Caring often begins with unexpected turns in life, reshaping a family’s journey in ways they could never have planned. For Steve and Ann, that turning point came with the birth of their son Joel, who was born with Down’s Syndrome and later diagnosed with a rare liver condition. What followed was a lifelong commitment to his care, filled with challenges, but also with immeasurable blessings. Through it all, they discovered that caring is not simply about meeting needs; it is about love, sacrifice, and finding God’s strength and presence in the midst of every circumstance.
In this latest Guest post, Steve tells their story…
An unexpected turn of events can suddenly change the course of our lives. That was the case with the birth of our fourth child. Joel was born with Down’s Syndrome. Having a child is always an emotional event, the wonder of a new-born baby, the joy of seeing this new life for the first time, wondering what their future holds, how they will grow up, and so many more questions fill the thoughts. But when a child is born with a learning disability, many more questions seem to flood in to an overwhelming extent. Will our lives ever be quite the same? Will he always be like a child? Will we be caring for the rest of our lives?
In reality, none of us knows what the future holds. As we adjusted to the new dynamic in our young family, within six weeks of Joel’s birth things took on yet another turn. His complexion was very yellow and after several tests he was diagnosed with a rare genetic liver disease which could also be present in the other children. Amazingly, after blood tests, they were found to be healthy, but Joel was in and out of hospital for most of his childhood and on and off into his adult life as well. He had to have nutritional supplements through a peg ( a tube in his stomach) for the rest of his life.
What followed was caring for Joel long after all the other children had grown up, got married and had children of their own. It has not been an easy journey, and yet at the same time we can honestly say we wouldn’t change anything because through God’s help our lives have been all the more enriched. Without an awareness of God’s involvement, we’re not sure how we could have managed. Romans 8:28 states: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” This has been our experience right from the day of Joel’s birth. While I was at home processing these events and asking for God’s help, my wife was in her hospital bed and felt God clearly speak to her through the Bible:
9 “Which of you, if your son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake? 11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him! (Matthew 7-9-11)
Not only did she find comfort from this scripture but during the night a midwife came to visit her and reassure her of God’s love for her. No-one knew who this midwife was, but whoever she was, God knew Ann’s need at just the right time.
Joel has been a good gift! He has shaped our lives and many others. At the time of writing he is 36. It’s not always easy, but caring for someone puts life into its right context. All life is valuable. And in caring we touch something of the love of God for us. We have known the presence of God in profound ways during some of the most difficult times. We’ve seen miraculous healing when things seemed particularly bleak, and we’ve known God’s grace when healing has not happened, and we continue to support and care.
One of the most well-known verses in the bible (John 3:16) states that God loved the world so much that he would send his only son to die in our place. Caring has to do with denying yourself for the sake of someone else. In caring for a child that we love we get a tiny glimpse of God’s love for us.
We have learnt much through caring. There are many ways in which we can find God’s encouragement. In Matthew 25 Jesus says whenever we care for others it’s as though we are doing it for him. His Holy Spirit helps us and in Hebrews 4:16 we’re encouraged to approach God’s throne of Grace because he will help us in our time of need. And there have been so many other assurances of God’s love for us:
Because of the Lord’s great love we are not consumed, for his compassions never fail.23 They are new every morning; great is your faithfulness. (Lam 3:22-23).
Daily we have learnt to trust God for what the day might hold in store. I’m writing this as we have just come back from a last minute visit to the doctor because of a worsening infection around Joel’s peg site, but the result was that my wife saw the senior doctor in the team who moved things forward faster than we might otherwise have hoped. Knowing God goes ahead of us in all these things gives great comfort and peace.
Perhaps one closing thought. We have found it a privilege not only to care for Joel, but also to find that our experiences have helped us to be a comfort to others who are not so far down the journey. The apostle Paul assures us that this will be the case:
3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. (2 Cor 1:3-4)
Steve
About the Author
Steve is a devoted husband, father of 4, and long-term carer for his youngest son, Joel. Steve has walked the journey of faith and family through both challenges and blessings. His experience of raising Joel – born with Down’s Syndrome and a rare liver condition – has shaped much of his perspective on life, care, and God’s faithfulness. Steve serves as an Elder in his local church, and is passionate about encouraging others with the hope and comfort he has found in Christ and sharing lessons learned along the way.