Loving God. Loving our neighbor.

Joyfully Lifting Malformed Hands in Worship

There are many reasons I love being a Christian, but right up there is being able to learn from others how to think in mature, biblical ways. Recently my friends Ewan and Rachel welcomed a new baby boy into their family, and immediately experienced a shock as they realized he had a significant physical malformation. They soon sent a letter to their church (Grace Fellowship Church Don Mills) to introduce their son and tell about his condition. I received their permission to post it here and do so in order to provide a model of truly, distinctly, inspiringly Christian thinking. What follows is from Ewan and Rachel Goligher. I hope it blesses you as it blessed me.

Dear brothers and sisters,

Thank you to everyone for the warm wishes and congratulationsfollowing our son Ewan’s birth last week. It’s been a joyful and happy time and we are grateful to share this joy with our wonderful church community.

Last Thursday morning shortly after Ewan was born, the nurse called me over to see him. She pointed to his tiny left hand and foot; I was stunned to see that they had not developed properly. Much of his left hand was missing and his little thumb was oversized and partially fused to a single adjacent finger. Similarly, some of his left foot was missing, he had a single large toe and his ankle appeared twisted and bent inward. These congenital anomalies, as they are called, had developed during the pregnancy but were not seen on ultrasound. We brought him over to Rachel and showed her his little foot and hand. As Rachel and I looked at him and then at each other, tears welling up in our eyes, we quickly realized that the road ahead for little Ewan was going to be unexpectedly difficult.

A torrent of conflicting emotion followed, unlike any prior experience for either of us. We were overjoyed by his arrival and deeply shocked and dismayed by these anomalies. Even as we burst with happiness at the birth of our new son, a sudden, unexpected, and weighty sense of tragedy hung heavily on our hearts. Many tears followed, not for ourselves, but for our little boy who even before his birth was already experiencing the terrible consequences of life in a fallen, broken world. It was painful to tell our other children about this, excited as they were to meet their brother, and hard to tell family and friends who were ready to celebrate his arrival and unprepared for this difficult news. A day of good news became a hard day of breaking difficult news.

Ewan has been examined by several pediatricians and undergone a number of investigations. To this point, no underlying condition responsible for these anomalies has been identified; this is good news, as it’s therefore less likely that there are other health problems that he will face. We are thankful to live in an era and in a part of the world where skilled surgeons and therapists can significantly enhance functional capacity and quality of life for children like Ewan. He has a long road of tests and treatments ahead and it’s uncertain just how disabled he will be as a consequence of these malformations. Certainly, he will not be able to hide his hand from the world, and it will not be long before Ewan realizes that he’s visibly different from other boys and girls his age.

By God’s grace we are doing OK. We’ve received tremendous love and spiritual support from our Pastors and some of you already. Right now, life is pretty typical for Ewan: he eats, cries, and sleeps as much (or as little) as any other newborn baby. Our expectations for what life will be like for him have adjusted remarkably quickly and many of you have been able to reassure us with stories of children in similar situations who have flourished. The gospel that we as a church celebrate week by week has proven to be a powerful source of hope and grace. We know that God has intentionally and specifically ordained this painful path as a ‘necessary trial’ for Ewan and for us. Yet we are wholly confident that God is acting out of love for us because he has demonstrated his unfathomable love at the cross. Somehow the God of steadfast love and faithfulness who promises to give ‘a beautiful headdress instead of ashes, the oil of gladness instead of mourning’ will be faithful to keep that promise. We’ve been meditating on the truth and power of the Christian hope for a new resurrection body in 1 Corinthians 15: “What is sown is perishable, what is raised is imperishable. It is sown in dishonor, it is raised in glory. It is sown in weakness, it is raised in power.” The thought that Ewan might one day stand in glory with five glorious fingers and toes on his left hand and foot working in perfect glorious order fills us with joy and hope—so he needs the gospel.

Until that day we will need grace, and we will need you. We are writing to share this news so that you are not taken by surprise when you see him and to relieve any awkwardness that can arise when we encounter people (especially babies) with visible deformities or disabilities. We want you to feel free to say something or to say nothing, to ask us how we are doing or to ignore the problem altogether. We want you to be able to celebrate his birth with us (he is a beautiful little boy) and we welcome you to mourn and grieve with us. Despite our sadness, we are overwhelmingly happy—‘sorrowful yet always rejoicing’. Ewan will flourish to the extent that those around him help him to see that his value, significance, and meaning have nothing to with his abilities or disabilities. We want his identity and sense of self to be shaped by who he is before God, not by what he looks like or can’t do in human eyes. As a church family, many of you will help to look after him and care for him to varying degrees. We want you to know how deeply grateful we are to be a part of a gospel-centred, hope-filled, loving community. Your prayers, love, support, and kindness will make a massive difference in his life and ours. Without you all, this would be far more difficult to face.

Please pray for us. Pray that we will have wisdom to make wise choices at this early stage so that he will have every opportunity to function physically at the highest possible level. Pray for the doctors and therapists involved in his care (we will be happy to keep you posted on our progress). Pray for Jacquie, Shannon, and Ian as they love and care for him every day at home (after some initial tears, they’ve come to terms with his malformed hand and foot very quickly). And especially pray for Ewan. Pray that as he grows into a boy and a young man that his identity will not be shaped by his disability; pray that he will have wisdom and grace to know how to interact with others who may not know how to respond to his deformity and disability; pray that he will be able to walk and even run, if God wills. Most of all, pray that he will have a soft and tender heart toward his heavenly Father and that the Father will grant him the gift of faith and spiritual eyesight so that he will be able to enter into the hope of the gospel.

At root, the problem of suffering is a problem of worship. How do we lift our hands to worship the God who sovereignly brings pain into our lives? All of us have faced that challenge to varying degrees. Though I’ve borne witness to a lot of suffering in my work and reflected on these issues considerably, I often wondered whether I’d be able to worship God with all my heart if He brought physical illness and ailment into our lives. Would we still be ‘singing when the evening comes?’ Rachel and I can testify that this past weekend we discovered that the answer was ‘yes’ for both of us; God’s goodness still seems clear and His presence seems near. Please pray that our little son will someday joyfully lift his hands, formed and malformed, in heartfelt worship to the King who in love and mysterious providence saw fit to have him walk this path—even when he can’t know exactly why it had to be so.

Yours in Christ,

Ewan and Rachel Goligher

Joyfully Lifting Malformed Hands in Worship