by Albert Freedman

 

The Freedman family, from left, Cara, Albert, Jack and Anne

When our 6-month-old son, Jack, was diagnosed with spinal muscular atrophy (SMA) in 1995, doctors broke the news to my wife and me gently but honestly. Our baby would never be able to sit up or walk. Jack would have problems eating and breathing, and he would likely die within a year. SMA is a genetic disease, we were told, so there was a one-in-four chance that a baby we conceived in the future would face the same fate.

During the next two weeks, we returned to the hospital for more appointments with doctors and nurses. Medical professionals taught us everything they thought we should know about taking care of our baby. Breathing machines, feeding tubes, respiratory therapy and CPR the medical equipment and techniques necessary to care for Jacks physical needs were the focus of their attention and ours.

At the time, Anne and I didnt question the emphasis on our babys physical needs. Looking back eight years later, I find it remarkable that we were never introduced to a mental health professional when we were told of Jacks diagnosis and prognosis.

While each of the medical professionals at the hospital recognized that our lives had been turned upside down, counseling support was neither provided nor recommended. No one discussed our emotional needs, or Jacks. And remarkably, I didnt recognize this omission.

Imagination and Reality

There are some parts of those first few weeks that I dont remember at all, and other pieces I remember quite vividly. I remember crying the day the doctors told us our son had an incurable, untreatable neuromuscular disease.

I remember not being able to sleep very well, and when I eventually did nod off, my sleep was often interrupted by frightening thoughts and dreams. My appetite changed; foods that I typically enjoyed seemed to lose their taste. I felt sad and hopeless and exhausted and numb, but I didnt know what to do to help myself feel better.

At times, I wondered if I was falling into a depression.

I remember driving 40 miles per hour in the right lane of an interstate highway, figuring that if I wasnt very careful, another terrible thing could happen to my family or to me.

The weather had turned cold, but I was afraid to light the fireplace. It didnt feel safe after all, anything can happen, anytime, I told myself.

At times, I wondered if I was developing an anxiety disorder.

About a week later, I saw a little boy with his mother standing in front of the post office, and for a moment I imagined I was seeing Jack, 3 years old and walking. A few seconds passed before I reminded myself this child couldnt be Jack. Jack would never walk.

The reality of our situation hit me like a ton of bricks at that moment. A wave of dread passed through me, just as it did when we drove past a Little League field and for a moment I imagined I saw Jack running the bases.

At times, I wondered if I was experiencing visual hallucinations.

Every few days, I managed to jump out of bed in the morning. I told myself everything was going to be all right, somehow. I laughed and played with Jack, forgetting everything I had heard from the doctors.

After a while, I realized Jack needed me to be his father exactly the same way every child needs a father. So I followed his lead and began having fun again, a little at a time.

At times, I wondered if I was "in denial."

Finding Help

We were living in the Hudson Valley area of New York while I was completing a doctoral-level psychology internship. The irony wasnt lost on me that it was now I who was sorely in need of counseling support.

I visited a local psychologist and told her our story.

While I was well aware of Elizabeth LaFarges credentials as a psychologist, I wondered if she could possibly understand what I was feeling and thinking and going through. I remember struggling to explain to the doctor how I had coped during those two long weeks. I asked her if she felt the ways I was reacting to and coping with our situation were reasonable.

What she told me that day helped a great deal. She looked me in the eye and said, "Al, whatever youre doing to help yourself cope right now is fine; keep doing whatever helps you to take care of yourself and your family.

"I would be much more worried if you werent feeling sad or scared or anxious or exhausted. If you came in here and told me you were doing just fine, that would be bizarre."

Anne and I continued to meet with LaFarge regularly during the year we lived in New York. As we made a series of important decisions about our future and Jacks, our counselors presence and perspective were invaluable.

Applying the Lessons

As a psychologist who specializes in child, adolescent and family psychotherapy, I now help a number of families with children affected by a variety of disabilities. As I conduct my work now, I often remind myself of the ways in which Elizabeth LaFarge helped Anne and me during those first weeks and months of our parenting journey with Jack.

Of course, the trauma experienced by a family at the time of diagnosis is only the beginning of a long, emotional journey. Every aspect of an affected persons life, and the lives of immediate family members, is touched by neuromuscular disease.

Following Jacks diagnosis, we were faced with several complicated decisions about how and whether to conceive another child. Jack was hospitalized for a total of 60 nights before his third birthday. As Jack grew, we were faced with the challenges of travel, bathing and wheelchair access.

Every day were acutely aware of the reality of Jacks medical fragility and fearful of exposing him to other peoples illnesses.

The other reality, of course, is this: Eight years after Anne and I were told our baby wouldnt live past the age of 2, Jack is alive, hes happy, and he enjoys many opportunities we could never have imagined back in 1995. And our family now includes Cara, our 4-year-old adopted daughter.

As a psychologist and as Jacks father, Im often asked for advice on the complicated task of parenting a child with a disability. While its important to remember that no two children or families living with neuromuscular disease are exactly alike, some strategies for coping may be helpful for many.

Follow Your Childs Lead

When doctors told us about SMA and what the diagnosis meant for Jack, we sat in silence. But to Jack, nothing was different after all those medical tests. He wanted to get back in his stroller, keep moving, and get back home to the happy life of a 6-month-old. For Anne and me, and our families, getting back to our happy lives was easier said than done.

But I came to realize that just as we had followed Jacks lead that awful day in the hospital, he would show us the way with his happy outlook and determination. Now, we not only need to keep up with his positive attitude, but we need to keep up as he motors along in his wheelchair, full steam ahead.

Children are inherently happy. Happiness can be "contagious"; if we can allow ourselves to "catch it" from our kids, coping with the challenges associated with neuromuscular disease may become less difficult. Jacks happiness helps me and Anne take emotional breaks from our own set of challenges.

Stay Anchored in Your Community

For six years, we were fortunate to be part of an unusually strong and close community at Westtown School, a 200-year-old Quaker boarding school near Philadelphia. During our years of living on the school campus, the students and staff were generous with their time and resources in support of Jack.

One summer, 20 teachers and students, with materials and support from the school, helped us build a deck onto our campus home so Jack could more easily enjoy the outdoors.

Being included helped Jack feel connected to the community, and helped the community feel closer to Jack. He continues to be fortunate to have many friends who care about him.

Keeping connected with friends, family and community provides others the opportunity to get to know and feel comfortable with your child, and can provide you and your child with the extra support you need. Because of the challenges inherent in caring for a physically disabled child, its not always easy to include our children in day-to-day activities. But connecting with others is worth the effort.

Get Connected With MDA

While the support of friends and family is important, most people cant identify with the day-to-day challenges of neuromuscular disease. The support of other families with affected children can help. MDAs support groups provide opportunities for families to connect with one another.

Being connected to MDA also lets us do something to improve the lives of children affected by neuromuscular disease by raising funds for research and medical services. So much about our situation is out of our control, and it feels satisfying to do something concrete to help.

Be Good to Yourself

Typically, parents of children with severe disabilities pay attention to their own needs last. This is natural.

But its important for parents to take breaks, individually and as couples. Anne and I use our nursing help, whenever possible, to let us spend time together. Even if our "date" is only for two hours, these breaks allow us to spend time as a couple and to talk about things we rarely have time to discuss.

When Im able, I run a few miles outdoors to keep myself healthy. Anne enjoys going on walks and to an occasional movie. Giving ourselves permission to take care of our own needs, as were able, allows us to gather the emotional and physical energy we need to care for our loved ones.

Appreciate Every Day

With time, I found my perspective shifting away from the difficulties we faced. What I didnt anticipate was that some of the changes in our lives would have positive consequences. Now, I genuinely appreciate every day with Jack and take nothing for granted.

The day-to-day problems that cause frustration for other people dont affect me in the same ways other peoples big problems are our small problems. Our perspectives are different, and in some ways deepened by our unusual experience. If were able to appreciate each and every day as a gift, our parenting journey may feel more meaningful, and less stressful, to each of us.

Albert Freedman, Ph.D., is a child, adolescent, and family psychologist in private practice in West Chester, Pa. He provides consultation and training to professionals in health care and educational settings, and frequently speaks and writes about caring for children with special needs. Freedman may be contacted at freedman@fsma.org.

For a related story see Therapy Is Where You Find It