And gently lead those that are with young. Isaiah 40:11

Monday, November 30, 2009



This Far Side cartoon by Gary Larson frequently resembles the cry of my life: "God, my brain is full, may I please be excused?"

It’s easy to get overwhelmed by the needs of a special family. School appointments, work demands, tasks of daily life, conflicting schedules, overbooked medical and therapeutic appointments -- we go on like the Energizer Bunny who keeps going and going, until all of a sudden, thud.

Though we intuitively know our bodies and minds are not created for endless activity and stress, we often push ourselves as though they are. The demands of our lives are plenty. So how can we ride out the storms that overwhelm us? By anchoring our minds and hearts on the Lord. When there is a storm raging outside or inside, we must remember that it's safer to stay anchored to God than it is to go with the flow of the tide that threatens to pull us under.

In 1 Corinthians chapter 14 we are told that God is not the author of confusion, but of peace. I offer these suggestions as possible routes toward finding His peace:

Concentrate only on the things that are necessary. Ask God to help you discern what needs to be done. I have a doctor-friend who says in times of difficulty we need to triage. Treat your life like an ER and triage your troubles.

Meditate on Biblical teachings and stories that resonate with your situation or frame of mind. Remember the miracle of the single loaf that Christ used to feed many? Perhaps you can break your tasks into smaller parts to accomplish the many. Is there a way to work on one little piece at a time?

Read "The Sacrament of the Present Moment" by Jean-Pierre de Caussade. "The will of God is manifest in each moment, an immense ocean which only the heart fathoms insofar as it overflows with faith, trust and love."

Rest in the Lord. This need not entail attending a service or sitting for a half hour in contemplative prayer (although both are recommended when possible). Take any moment you can and use it for good. Waiting at a red light? Visit with the Lord. Loading the dryer? Let Jesus help you load the clothes. Walking in the grocery store? Take the hand of Christ and walk with Him. It is when we are worn out that anxious sensations come over us. We must let God into every moment of our lives. He is waiting for us to invite Him in.

It is important that we hold on to the truth that the darkness of our situations can never diminish the Light of Christ. It may seem like the world is crumbling around us, but God can, and will lift us. He will set our feet upon the rock.

God promises us that when life is overwhelming He will work with us.

Psalm 61, verse 2 offers some support in this direction: "From the end of the earth I will cry to You when my heart is overwhelmed. Lead me to the Rock that is higher than I."

Remember that in the midst of our tears we can find that God is good, and in the bleakest of situations we can find hope. With God’s grace, we will transform the circumstances of our lives into refining experiences that help us become the people He wants us to be, knows we can be, and created us to be.

Go in peace this day. Love, Theresa

Dear Lord, when I am struggling with the demands of my special needs family or when I am overwhelmed with life itself, help me find your presence. Fill me with Your peace and draw me into a closer relationship with You. Remind me that nothing can stop the purpose and plan that You have for my life and the life of my children. Thank you for bringing us rest, and for being our Rock, our Shelter in the storm. AMEN.

Monday, November 23, 2009

Grace Before Meals: A Blessing and a Movement

As I try to find more creative ways to feed my son who is struggling with chewing and swallowing problems, I have found a new hero. His name is Father Leo Patalinghug.

Ordained in 1990, and working as a parish priest in Maryland, Father Patalinghug started a movement called Grace Before Meals. GBM first took shape when Fr. Patalinghug "turned the tables" on his parishioners who invited him to dinner -- he cooked for them! These times spent making a meal together provided the inspiration for his first book, Grace Before Meals: Recipes for Family Life.

GBM is about so much more than cooking, recipes and food. It is about strengthening relationships, building ties with one another, healing, understanding and love. Here are a few ways you can incorporate the GBM philosophy into your daily life (from his Website) : I encourage you to visit his Website ( and sign up for his Weekly Blasts if you feel so moved. I wrote and asked him if he would consider doing some recipes for tasty and nutritious pureed foods and thickened drinks for those of us with loved ones with chewing and swallowing issues, and he said he would.

Below please find a wonderful article about a family who chose not to get a feeding tube for their aged mother. No matter what side of the feeding tube issue you may stand on, I believe you will find it a tender and thoughtful story. Peace be with you tonight, my beautiful friends in the Lord. Love, Theresa

Alzheimer's and Eating: A Taste of Home
My patient wasn't eating. Why wouldn't her daughter allow a feeding tube? Toni Martin, MD.

The deep fragrance of soy and garlic wafted out to the nurses' station from Mrs. Lee's room, signaling that her daughter, Mrs. Wong, had arrived with lunch. Time for me to make rounds. Mrs. Wong was her mother's interpreter and advocate, as well as her cook. When I walked in, Mrs. Wong was untying the handles of white plastic bags bearing red Chinese lettering. Inside were rectangular plastic containers of food: a large portion of congee, the thick rice soup that was the staple of Mrs. Lee's diet. Smaller dishes of sesame-scented bean sprouts and cabbage. Buttery soft pork and noodles. I watched as Mrs. Wong broke off tiny morsels of soft, white steamed buns and poked them tenderly into her mother's mouth.

Mrs. Lee was a regular on the medical ward, usually admitted with pneumonia and dehydration. Her Alzheimer's disease was far advanced, and she often forgot to put the food in her mouth; if she remembered, she forgot to chew. Like many elderly patients who stop eating, she was almost unresponsive when we first saw her. After a few liters of intravenous fluid and antibiotics, she perked up. She reminded me of a tiny bird -- mostly bones, with shiny dark eyes. Even when she was feeling her best, she could not talk, but her eyes diligently tracked her daughter as she moved around the room.

We suspected aspiration as the cause of her recurrent pneumonia, although she swallowed well enough when Mrs. Wong prompted her. Between admissions she returned to a skilled nursing facility but never seemed to regain her strength. I assumed they did not take the time to feed her, but when I called to ask how she had been getting along, the nursing supervisor told me that Mrs. Wong fed her at least one meal there every day.

The sad fact was that despite her daughter's best efforts, Mrs. Lee did not eat enough calories to sustain herself. Other doctors before me had suggested placing a feeding tube in her stomach, a procedure known as percutaneous endoscopic gastrostomy (PEG). Then we could supplement her oral intake with a high-calorie liquid formula and possibly decrease the risk of aspiration. If she were not so malnourished, she might be able to fight the infections better. But Mrs. Wong had always refused.

When I broached the subject again, Mrs. Wong demonstrated that her mother could take a few bites of cabbage. She fed her two spoonfuls of congee. Then she called in her husband, who usually sat quietly in front of the elevator with more shopping bags. He spoke no better English than his wife, but I understood that his presence added authority to our conversation.

The next day on rounds, I called for a hospital interpreter. I wasn't sure I was communicating the concepts of quantity and calories. The Wongs had told me that they did not want Mrs. Lee resuscitated, but did they understand that antibiotics and fluids could not cure malnutrition?

After an animated exchange with the interpreter, Mrs. Wong opened another container, garlicky broccoli softened almost to a puree. Again she coaxed her mother into swallowing a spoonful, and the family beamed. The interpreter shrugged his shoulders.

"She understands," he assured me. "She wants to feed her mother. No tube." We all bowed slightly, and I left to write my note.

There are vast numbers of people with Alzheimer's disease: approximately 4.5 million Americans, including more than 40 percent of those over 85. Mrs. Lee was one of the lucky ones, because she had a caring daughter. Often I find myself negotiating treatment decisions with a county-appointed conservator because the patient has no relatives. In my California county, conservators will not authorize do-not-resuscitate status for permanently unresponsive nonverbal patients. If Mrs. Lee had a conservator, she would have had a feeding tube, even if she was so confused that her hands had to be tied down to keep her from pulling it out. Of course, the conservators don't have to visit the patients.

Had Mrs. Lee lived a few decades earlier, there would have been no PEG. When placing a permanent feeding tube meant opening the patient's abdomen, it was rarely done. Today an endoscopist passes a tube into the stomach and shines a fiber-optic light from the inside to mark a spot, and a surgeon cuts just enough to insert a feeding tube through the skin into the stomach. So easy. Easier than coaxing patients to eat or allowing them to die naturally. Very few people, even if they have told their families they do not want "heroic measures" at the end of life, have left instructions about tube feeding. This leaves physicians in the sort of moral quandary we found ourselves in with Mrs. Wong.

Meanwhile, at the hospital, another week passed. The utilization reviewer asked when Mrs. Lee would be leaving. Each time she was close to discharge, her temperature rose again or her oxygen needs increased. I cultured and X-rayed her again. I added antibiotics and arranged an infectious disease consultation, but it was clear she was failing.

I told Mrs. Wong that I didn't think her mother was going to make it this time. She said nothing. Mrs. Lee was less responsive now, but when Mrs. Wong lifted the oxygen mask to slip in a spoonful of congee, she swallowed. I nodded to Mr. Wong in front of the elevator. He reminded me of pictures I had seen of seated statues found in royal tombs in China. He sat in service to his dying mother-in-law the way they sat in eternal service to the dead.

When the elevator doors opened the next morning, he was not there. Mrs. Lee had died during the night. I never saw the Wongs again.

Mrs. Lee's last year frustrated her doctors. Despite our antibiotics, we knew she would not survive. It did not make sense to keep treating pneumonia without giving her more nutritional support. We wanted Mrs. Wong to allow us to treat all the way or to give up entirely.

Instead, she forced us to find another way. She understood that her mother was dying, that eating is the last activity of daily living that we lose. Perhaps she also knew that people still aspirate, even their saliva, when they have stomach tubes in place. Had she read that there is a mortality rate of 40 to 50 percent at six months in patients with gastronomy tubes? Probably not. We told her that it was easy to place a PEG. She taught us, again, that tough ethical decisions lurk behind easy procedures.

Mrs. Wong prevailed. Her mother's last nourishment was a rich taste of home from her daughter's hand.

-- Toni Martin, MD, is a board-certified internist and geriatrician who has practiced in Oakland, California, for 20 years. She has served as Chief of Patient Education at Kaiser Oakland and is a member of the clinical faculty at UCSF Medical School. She is also the author of How To Survive Medical School (Holt, Rinehart, and Winston, 1983). This essay first appeared in the July/August 1999 issue of Hippocrates and is reprinted here by permission of the author.

Friday, November 20, 2009

The Story of Dax and God's Helpers

Have you heard the story of 2 year old Dax from Illinois? It is a sad story, and I must tell you that I wept when I read it and saw the video on CNN. But as I dried my eyes I knew this blessed child accomplished so much in his short time on earth, and I very much wanted to help spread his story.

Dax's doctors say he may not make it to Christmas. He is battling a rare form of cancer, and treatments have now stopped. He knows he will be going to be with the angels. His family, neighborhood, and now countless others, are banding together to bring Christmas early to Dax.

The news reports tell us about the loss of a child, his parents, his family, their strength, God's grace, mercy, human endurance, love... And they tell us, too, about the helpers.

Dax's story is full; it tells us to love, and reminds us to focus on what is important in life. Let his story remind us too, that when we see someone in need, witness a tragedy, or know someone who is at the end of their ability to cope, God is probably calling us to be one of His helpers.

I encourage you to go to CNN's Website and watch the video of Dax. It is beautiful. I ask that we remember all children who are ill, and lift them and their parents up in prayer this day. Amen.


On a crisp Halloween night,icicle lights and Santa Clauses mingled with ghosts and jack-o'-lanterns in a Washington, Illinois, neighborhood.

The community is helping a family squeeze in a little extra holiday cheer with their young son.

Doctors say 2-year-old Dax Locke is losing his fight with acute myeloid leukemia and may only have weeks to live, so parents Julie and Austin Locke put Christmas lights up outside their home for the little boy, who loves glowing things. Dax opens presents each day under a tree that's already been up for several weeks.

"We don't have much time left with Dax, don't know if he will make it to Christmas, so we wanted to have Christmas early," Julie Locke told local news station WMBD.

Neighbor and friend Trish Hurtgen says she and her husband were inspired by the family's efforts, so they put up their own lights and encouraged neighbors to do the same. Soon, the entire block was lit up with Christmas lights. They also planned a special surprise for the family.

While the Lockes traveled to Chicago's Shedd Aquarium for a special trip with Dax, the neighborhood banded together to decorate a huge tree in the family's yard so the Lockes could be delighted when they returned just after Halloween.

From there, she and other neighbors have helped encourage people to show silent support for the family by putting up Christmas lights at home and around the community. The effort, called Decorate for Dax, has its own Web site with space for people everywhere to send pictures and see others' displays.

Hurtgen calls the Lockes a "family of courage" that she found inspirational, and she wanted to help if she could.

"This is a family who stayed united and formed a team to help Dax," Hurtgen said. "They gave everything they had. We're trying to do the same thing."

Dax has spent past holidays at St. Jude Children's Research Hospital in Memphis, Tennessee, but this year, he's at home. Save for receiving palliative radiation to improve his quality of life, he is off cancer treatments.

Hurtgen says Dax enjoys going for car rides and seeing the lights on around him. The family plans to make a book out of photos that people send so Dax will be able to see all the lights for Christmas if he's too sick to go outside.

iReporter Cindy Miller lives in the area and got involved in local neighborhood decorating projects. She posted a video on CNN iReport to raise awareness of the Decorate for Dax project. She narrated a drive through Dax's neighborhood shortly after Halloween, and many houses were illuminated.

During one project, locals put up lights and luminarias at a local park. Miller sent photos and video of the illuminated areas she spotted, including a red, white and green sign with Dax's name in bright lights.

Miller said her heart was warmed by all the work the community put into the decorations, and she was overjoyed to see Dax out with the family amid all the people helping to decorate.

I sobbed like a baby, but was overjoyed at the show of support for this family
--Cindy Miller, iReporter. "I sobbed like a baby, but was overjoyed at the show of support for this family who may not have their baby here at Christmastime. It's unusual to see Christmas lights up so early, but this year, there's a good reason."

Hurtgen says she's been surprised by how Decorate for Dax has taken off. Submissions have come from all over the United States and in far-flung countries like Australia and Germany.

"I don't know how the word is getting out," Hurtgen said.

Hurtgen added that one woman even wrote in to say that her husband, stationed in Afghanistan, was working with fellow troops to photograph a lights display for Dax.

Some of the colorful and bright displays she's seen include big signs with Dax's name on them and holiday-themed shapes and figurines. Other displays are more humble, like a message from another boy in a hospital and a makeshift tribute inside a tiny apartment.

"It doesn't have to be big, just your way of showing support."

The Lockes aren't the only family hosting an early Christmas. Diana Biorkman of South Lyon, Michigan, told CNN affiliate WDIV that her son, Noah, is dying of a Stage 4 neuroblastoma, which is a type of cancer that forms in nerve tissue.

Noah loves opening mail, so the family asked people to send him a Christmas card. Word got out, and he started getting gifts and cards from strangers. The family recently picked up a carload of mail and toys. Detroit Tigers baseball player Brandon Inge even sent a card and stopped over for a "play date" that included building a snow fort with Noah.

Hurtgen says the silent show of support works well for their community because Dax needs his rest and the family needs their privacy.

Perhaps, she said, people will see this odd display of early lights and wonder what is going on. Maybe they'll also pause for a moment to think about Dax and about what they can do to help. The family is asking people to make donations to St. Jude.

"That's what Christmas is about, giving and not needing to get in return."

Everyone is holding out hopes Dax will make it to Christmas.

"Christmas would be a miracle. We're praying for a big miracle."

Sunday, November 1, 2009

Share your H1N1 advice, stories, and plans

It might be helpful for us to share our H1N1 stories, plans, and advice as the virus is spreading, and our chances of encountering it are increasing. Please feel free to post your comments below.

My 10 year old has just been diagnosed with H1N1. We have him secluded in his bedroom, but this has not been difficult to enforce as he is too sick to even get out of bed. We are caring for him while keeping our other son who has special needs as far away from him as possible. Windows are open, hands are washed (and washed again), telephones, door handles, bathrooms and just about every other surface in the house are continuously wiped with alcohol.

The H1N1 vaccine was not available to us in Massachusetts. Clinics planned in our town had to be canceled because the vaccines were never received. We're on waiting lists. But for our family, it's too late. The virus is already here.

Our healthy 10 year old is very sick, a high persistent fever has us on guard and watching him very closely. I try not to think of what could happen to him or our other son should he contract the virus. I work to stay in the present moment. I remind myself that today our 10 year old is holding his own against the virus. Today our other son is not showing any signs of it. Today we are coping. And should this change, I remind myself that the Lord will be right there beside us as we make our way through.

PRAYER: Lord, we know that You are The Great Physician. We ask that Your peace be with all who are suffering from illness this night. We ask You to provide the doctors, nurses, and family members who are caring for the sick, the wisdom and grace to minister according to Your will. We especially thank You for holding those who are alone in their suffering and sickness, and know that You will lighten their darkness this night. Jesus, we trust in You. AMEN.