was the right thing to do. After all, I was the one who had to live my life. So I moved despite the opposition and soon met a man who really matched me. A man who loved me and my family. Special needs didn't scare him off; he was up to the challenge of it all.

And guess what? Even though we're a happy family, it still isn't easy to make decisions about Mahlon's needs and it still isn't easy to balance attention between the boys! But sharing the load does make it easier to bear.

Single parenting a special needs child is lonely, frustrating, challenging and exhausting. So if you're doing it, give yourself a pat on the back. You deserve it! And give yourself permission for personal pleasure. Ask people to help you. Find out about agencies that can offer assistance of any kind. Talk to other single parents. And take good care of you.

The real issue in single parenting a child with special needs is not whether you can survive, but whether you can survive retaining enough of your self to make survival fulfilling and enjoyable.

My second marriage is a healthy one because I brought to it all the skills and courage I developed as a single parent. I'll never forget those five long years, because single parenting is the hardest thing I've ever done.

PHOTO : Mahlon in his A-frame cast after surgery.

PHOTO : Mahlon and his brother, Michael, have fun in the tub.

PHOTO : Kate Divine McAnaney is the regional coordinator for United Cerebral Palsy of Monterey and Santa Cruz Counties, Calif. She is a graduate of the University of California-Davis. She lives in Carmel Valley, Calif. with her husband Patrick and their two sons, Mahlon, 12, and Michael, 10.
COPYRIGHT 1989 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1989 Gale, Cengage Learning. All rights reserved.

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Author:McAnaney, Kate Divine
Publication:The Exceptional Parent
Date:Jul 1, 1989
Words:2750
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