|Jeff Lester and Daughter Kesley in 1997
Most parents never forget the first time they held their newborn children. The flood of emotions experienced in that moment ranges from indescribable joy to absolute terror as the reality of parental responsibility sinks in.
While many of those affected by ALS are over 45 at the time of diagnosis and have already had children, a significant percentage of new ALS patients are in their 30s or younger. They may still be undecided about parenthood.
In February 2001, Kristin Sauer made the journey from her home in Waupun, Wis., to the world-renowned Mayo Clinic in Rochester, Minn. Six months earlier, she'd begun to experience pain and a loss of dexterity in her right hand. She was only 24.
At the Mayo Clinic, Kristin underwent numerous tests to determine the cause of her chronic problem — and to find out why the medicines she was taking for symptom relief were making her nauseated.
That day, doctors dropped a double bombshell on Sauer — not only confirming that she had ALS, but that she was pregnant as well.
Sauer and her husband, Tim, tried to figure out what to do next.
"At first we considered putting the baby up for adoption," Sauer recalls. "Tim didn't know how he could take care of both a wife with ALS and a baby. It was overwhelming."
In October, a healthy Clay Sauer was born.
For his first four months, Clay lived with Kristin's brother and his wife, with the possibility that they'd eventually adopt him. But Kristin and Tim soon realized that she needed Clay — almost as much as her son needed her.
"At first they didn't think it was possible to have him at home," explains Mary Westra, Kristin's mother. "Eventually they realized that they just had to have him in their life — at home and not someplace else."
Love, life and ALS
Because most people with ALS eventually become quadriplegic, a common misconception exists that someone with ALS is incapable of enjoying an active sex life.
Jeff Lester of Ellisville, Mo., begs to differ.
Lester, 35, received a diagnosis of ALS in October 1993. At first, he struggled with the issue of what to tell his then-girlfriend, Lisa.
"It was one thing for me to decide to fight this disease," Lester explains. "But it was a whole different thing to bring someone you love into that fight."
In the end, he simply told her the truth and let her make up her own mind. They were married in October 1994.
"I cannot imagine battling ALS without my partner, wife and best friend," he says today.
From the beginning, the couple was determined to create a life that was as "normal" as possible. That included talk of having children.
"We were told not to make any long-range plans, and that Lisa wouldn't be able to care for me for very long," Lester recalls. "That was more than eight years ago and we're still fighting ALS together."
As a testament to the Lesters' love for each other, their daughter Kelsey was born in the summer of 1995.
What ALS doesn't affect
ALS attacks the motor neurons and primarily affects the voluntary muscles of the body, those that we can move at will.
So while a person with ALS may lose control of all or most voluntary muscle functions, a different part of the nervous system — called the autonomic nervous system — is largely unaffected.
The ability to enjoy sexual relations is among the functions of the autonomic nervous system.
"The reaction of our family and friends at first was excitement followed by the delicate question ‘How?'" Lester recalls.
Today, Lester continues his pursuit of a "normal" life, even though in 1997 he began using a ventilator for respiration.
"I continue to have an active love life," he says.
And the Lesters' second daughter, Emily, is due at the end of July.
More than changing diapers
Kristin Sauer isn't able to change 8-month-old Clay's diapers, though she actively supervises her son's care.
"She holds him and he sits with her and drinks his bottle," Grandma Westra reports. "He's been a real joy."
And while Jeff Lester is physically unable to hug or play with his 7-year-old daughter, it doesn't stop him from being Daddy.
"I have gotten the opportunity to influence her morals and values, and take part in her education," he says proudly. "And we've found our own ways to play together — including me becoming a makeup and hairstyling doll. Our decision to have a child has never been questioned in our minds."
Lester also reports that fatherhood has sparked an interest in genealogy.
"I have been able to trace several family lines back to the 1600s and 1700s because of the Internet and today's computer technology," Lester explains. "I really believe that I will be able to leave the future generations of my family a great gift of their family history."
What children need
Becoming a parent isn't a decision to be taken lightly, whether you have a disability or not.
There's no doubt about it: Being a parent is both the most difficult job a person can undertake, and the most rewarding.
In many respects, taking care of a child is a lot like taking care of someone affected by ALS. If you can face each day as a series of logistical challenges, and you have a committed family, it can be done.
But the most important thing a child needs from his or her parents is an almost inexhaustible supply of love.
And love, like sex, is a part of the human experience that ALS can't touch.