Loving and living with disabled siblings

People are often asking me, ‘What is it like to have siblings with disabilities? How has my life been different to those of others?’ I suppose it has been rather different and unusual, but it is perfectly regular to me. I’ve always had Johan, my brother, with severe intellectual and minor physical disabilities since he is older than me. I guess ‘normal’ kids don’t have to take their big brother to the toilet, stop him from eating hand sanitiser, or hold his hand so he doesn’t get run over by a car. These are all irregular things for most people, but it’s been ingrained in my brain. Here are some more things that I am used to because of my brother’s needs.

The hold music for the NDIS. The knock of the postman delivering seven boxes of adult-sized nappies. Sleepovers at friend’s houses when Johan had an operation in Melbourne. The best hugs anyone could give. Laughing with Johan at his favourite movies, and knowing them off by heart. Broken government systems and people trying to help. End-of-year Special School Christmas Performances. Hospitals and waiting rooms, speech therapists and physiotherapists. Doing all the kids’ chores.

Appointment after appointment, and I know Mum and Dad try to have enough time for me. But who can say what is enough time? I know they love me, but it always felt as though I was not the first priority in the family hierarchy.

The thing that makes me most sad is “What if?” What if Johan was born differently? Would my lonely younger years have been filled with little siblings to quarrel with, to run around the churchyard with, to love, and to have the normal sibling experience? ‘Rules’ is a book by Cynthia Lord about a girl, Catherine, whose brother David has autism. This book has been on my shelf for years, and this quote never fails to make me cry: “Sometimes I wish someone would invent a pill so David’d wake up one morning without autism, like someone waking from a long coma, and he’d say, “Jeez, Catherine, where have I been?”

The ‘what if’ way of thinking has only ever made people sadder and more frustrated. It leads to the idea that “If only this had happened, then my life would be perfect.” What an outright lie! The world is, by nature, sinful. No matter what alternate universe theory we have, the truth of the matter is that God has put me in this life, body, and universe, and there is nothing I can do to change that. Jesus says to love one another. Loving your neighbour as yourself is at the heart of Christian living. Who are my closest neighbours? My parents, whom I am commanded to honour and cherish. But also my brothers, whether they have special needs or not. I still have to love and serve them.

Living with disabled siblings is difficult. It is part of my hardship story. But I have to love them, I really have no choice. I’ve had to learn to be grateful for what God has given me. I am not perfect, and I’m always grumbling like the Israelites in the wilderness. Yet, contentment is something to fight for. I am grateful for my life and for God’s gifts. I am grateful for the cheeky blond baby I get to make laugh every morning and the little grinning boy in my memory who will soon be 18. They are broken in the world’s eyes, but the Lord made them. They are fearfully and wonderfully made.

Loving disabled people is difficult. All the practical things get in the way. Why would you love someone who takes up so much of your precious time just going to the bathroom? I’ve found the more you get to know special needs kids, the happier they make you. Kids with Downs Syndrome are some of the smiliest I’ve ever met. It honestly breaks my heart to hear the abortion statistics around disabled children. Over 90% of babies found to have Downs Syndrome are aborted because of in-utero genetic testing. When Mum found out about Ezra, they were offered a whole lot of testing because of Johan’s condition. The doctors made it seem as though if Baby had a defect, they wouldn’t want it.

I think back on all the good things about having brothers with special needs. Every smile, every hug, every time Johan and I enjoyed being together. Every time Ezra’s eyes light up when I walk into a room. All the times Johan has gone looking for me when I am away. And I think, ‘How could someone want to kill a baby like Joh?’ Now, I am only young, and may not understand every nuance of pregnancy yet. But I do know this from my own experience: Johan and Ezra are in no way less deserving of love than I. They are no lesser beings. They are created in the image of God. God made them so unique, they are the only two in the world with their specific genetic condition!

The question most asked when you learn your child is disabled is, “How will we cope?” Not “How can we change to best love this child?” or “How can we care for our baby?” but how will I be able to deal with another child who has so many additional needs? This thinking might be selfish, but it is the reality of many expecting parents. Fellow Christians, pray for pregnant women who face the unknown. Pray for those who have disabled children. We cannot view disabled children as burdens. They are blessings from above as much as the next able-bodied baby.

When I worry about Johan’s salvation, I think about what the Bible says about baptism. All three Modra kids have been saved through the waters of Holy Baptism. For “Whoever believes and is baptised will be saved, but whoever does not believe will be condemned” – Mark 16:16. Now comes the doubt, the question of faith. Johan has always been happy in church. Perhaps it is the routine, seeing people he loves, or maybe the knowledge that he is in the presence of our Maker that fills him with smiles on a Sunday morning. These facts have done little to stop the doubt, the small voice that says, “What if Joh is going to hell?” – the little voice that brings tears to my eyes. I found comfort in a rap song, of all things. FLAME, the Christian rapper, says in his song, ‘Mark Them’: “Babies can definitely have faith, Man it’s all over the Psalms; Psalms 22, Psalms 71, Trusted in God while he’s nursing on moms.” If a baby can have faith, then a boy with the estimated intellect of an 18-month-old can have faith. I can find comfort in this and trust that my brothers have been granted forgiveness of sins, rescued from death and the devil, and given eternal salvation.

Finally, I find comfort in the Lord. Think of all the great things He has done for you, for me! From knitting me together in my mother’s womb, blessing me with a loving family, being baptised in His name most holy, receiving catechesis and communion, the availability of His Word, my daily bread, the forgiveness of my sins, and taking me to be with Him in heaven when my time on this Earth is over. Hymns and songs of praise are here to remind us of God’s promises. These hymns remind me that God will never forsake me. His steadfast love endures forever. Jesus healed the blind, deaf, and lame. He has also saved my brothers. There is true comfort in knowing that they will be with me and Him in heaven.

Thank you for reading my story. I wish you all true joy and peace in God the Father, Son and Holy Ghost.

Ruby Modra is a 16-year-old living in Burnie, Tasmania.

She enjoys Christian fellowship, hymns, embroidery, and creating her Lutheran podcast for children, Ready for Church Podcast.

Hear more about her mum’s story raising Johan, and now Ezra, on the Here She Stands Podcast. ‘Tara’s story: Raising children with severe disabilities.’ available at: https://hereshestandspodcast.alitu.com