09/13/2012 05:29 pm ET Updated Nov 13, 2012

Coping with an Adult Child's Debilitating Illness and Finding Joy

I've wanted to write about my dear friend Laura for almost twenty years. There is no one on earth like her. For one thing, she is brilliant... a poet, lyricist and novelist. Her notes to the kids' teachers could have won Pulitzers. She is also hysterical (think Jon Stewart with pathos in a dress and Birkenstocks). She takes action when other women merely talk about taking action. She has been a remarkable mother and the most generous, loving woman I have ever known. She feeds the hungry, takes in the homeless and counsels the bereaved.

When a close mutual friend (who also happens to be Laura's cousin) lost her daughter, Laura dedicated a year of her life to bringing our grieving friend back into the world of the living. She is a character worthy of Tolstoy, which is probably why I never felt up to the task of reducing her potent life force to words on paper. Now that I am finally writing about Laura, it grieves me to no end to be writing about her not as a brilliant writer or humble philanthropist or girlfriend extraordinaire. I am writing about Laura as the mother of an adult child with a catastrophic, often fatal illness for which there is no known cure. As is the case with every other event in her life, Laura has handled this shattering blow with awesome grace.

B, her son whose privacy I will respect by not using his full name, was diagnosed with Gardner Syndrome, "an extremely rare genetic gastrointestinal nightmare" as Laura puts it, thirteen years ago at the age of 21. The disease has robbed him of a normal adulthood as it has robbed Laura and her husband of a peaceful middle age. The cost of this disease, or any catastrophic incurable disease, is staggering -- physically, emotionally, and financially. It is unthinkable to negotiate this rocky terrain alone. This is why Laura became BFF's with Kayla, whose son, J, also suffers from this insidious disease.

When I arrive at Laura's home to speak with the two women about their lives as mothers of grown-up sons afflicted with a debilitating illness from which they are not likely to recover, I can tell there is a bond between them that is somehow even stronger than the one it has taken Laura and me twenty years of friendship to forge. Under ordinary circumstances I might be jealous, but these are no ordinary circumstances, and I find myself feeling grateful that these women have found each other. Before I take a single note, I know that if I am going to give any practical tips to parents in similar circumstances, the most important will be to find someone who understands... someone who walks in their shoes. I have been as supportive as I can be for Laura. I have cooked for her family. I have been a listening ear and a shoulder to cry on. But Kayla understands.

"Every morning begins with a support group," the women tell me. "We reel and rally. Reel and rally. That's our mantra."

So what exactly does rallying mean?

1. First and foremost, rallying means getting off your knees.

"I buried two children within days of their birth," Kayla says, "I survived cancer three times. But this diagnosis, this brought me to my knees. The only thing modern doctors can think of in dealing with this disease is to remove body parts one at a time. And the pain quotient is enormous. J once told me he was contemplating suicide. And I told him that as much as I would miss him, I love him enough to support whatever decision he makes. What else could I say in the face of all that pain?"

"When the doctor couldn't look at me while he explained the diagnosis, I knew the world had ended," Laura says.

The world hadn't ended, but it had changed drastically and these mothers had to change along with it.

2. Rallying means dealing with mountains of paperwork.

One of the differences between parenting a young child with a chronic disease and parenting a stricken adult child is the work required in order to simply be there for your child and to know what's going on. When your child is no longer a minor, you are officially out of the loop unless you prepare the proper paperwork to allow you to speak with doctors on your child's behalf. Do not wait a half a second to become a medical advocate for your child. Sometimes a single release signed by your child will work for all or most of your care providers. More commonly, every hospital, doctor, surgeon and health records administrator has their own paperwork to fill out. Adult children have bank accounts and mail boxes. See that you get permission to monitor both.

There are insurance papers, health records papers, government papers, aid papers, pharmaceutical papers, surgery papers and papers that I have forgotten to mention that must be filled out in a timely fashion while you are under duress. Try to stay organized.
In no other area of life is organization and neatness as important. Keep files properly labeled. Keep ALL documents, even if you think they are unimportant. Keep doctors phone numbers and addresses in an easily accessible place. If you are incapable of such organization, hire someone to organize for you or find an organized friend to volunteer.

Laura is so meticulous that she helps other people organize their lives, yet this deluge of administrative minutia overwhelmed her. Fortunately, she had a friend who, for several years, often spent 10 hours a day on paperwork. This is simply too exhausting a task for a weakened patient to do on his own.

3. Rallying means you may have to "divorce" your child financially.
By most measures, Laura is affluent. The disease has crippled Kayla financially, which is one of the reasons she moved in with Laura and her equally generous husband, Jim, until she could get back on her feet. "The difference between wealth and poverty for families in the throes of this process is eighteen months," Laura says. "No matter how much money you have, you can't sustain a rare catastrophic disease." Her advice is to NEVER pay a bill for your child. The minute you can breathe after being told the diagnosis, find a social security/Medicaid lawyer to help you get help. The alternative is abject poverty. I remember Laura telling me that B's monthly medication bill after insurance was in the thousands of dollars. Managing the disease costs millions.

4. Rallying means finding joy in your life. It doesn't mean pretending to be happy.
To Laura and Kayla, rallying means really being seriously happy. From where I sit this seems impossible. I have watched my soul sister cope with this scourge for thirteen years. B has had several organs removed. He has drains and ports in several places on his person. The family has lost count of the hospitalizations, a few of which have lasted for months. He has suffered pain and humiliation beyond comprehension, the details of which I cannot bring myself to post. B will never have children, though he has found love with an angel who has been by his side through times so trying that even Laura, grateful beyond words for this woman's presence in their lives, has coaxed her to run for hers. B will never travel. He has written almost every normative adult milestone off of his life's menu. The same is true of J. Yet, these women still know how to have a good time. They laugh and they make me laugh. They enjoy a well-prepared meal. They find beauty in the smallest things and they find spirituality in a world where it seems God has abandoned them.

"When my son decided to keep on living," Kayla says. "I decided that I had to find a way to live too."

"If I'm grieving that my child is in danger of losing his life, that presupposes that life is good," Laura explains. "And if life is good, I shouldn't throw mine away. I believe we can't banish darkness from our lives. All we can do is create light. Kayla and I have made a commitment to fill ourselves up with so much joy there isn't room for the darkness."

I am awed into immobility as she continues.

"B knows what his illness has done to the family. He already feels guilty about the toll this has taken. Knowing that, the very best thing I can do for my son is to have a good day."

This is why, for twenty years I've wanted to write about Laura.