This is the title Lionel and Monique Héron gave to a talk in which they recount their experience. Through their story and that of their six children—among them Thibaut, whom they learned one June day had contracted a devastating muscle disease—we learn to live our lives as a "pilgrimage": each day brings its own milestone and its own grace.
Lionel
Until May 1980, we were a happy Christian family without a story to tell. One daughter and five sons were our joy. The youngest, Thibaut, was beautiful and always smiling, blessed with what appeared to be perfect physical health. He made us all happy.
But we noticed he was developing more slowly than his brothers. He didn't run freely, struggled to jump, and avoided climbing stairs.
Monique
I consulted many doctors. They suggested it was only his feet—slightly flat—and his knees, which converged a little.
When Thibaut turned six, I took him to another pediatrician. After two blood tests came the horrifying news: Thibaut had a terrible congenital muscle disease, a myopathy. I learned that by age ten he would no longer be able to walk, and that his muscles would be progressively destroyed.
It was like a bomb exploding. I told no one. My older boys were in the middle of exams, and Lionel traveled constantly.
Thibaut was about to lose, before he had even fully developed them, many of the gifts God had given him. He would never be an athlete, as my father had been. And his voice, which might have been beautifully developed, what would it become without normal breathing? It meant the end of his joy in living, of that open and untroubled way he had of talking with his friends.
Thibaut... in a wheelchair, and then...? I went to a professor who specialized in myopathies. It was the final confirmation: yes, Thibaut had Duchenne muscular dystrophy, and in his case the disease was progressing rapidly.
What can I say of the silent rage that choked me as I left his office? He had said something like this: "It's so simple today to prevent these accidents. When a mother knows she's a carrier of the gene—and there are increasingly reliable tests to prove it—and she's pregnant with a boy, we can perform 'therapeutic' abortion." What? We had five children we were proud of: the eldest was preparing to become a doctor, the twins were growing up beautifully together, and Dominique, nearly ten, was so serious, so mature, and at the same time so funny. He wanted me to kill them. Doctor? What a massacre! And Benedicte, our daughter—why should she have been spared? Wouldn't she later be able to pass on the disease? And Thibaut... certainly. What pressure, Doctor, would you have put on me, when during the first four months of a difficult pregnancy I had been bedridden with all five of the other children at home? What guilt would you have heaped on me, had you known, when I was carrying him?
In any case, according to you, from now on Thibaut's place is in a specialized institution, isn't it, Doctor? That's the only place where he can be properly cared for. Strange—Thibaut is about to lose all his muscles, you're powerless to cure him, and on top of that you want to separate him from everyone who loves him! And there are many around him—more than forty aunts and uncles, nearly a hundred cousins, all of whom feel very close to us.
I think that anger helped me greatly.
Thibaut was still there, the same today as yesterday, still deeply loved and entrusted to us by God so we might raise him toward Him; Thibaut, to whom, like us, eternal life had been promised. I prayed. And soon I felt able to tell Lionel.
Lionel
After carrying this alone for more than a month, Monique finally shared her burden with me, and she did so with great calm. It was a marvel and a grace! While I was reeling, she was able to say these wonderful words: "Dear, but this doesn't change anything."
Doesn't change anything? From one perspective it was true—life would go on. Nothing would change, yet at the same time everything would change. Many things that had seemed important would become secondary. Above all, I wanted to fight for Thibaut to be healed. Wouldn't an infinitely good and all-powerful God heal him soon if we asked with force?
Monique had reacted with a mother's grace: "This doesn't change anything." My reaction was completely different, perhaps more masculine. I needed to act. I called upon God as witness to what was happening and begged Him to come to our aid. A few minutes later came the idea: I would walk to Lourdes from Versailles, where we lived.
On the morning of August 2, I set out. The first day was atrocious: after thirty kilometers, breathless and aching everywhere, I collapsed in front of the convent of the "Orantes of Bonnelles." The Mother Superior was worried: "Do you have heart trouble?" and added, "You know, the Holy Virgin is also at Chartres!"
After two or three days my body adjusted, and I found a steady rhythm—part contemplation and prayer, part regular physical effort. One thing struck me: the place the Eucharist holds for someone who walks. It is food, source, breath. And it was then that the Lord, with tenderness, often made it so that those who desire Him meet Him.
One day I had to take to the road without having been able to attend morning Mass. That afternoon, in another village, I entered a church. After a moment of prayer and rest, I left, glancing at the schedule of services for that week: it said there would be a Mass on Wednesday, August 6, at 3:30 p.m. It was 3:29... These are the smiles along the way, the "wink of God," as we say in our family.
Soon I began to understand the deeper meaning of my pilgrimage. This walk was a long, slow prayer that engaged my whole body—a prayer entrusting Thibaut to God, and us with him. My initial brutal reaction became a search for God. In one sense, I wanted to ask Him for an explanation. He answered silently: He was there each day, walking with me, and He was pleased with what I was doing. It was exactly what our life with Thibaut should teach us: "to live day by day." This walk became the symbol of what our life should be. If you go forward, if you have faith, you'll see you're not alone. Each day has its milestone, each day a friend to share it with, each day its bread, its Living Bread.
Monique reached me at Lourdes with Thibaut and Dominique. Thibaut was not healed. Yet the pilgrimage had brought us such joy and such unity that a few years later the whole family took to the road toward a shrine. There we discovered the joy of sharing Thibaut with one another and with those we met.
Monique
So, day after day, we live hope in the everyday. It is a total trust—paradoxical to some—in God's fatherhood, who loves Thibaut infinitely more than we do and can only will his happiness. With Thibaut, the future is uncertain, but we are at peace. We refuse to be frightened by a dreadful "after." God gives us the grace of peace to bear the real burdens of every day. Hope in the everyday is also sharing in the everyday. Our neighbors, who have become friends, welcome Thibaut often with great simplicity. We sometimes fear he will take advantage, but their welcome is so affectionate! In our apartment building he has at least half a dozen "moms" ready to receive him!
Hope in the everyday is also shown in taking to the road again from time to time, where God becomes so close to us, and in making ourselves available to draw near to Him once more. In the spring of 1984 it was Medjugorje.
Lionel
We have received so many graces, so many blessings, but this doesn't lead us to say that the disease itself is a grace. A child's illness is something particularly revolting. To struggle against this evil, against this disorder of nature that is disease, to lessen its suffering—this is a true duty for us. That's why we belong to the French Association Against Myopathies (A.F.M).
Monique
We are indeed in the right position to know the weight of this disease and how difficult and complicated life is for isolated families.
Today, at thirteen, Thibaut can no longer use his legs and has very little use of his arms. He has lost half his lung capacity and his spine is deformed. He weighs fifty kilos and often needs to be carried. I care for him all day. Thibaut must do his daily treatments: warm baths, physiotherapy, respiratory support. He can follow his schooling normally, but he needs to be transported to class. He needs heavy equipment: the electric wheelchair, the desk where he must remain standing, and others. I help him with his work. At night he cannot roll over in bed and often calls us. Lionel and I have taken to waking in turns to answer him. We've equipped the car to fit his wheelchair inside. Soon we'll be leaving our apartment for a ground-floor place. And all the administrative paperwork!
Despite the complications, Thibaut is happy when we set out toward places where we will find spiritual resources, beauty, and friendship. He prays with great naturalness. "Let us go up toward the Lord," he said once when we took the path that climbs toward Medjugorje. In the evening it's he who gathers us in his room for prayer, and when we have friends visiting, he invites them too.
Lionel
We can only accompany our child in his prayer of thanksgiving: "Thank you, Lord, for this beautiful life you have given us." We don't thank God for Thibaut's disease, but because—if it is clear that God does not send suffering—it is clear that He permits, or rather accomplishes Himself, the transfiguration of every suffering that is accepted and offered. Is it not a true joy and a privilege to participate, modestly but truly, in the central mystery of our faith—the death and resurrection of Christ?
- Lionel and Monique, 1992 - from O. et L. n. 82