Because I'm the Mom

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Their Child Was Supposed to Die - Now What?

Beloved disabled child lives for decades - now her parents need care, too

Fostering Love: Beloved child expected to die in months lives for decades. Now what?

Now in their 60s, her ailing parents need care, too

Tom and Maryjane Famulari are the kind of extraordinary people you read about and think they must be angels. That's certainly what I thought 23 years ago when I had the privilege of meeting them and telling their story. I was 22, just out of college and a reporting intern at The Washington Post. The Famularis were a loving Maryland couple, both 40 years old. They had their two teenage children at home. On the modest salary of Tom's job as a high school biology teacher, they took in a profoundly ill, 'medically fragile' newborn who required round-the-clock care and who, they were told, was destined to die soon.

 And they could not have felt more blessed.  

They invited me into their home and introduced their daughter Bridgette, and their life, to me. I was overwhelmed and grateful to have the chance to share their story with our readers. Their expansive love and faith were incomprehensible to me, a single, twentysomething with a lasar-like focus on my career and myself. Theirs was a kind of selflessness I didn't understand. They knew she was going to break their hearts and yet they gave their hearts entirely to her. They loved her to life, to live.

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Here is how I began the story that ran Aug. 13, 1988, on the front page of The Washington Post, beneath the headline:

(Note: At the time, the accepted word to describe Bridgette's condition was 'retarded.' Today we no longer use that word.)

The Joys of Fostering a Special Child; Disabled Girl Teaches Md. Family Unconditional Love.  

Tom and Maryjane Famulari already have made plans for their 2 1/2-year-old foster daughter's funeral: The service will be the Mass of the Angels, her dress will be lavender with a white pinafore, and they will play her favorite song, "Hosanna."

Their daughter Bridgette is a 28-pound child who was born three months prematurely. She is profoundly retarded, has cerebral palsy and breathes through a transparent tube that runs from a hole at the base of her throat to a steel oxygen tank near her crib. She has been hospitalized more than 80 times.

Despite her long list of medical problems, the Famularis agreed at Bridgette's birth to become her foster parents. "She gives so much more than we can give to her," said Tom Famulari, 40, a high school biology teacher in Baltimore.

"Everybody needs love and to die in dignity," said homemaker Maryjane Famulari, 40, coaxing a pout from her daughter that quickly slid into a contagious smile. "She knows what it is to be loved. She can't hold her head up, but she has a joy about her that I can't explain."

'On Death and Dying'

I could not get my head around the kind of love these people described. I just didn't get it.  They told me how they couldn't be more than 10 seconds away from her because she could not cry to let them know she was in distress. She could go from fine to critical in seconds. They seemed unafraid of loss and death. Why did they do this? To find out, I thought, who is the most brilliant thinker and writer on the topic of death and dying? I figured: I'm calling as a reporter from The Washington Post!!  Everybody will talk to me! And it worked. I got Dr. Elisabeth Kubler-Ross, the internationally known Swiss-born physician and expert on death and dying, on the phone. At the time she ran workshops in Virginia and placed babies born with AIDS in homes nationwide. Here's part of our interview I included in the story:

  "There are very few people in this nation who know what unconditional love is all about," said Dr. Elisabeth Kubler-Ross. "But these people know it, and these children know it." The foster parents, she said, "have learned the ultimate lesson of life: love has no strings, no expectations attached, no hooks. So you love them while you have them. These people are not loving with the expectation of becoming a grandparent. They just love them."

 So what happened to them?

I am ashamed to tell you I did not follow up nor keep in touch with this amazing family. I thought of them often, wondering how long Bridgette had lived, if the funeral went as they had planned, and marveled at how remarkable it was that she thrived. 

Two and a half decades would pass before I got the answer. I received an e-mail from Tom recently. Desperate, he Googled the name of that young reporter who wrote about his family so long ago, to see if she remembered them and might be able to help. He found me and sent an e-mail telling me what has happened.

 'She shouts of love and God's grace'

 This is what he wrote:

Bridgette is now 26 years old and weighs about 115 lbs. A far cry from her birth weight. She is truly a joy. She may be non-verbal but she shouts of love and God's grace. We have been so blessed by her and her life. She has been admitted to the hospital 62 times but we have been able to keep her stable for the last several years. She is presently on a vent, constant oxygen, wheelchair bound. She has a central line where we draw her blood and have given her IV meds when needed still with a feeding tube. We have traveled with her from Canada to Florida and have gone camping with her as far west as Branson, Missouri. She has touched the lives of so many people that we can't count them. She has, with her life, inspired other families to take in medically fragile children.

Maryjane and I realized that the day would come that we would not be able to properly care for her. We started looking 3 years ago and found the perfect residential place for her. We have  since had many medical problems. We have been trying for more than 2 years to get the Maryland Department of Disabilities Administration to fund her placement. We have been told that most likely will not happen. We went through all the procedures and then they changed the rules mid- stream and we needed to start over again we have been frustrated at every turn. 

Part of the Sandwich Generation squeezed harder than most

He wondered if I could help. After all this time. It was striking. Imagine the desperation, I thought, for him to feel compelled to reach back nearly 25 years and see if I might be able to do something. They formally adopted Bridgette in 1990 so for life — theirs and hers — she is family.

It turns out that even though the Famularis are extraordinary in so many ways, they are also quite ordinary people in their mid-60s, suffering from numerous health issues like so many Americans. Unlike many of their peers, their own medical challenges are compounded by their incredibly loving struggle to care for their 26-year-old daughter. Maryjane was forced to quit work because of a painful health condition and Tom is recovering from knee surgery and back surgery.

As members of the Sandwich Generation, Tom and Maryjane are grandparents. They are not only struggling to care for their daughter and themselves, they are also deeply concerned about the health and wellbeing of Maryjane's parents, who are in their 80s.

They are now battling the state of Maryland to place their daughter into a nearby, loving, safe and medically-equipped residential placement. They have spent three years uncovering and attempting to correct monumental bureaucratic paperwork snafus and a laundry list of errors and obstacles.

'She really enjoys people and life'

But just like all those years ago, Tom says it's all worth it. Bridgette lights their lives. "She's a very, very happy person. She smiles all the time. She really enjoys people and life." Bridgette loves music and adores musicals, he says. "For a time I think she thought Julie Andrews was a part of the family."

'Unconditional love'

In the end, Bridgette's parents are motivated by the same beliefs they held nearly 25 years ago when they took in and enveloped in love a profoundly damaged newborn. "She's one of the toughest little people around," Tom says when I talked to him on the phone this week. "I tell people, it's not 'poor Bridgette.' Don't ever think that. She is a very happy person. We believe she is here," Tom says, "to teach others about unconditional love."

I can't help but think of my mother's favorite expression: 'The apple don't fall far from the tree.'

Pamela Cytrynbaum teaches at Northwestern University's Medill School of Journalism.

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