Years of Heartache
When my wife and I married, we couldn’t wait to start a family, but month after month, we were saddened to find that Johanna hadn’t fallen pregnant. After a year or so, we visited a doctor who ordered some tests. Johanna had an operation to check and it confirmed she had medical issues which would make falling pregnant very difficult. I was also diagnosed with sub-fertility.
Although we lived in Darwin, we crossed the continent at least once or twice a year to visit my eye doctor in Melbourne. Since his clinic was just across the road from St. Patrick’s Cathedral, we would always go there to pray. As we knelt in front of a statue of Our Lady, we prayed for God’s will to be done, but we prayed, with hope, that His will would be for us to have a child.
After many years of trying different treatments, Johanna finally fell pregnant with Gabriela. We were overjoyed and gave thanks to the Lord for answering our prayers after eight years of heartache. On our next visit to Melbourne, we lit a candle in front of Our Lady’s statue and prayed in heartfelt thanksgiving for her intercession.
When Gabriela was born in perfect health, we delighted in God’s generous blessings. Then at four months, we were shocked when she had a convulsion during a swimming lesson. Although the doctors initially thought it was just a febrile convulsion, Gabriela kept having seizures whenever she had the slightest cold. Eventually, she was diagnosed with Dravet’s syndrome—a type of Epilepsy with seizures which are difficult to control. We should have been shattered when we received the diagnosis, because the possibility of receiving a severe brain injury was quite high, but we felt that the hand of God was never far from us, even in this moment. As she grew, she began to run, dance, sing and play, snuggling up to us to say, “I love you.” Her laughter as she told me, “Daddy you’re funny,” still resounds in my ears.
We had hoped that Gabriela would not be an only child, but we hadn’t fallen pregnant naturally. So we returned to the doctor to seek the same fertility treatment which helped us conceive Gabriela. To our surprise, we discovered at the appointment that God had already blessed us. We didn’t need to start the treatment since Johanna was already pregnant with Sofia! We call Sofia our ‘miracle baby’.
In the midst of our trials, we felt so blessed to have conceived her without any intervention. After reading Pope John Paul II’s beautiful explanation of the unitive and procreative purposes of marriage in his Theology of the Body, we had taken our wedding vows seriously and been open to the life that God wished for our marriage. However, Gabriela and Sofia were the only children that God chose for us to conceive.
Since Gabriela kept bouncing back from her seizures, we were hopeful. But when she was 3 ½, while we were still in the midst of the excitement and hard work of cherishing our new baby, Gabriela went down with gastroenteritis. We were accustomed to her suffering seizures every time she became ill, but this time the seizures continued for four days. Placed in a medically induced coma in intensive care, we weren’t sure whether she’d make it through. We were in shock, but God’s love sustained us through the long hours at the hospital and the sadness at seeing our bright, beautiful child deteriorating. We saw every moment, each day as a blessing.
If we could only have her with us for another year or two, then this moment was good enough and we would surround her with our love. Supported by prayer, she surprised her doctors by her will to survive, but the ongoing seizures had caused a severe brain injury which would eliminate her ability to walk, talk or eat, so she ended up spending 3 months in hospital.
The next challenge was bringing her home in a wheelchair, totally dependent on us for everything, while we had the baby to care for as well. Gabriela cried all the time, day and night, but when she received medication to ease her constant crying, she would sleep all the time. We weren’t sure what to do with this child that was either crying or sleeping all the time. It’s hard to see an innocent child suffering so much when she’d done nothing wrong to anyone.
How was it possible? Why her? And why us? We were on an emotional roller coaster, seeing her so unwell and not being able to help her. So, we entrusted her to God who answered our prayers with love. We felt Him saying, “I am your Father. I am the Lord that leads your life.” Although it is was well beyond us, He gave us the strength to travel this journey with her.
We felt assured that if God wanted this from us, He would stay and fight alongside us. It was difficult, but having this child with a disability enabled us to rely on one another and move our focus from our own problems and weaknesses, so we could put all our energy into this child who needed us so much. We could never have done it without each other and the support of our community. When we made the big move to Brisbane to have access to the therapies that have helped Gabriela, we were supported by our Neo- Catechumenal community.
Their help, and the fundraising support of the wider Catholic community was critical to the challenges that lay ahead. Gabriela has 100% reliance on other people to be able to complete tasks and cannot be left alone. She is unable to brush her hair or teeth, feed herself or go to the bathroom. She is non-verbal and unable to walk. Johanna and I are grateful that we get some assistance with her care and therapies through the National Disability Insurance Scheme (NDIS). Besides the therapies, Gabriela needed operations to realign her hips. When she was seven, heart failure after an operation left her battling for her life again. The doctors told us to get our family to come down to say goodbye.
We were heartbroken. Once again, we weren’t ready to give up our long-awaited daughter. I asked St John Paul II, St Mary of the Cross (MacKillop) and Our Lady for their intercession. It was a moment of intense and unceasing prayer—praying for God’s will to be done, but also praying for a miracle. Through God’s grace, He had sent us messengers in the form of our brothers and sisters in our Neo-catechumenal community. It was like Isaiah 50:4 “Lord you have given me a disciple’s tongue, so that I may bring to the wearied a word of relief”. Our brothers and sisters in Christ prayed the Liturgy of the Hours and the Rosary with us. As we commended her to God, we also prayed with trust and hope.
We had been told at the start of that day that Gabriela’s life was ‘hour by hour’. Evening Prayer that night was poignantly accompanied by the short reading from Job 1:21 “the Lord gives and the Lord takes away”. I was struck by the meaning of those words right in that moment, asking God to have mercy on us and to prepare our hearts. Our priest joined us at the hospital to anoint her and pray with us by her bedside.
He advised us to pray, each hour, a word that the Israelites had prayed in the desert—”Dayenu”. This word, linked with the Passover and the History of Salvation, says ‘God, you are to be praised for everything you do…if you had only taken us out of Egypt, it would have been good enough…if you had only brought us through the sea, it would have been good enough’. This is the song that I sing at the end of the Shalom World TV interview and it was a powerful word for us in that most difficult moment of our lives. About 3 AM, she suddenly began to improve and continued her recovery until she was well enough to leave hospital. I believe it was a miracle that Gabriela survived. None of the medical staff in the intensive care unit had expected her to live.
Despite her disabilities, Gabriela loves life. She delights in joining her friends at a Special School with a great sense of community, where she enjoys activities such as painting and switching—by lifting her right hand to press a switch, turn pages on an e-book on iPad. She communicates with a blink and slight nod of the head for ‘yes’, and looking away for ‘no’. Specially structured questions assist this process.
Gabriela revels in activities with her sister, cousins and friends. Her favorite things include music, movies, musical theatre, bright lights, colour and food. She can eat thickened soups, icecream, sauces and chocolate. She really enjoys going out into the sun and visiting the herb garden at the Botanic Gardens where she can smell different scented plants. Gabriela loves to dance and has been part of Superstars, a mainstream dance group, for over six years. They help her participate by moving her arms and moving her around. The other girls dance around her to include her in the dance routines.
A Prayer Giant
Gabriela knows that God loves her and helps her with the many crosses and difficulties she faces. One of the biggest highlights of her week is going to Mass. She adores receiving Holy Communion and participating in the music at children’s liturgy and in our prayer at home, with her sister helping her play percussion instruments, like the drums or xylophone.
Prayer is a big part of Gabriela’s life. She has a photo of St John Paul II at the end of her bed, alongside icons and a colourful traditional cross from El Salvador. Gabriela knows many prayers off by heart, such as the Lord’s prayer and the Shema (Deuteronomy 6:4-10) which we recite with her before she sleeps and when she wakes. Even though she doesn’t speak, her eyes light up with acknowledgment.
If a family is struggling with disability, they can still praise God, and keep walking towards Him. Because of all we’ve been through, we’ve been able to counsel and guide couples having problems in their marriage. Despite our struggles, we didn’t abandon God. Daily prayer at home and with our church community has helped us to put God first and trust that there is a purpose for everything in our lives.
Throughout our lives, there have been many crosses, but Jesus said, “Take up your Cross and come, follow me.” (Matthew 16:24) It’s been possible for me to see the difficulties in our life—such as Gabriela’s frustrations when her brain injury prevents her from doing things she used to do—as opportunities to carry the Cross.
We don’t know what God has planned for our future, for her or for us, but we can see each day as a blessing. I see Gabriela’s purpose in her connection with God. She is very aware of God in her life and her role as a messenger to witness God’s love for her. People are drawn to her, wanting to know more about her story and He continues to answer her prayers in profound ways.