DEDICATED MOM HOLDS HOPE SON WILL GET NEW LUNGS
By Fred Dickey
Just as we get a toehold into December, a mother and son are anxious to rip the month from the calendar, and thus to learn if the boy will have a new chance at life. If not, hope will carry a sad face into 2016.
The room is shadowy, and the slim figure lying in the bed is quiet. The oxygen tube is a silent protector of teenage Caleb as he sleeps.
The boy's mother, Erin Mathis, stands next to the bed and is joined by a hospital social worker to discuss Caleb's situation. Erin has asked to take him home to Escondido to be close to family and because of the almost 500-mile commute to Stanford University Hospital.
The social worker is a nice woman, trying to be helpful when she asks, "Would you like us to contact a hospice down there?"
The word "hospice" is one sledgehammer blow too many. Erin flees the room and makes her way down the elevator and out the door, running from something she knows will follow her.
In the parking lot, she collapses next to her car and sobs her protest at the ordeal her son has to endure.
That was two years ago, and the tears still flow, but often at night on Erin's pillow. Caleb, now 17, rallied from his near-death distress, but his cystic fibrosis is patient, waiting like a cat at a burrow.
Caleb was born with the disease, which attacks the respiratory system. He's got a tough version of it. He lived a pretty normal life for a dozen years but gradually declined until the crisis at Stanford.
For his mother, too, things got tougher.
Professionals who work with families with afflicted children will tell you that the situation is often death to a marriage. It's not simply that one parent doesn't care. The constant stress wears the marriage fabric threadbare. When tension needs to vent, the partner is the one who's handy. Child care distracts from intimacy, and "I love you" is said in passing, if at all.
When that happens, one parent - experts said it's usually the father - often packs up his guilt and departs. That doesn't make him a bad guy. It just means it's impossible to stay. It happens frequently, and who's right and who's wrong is a question without an easy answer.
What remains behind are consequences. Erin now has to run the home on child and spousal support for herself, Caleb and his two younger sisters. For a lot of mothers, including her, that adds up to tough math.
Erin says she needed gas the other day but was shocked to find out her checking account was minus $6.
"I tried to get gas, but I waited till today, and then I got my child support so I can get some gas and some food."
Come the first of the year, their modest tract house in Escondido will go up for sale. Erin says she'll have to look for an apartment that she hopes will somewhat replace the only home the kids have known.
I ask if anyone else has come into her life.
"No ... no," she says, then chuckles a little sadly. "I'm 44. I have three kids, and one of them is sick. I doubt if I'm a real catch here."
Erin is a bright woman with a college degree, but she hasn't worked in almost 20 years because of Caleb's needs. She'd like to earn extra money, like for Christmas, but doesn't see a practical way for that to happen.
"I wish I could see a way to do that, but my need is here." She sighs. "It's taken a lot out of me, the divorce and all. The kids' father has been attentive to them, and honors his financial obligation, and I'm grateful for that. But the whole thing's been awful. The last few years, the divorce on top of it, it's been very hard."
Erin is matter-of-fact in discussing all this, but she suddenly stops, and tears come to her eyes. "I feel abandoned," she says to me - and beyond.
Carol Del Signore is executive director of Conner's Cause for Children, an advocacy group in Encinitas. She says of Erin's efforts, "Her strength is inspiring. She wakes up every day to take care of Caleb's needs and those of her other children."
Erin and her son are not giving in to cystic fibrosis. They are petitioning for Caleb to receive a double-lung transplant to lessen the control of the ugly organisms working overtime to take his life.
In January, a committee at UC San Diego Medical Center will consider putting Caleb on an approved list for the transplant. There is medical hesitancy because he is considered a "high risk" patient. In other words, there are other patients who would have a better chance for long-term survival.
It's a cold calculation. It has to be.
If Caleb is rejected next month, then Erin says they will turn to other transplant providers back east. But the UC San Diego denial would be a harsh blow.
Cystic fibrosis is a disease transmitted genetically. If a protein with the inoffensive name CFTR turns outlaw and both the mother and father carry it, as do Caleb's parents, the chances are one in four that their offspring will contract the disease. Caleb's two sisters did not, but Caleb became one of 70,000 afflicted with cystic fibrosis worldwide, half in this country.
Cystic fibrosis causes a thick mucus to accumulate in the lungs. That creates a comfortable home for especially nasty bacteria that seek a warm, moist environment. The infection can make breathing increasingly difficult and lead to the failure of other organs. Life span for sufferers is iffy, but old age is not going to happen.
In trying to hold Caleb's disease at bay, doctors have put him on a course of powerful antibiotics to fight the resistant bacteria that are trying to swallow his lungs. The drugs have made progress, but at a cost. These antibiotics have plowed deeply through his body with collateral damage, and have destroyed the nerves that enable him to hear.
Caleb is now deaf. Has been more than a year. He is also diabetic.
Caleb has had better days. "He had an active childhood that left him with fond memories," Erin says. "As a young child, he had a lot of friends, he went to school and he played outside, a lot of soccer."
The deterioration began about four years ago and peaked at Stanford hospital in 2013. "He was very sick because the bacteria were making him have a lot of fevers.
"He was very weak. We thought maybe he wouldn't make it."
Caleb has learned emotional evenness, at least on the surface. That's an old man's trick practiced by a teenage boy. He knows that "up" has a companion named "down."
School, for example. Caleb loved school, but was forced to stop attending classes in his sophomore year. Now, he has only online courses. For a gregarious kid, that has the taste of cardboard.
Caleb is a friendly kid who patiently watches us talk but can't participate. Remember, he's deaf. I write him questions on a pad about his frame of mind. He answers in the uneven voice of people unable to hear themselves talk.
Caleb, with a transplant a possibility, do you dream about having healthy lungs?
"I used to think about it a lot. Now, I don't think about it too much lately because I've just settled into this life and have gotten used to it. I used to dream about it. I still do occasionally, I guess."
If you're not approved by UC San Diego?
"That would be a bummer. I'm excited about getting better lungs and being able to do more outdoors and stuff."
How do you cope with being deaf?
"It's really tough. It's like it completely changes your life, because you'll never be able to just go outside and talk to people, or meet new people. I miss people."
This is a nice family: a doting mom, two lively girls and a boy who is brave about the uncertainty that clings to him in an unwanted embrace.
Erin is trapped with her son in their cage of misfortune.
Together, the family will face Christmas, the realtor's sign, the moving van and Caleb's hoped-for operation.
And whatever lies beyond.
Fred Dickey's home page is freddickey.net. He believes every life is an adventure and welcomes ideas at firstname.lastname@example.org.
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