An unexpected diagnosis
When I was pregnant with our eighth child, I read Alphonsus Ligouri’s small volume titled Uniformity with God’s Will. I can’t tell you anything of it now, but I came away with the mantra: “Thy will be done.” It’s a curious thing to hear God chuckling in your ear years later, but I believe I hear Him now!
When Albert was born, doctors immediately diagnosed him with Down Syndrome. More importantly, he was diagnosed with congenital heart disease. Within hours of birth, they transferred him to the Children’s Hospital, Westmead, leaving me alone in my small hospital. I was not present when Albert received an emergency Baptism that evening. The following day, they discharged me and I visited him in the PICU. Albert was lost in wires, cannulas, feeding and breathing tubes, tiny splints, and a beanie to hold it all together.
Grieving the life that wasn’t
“How are you coping?” This was the most popular question from people around us. It was a tiring, unanswerable question. We didn’t know how we were coping. Frankly, we didn’t even know what we were doing. Seven children born before were nothing like this. There is no chapter in the baby books to prepare you for this. All I knew was that my sick baby was a stranger to me. He had immense health issues that were also strange to me. And worst of all, he was not in my arms.
This was not the healthy baby I had been praying for in the last nine months. How could this be God’s will? I was numb. There were endless tears. I mourned for the health my boy didn’t have. The ‘congratulations’ I did not receive for my newborn grieved me. I was saddened by the necessary medical intervention. I felt God had abandoned me. My prayers were reduced to an angry “Why?”
One night Albert’s health was truly dire, and I did not even know what to pray for. Does one beg for a life to stay on earth when it could be filled with suffering, challenges, and heartache, or does one pray for death? All I could say was, “Thy will be done, and give me strength for that outcome.”
Relying on the intercession of others
Meanwhile, we begged everyone for their prayers for Albert. Many promised to pray and did. One beautiful seminarian – now a priest – used his opportunity in a papal audience to ask the Holy Father to pray for Albert! It was amazing to feel so many prayers surround us. And we needed them. We had nothing.
We were being swept along daily by the machinations of a children’s hospital and the wonders of knowledgeable nursing staff, specialists, medications, and high-tech gadgets. We were trying to support our other children, reassuring them and comforting them, when we were so bewildered ourselves. When it came to praying to God, I had nothing. I recall walking with Him, but not talking with Him. I had many accusations for Him, but I could not find space to converse and listen to Him in the noisy panicked life we were living.
Noticing God again
Albert had open heart surgery at three months of age. It was a nerve-wracking day of waiting, but all went well. The next day was the first day I did not go to visit him in the hospital. He was still drugged up, but stable in the ICU when we called. I felt like I was wagging school and not meeting my obligations as a mother. But I needed a rest. A day to just sit at home in the sun. To reflect, to breathe, and I noticed God again.
God was always there
God had never left. He had never not been present. He was waiting for me to catch up again. God had surrounded me with everything I needed.
God had been next to me in that nurse who spent a solid ten minutes moving all of Albert’s tubes to one side of the bed, just so I could hold him for the first time in ten days. He had been in that specialist who kindly drew pictures of Albert’s heart, so we could better understand. There he was in that hospital cleaner who offered me a beautiful smile at 6 AM. He was there in the dozens of friends and families who cooked and delivered meals for us at home, babysat my daughter so I could visit the hospital, and prayed for us. God was in the priests who comforted and strengthened us. And in the autumn leaves that had slowly changed colour as the seasons had moved around us, he was there.
God had never left. He was waiting for me to catch up again. God had surrounded me with everything I needed.
New directions
Albert stretched me so far beyond my comfort zone by his health issues, Down Syndrome diagnosis, and his absence from our family home. I was bewildered that, after seven perfect children, I would receive this sick, struggling, challenging child from God. It has taken me a while to accept that Albert, too, is perfect. He is a child and creation of God – he could be no less! I needed to rearrange my concept of perfect. Albert needed me to be his mum, just like my other kids, but I had to accept that Albert would take me in new directions. And I needed to ask for the skills I would need along this new way.
God's Will be done
I’ve learned to stop and listen to God. When things are highly stressful and full of anxiety, I really need to pause, breathe and listen. Sometimes the voice of God is distinct and clear; other times He is a presence and a hand on my shoulder. At times I despair and cry and rage at God for thinking that I could be the best mum for Albert. Other times I humbly thank Him for the gifts He has given me – in my husband and children. My favourite quality of God is His constancy. I’m an erratic, emotional child of God, and yet, there He is, just waiting to pour out the gifts of the Holy Spirit on me. May God’s will continue to be done.
3 Responses
Dear Susan, I have not experienced what you have been through, but I can very much understand your pain. It is good to know that God has been there for you and your family through it all.
I pray that your son Albert will continue to make progress and that as the years go by, what you have been through, mysteriously fits together into God’s eternal plan