A Life Worth Loving

One family's short time with their baby daughter changed their lives and the lives of those around them, because of the joy of Josephine.

By Joseph Pronechen

The man who made It’s a Wonderful Life captured an important truth when he said he wanted to show “that each … life touches so many other lives.”

That message hits home for the Ed and Claire Lampitt family.

Their daughter Josephine Rose was born on April 20, 2008. Everything seemed normal at first; then she experienced raspy breathing, which was diagnosed as severe reflux (something most children outgrow). But new symptoms (like poor weight gain) appeared. Doctors were puzzled. In December 2008, Josephine was finally diagnosed with Type II Gaucher (go-shay) disease, a rare, incurable metabolic disorder. An infant with Gaucher (more information at CGRF.org) lives an average of nine months.

Josephine returned to their Williamsburg, Va., home needing an oxygen pump, monitoring machine and tube feeding. On Feb. 16, 2009, she died peacefully with her parents holding her.

“If Josephine was going to live, it would have to be some sort of miracle,” Claire says. “But I stopped praying for a miracle when she was getting closer to death — and started praying she wouldn’t die alone. Thank you, God.”

The Lampitts do not gloss over their profound feelings of sorrow and loss. They did a lot of soul searching and questioning, and, of course, they miss their infant daughter’s giggles and smiles. But says Claire: “The way we work through it is to become stronger in our faith. Josephine and we are only separated by time, and we will be reunited. That helps us.”

She reflects: “In a lot of ways, I realized that we were at the mercy of God’s will. At some point you stop asking for what you want. I asked God for the grace that I could accept whatever his will was. My understanding is not adequate. We humans don’t have the knowledge and wisdom God has.”

From the beginning, faith was fundamental. “We truly learned to have faith,” Ed explains. “A lot of people talk about it. But if you really have faith, a lot of your worries go away. I learned that if you truly let go, you find peace. Certainly, we wish we had Josephine, but it helped me learn this at a relatively young age. It was hard learning, but now it’s second nature to us.”

Putting faith in action meant the Lampitts always wanted to seek out the Church’s teachings and brought their questions to Father Peter Creed, their pastor at St. Olaf Catholic Church in Williamsburg.

“They’re very deep in their faith,” Father Creed says of the Lampitts. “They have this absolute, total respect for every single person.”

This trait also impresses Ed’s younger brother, Father Robert Lampitt at St. Matthew Church in Champaign, Ill. Niece Josephine’s baptism was the first ever for her uncle. And her funeral, his second.

They wanted another child, realizing the chance of having another baby with Gaucher was 25%. They wondered how son Rudy, 3 when his baby sister died, would be affected.

Claire recalls being in church and hearing in the reading: Be not afraid. She realized Jesus “didn’t say that to people who had nothing to fear, but to people who had everything to fear. He was saying that to me at the moment.”

A lot of people think they have faith, but the proof is being put to the test, Ed points out. “That’s where it really shines — when you are in the position to be afraid.”

“We had to let go,” says Claire, “decide to have another child who could have this disease, and just let God be in control.”

They considered: What if they never had Josephine? “We only had 10 months, but what is the value of a human life?” says Claire. “We believe it is a life worth living, a life worth loving.”

Ed explains that when they opened their hearts to have another child, it wasn’t in the way people usually think, as if they were in charge of creating the new life. It was rather deciding to try to have a child, hope, and know only God is in charge.

Soon the Lampitts were expecting Christopher Joseph.

“They (the doctors) think what we did was reckless, but that was our plan from day one,” Claire says. “We were going to let go, not live in fear, because whatever happens is God’s will. That’s not to say we weren’t relieved when we found out Christopher would be healthy.”

In Illinois, Father Lampitt has “been edified time and time again” by his brother and sister-in-law’s example.

He further observes: “When you’re open … God blesses that generosity and is going to help you through all the struggles and crosses that come. God will bring great things out of those sorrows and tragedies.”

Everyone prayed for a miracle, but Father Lampitt remembers how their mother pointed out the real miracle of the story: “People who never prayed before were praying for Josephine. People were being brought to God through her.”

Back at St. Olaf’s, parishioners always included Josephine and the Lampitts in the Prayers of the Faithful. And parishioner Diane Moran ended up becoming good friends with Claire.

Moran believes she herself also benefited from that friendship and example when recently her own daughter was in a pregnancy where both mother and baby were in jeopardy.

“It was nice to know the community was praying of us and that Claire would be able to relate,” Moran says. “I’m sure she would be a great advocate for people in crisis or for mothers facing the loss of a child.”

Lives were also touched around Fond du Lac, Wis. There, friends Francis and Mary Kate McCormack provided support from a distance.

Routinely, the McCormacks’ nightly family prayers included Ed, Claire, Josephine and Rudy. Francis adds: “Speaking for both of us and particularly for myself, we had in our hearts that any minor challenges we had as parents and as individuals we offered up for the Lampitt family, Josephine in particular.”

He reflects: “I think it’s primarily through offering things up that our own spirituality deepens. How Ed and Claire met the challenge set a wonderful example that deepened our own faith.”

As an emergency-room physician, Francis McCormack is ringside to much human suffering and tragedy. But he finds the Lampitts’ example shows the meaning, hope and light at the end of the tunnel.

Although Josephine’s life was short, McCormack says, “she was so full of blessings. The assumption is: what a terrible thing; but the reality is: It’s blessings that one could never anticipate. That’s not to candy-coat the sufferings.”

He keeps a framed picture of Josephine and Rudy at his emergency department workstation. “It keeps me centered as I go through what invariably turns out to be a grinding 24 hours and reminds me why I’m there. … It gives me the perspective to be more conscious, bring in more than just the science, and try to be spiritually engaging to patients that I’m given the privilege to direct on a day-to-day basis.”

In Virginia, the Lampitts want to inspire people who have doubts or are thinking about an abortion.

“From day one, we can honestly say, we were going down a certain path and chose life,” Ed says. “Whether that life would have a disease or not was not for us to figure as part of the plan. We’ve demonstrated in our words and what we’ve done we are serious about this.”

He’s already been able to tell some who have had scares in their pregnancies to have the child. “That’s the time you don’t give up. That’s the time you demonstrate your faith.”

When outsiders ask if the Lampitts would do this again and why, there’s no hesitation.

“Josephine’s life was not about suffering,” Claire explains. “She knew love from the very moment she was born until the moment she died.”

Concludes Ed: “There’s no question the whole experience was a blessing. Our lives are richer and fuller for it. God has a plan.”

That plan includes Rudy, who turns 6 in June, and Christopher Joseph, healthy at 14 months. All the Lampitts, including Josephine in heaven, continue to show “that each … life touches so many other lives.”

Register staff writer Joseph Pronechen is based in Trumbull, Connecticut.