G.K and Stephanie

The gift of gratitude

I have shared this story elsewhere, but I wanted to include it here. Hopefully, it will explain why I am such a fanatic about G.K. Chesterton, and want to share his writing with everyone I meet. I have been a fan of G.K. Chesterton for a while - participating in local society meetings, and even running one myself. During the pandemic, a group of friends called the Chesterchicks began to meet weekly to discuss Chesterton’s work and support one another. During this time, his spirituality and philosophy really clicked for me - helping me dive deeper into the mystical Truth of the Catholic Faith. I moved to Maryland in May of 2020, when Covid restrictions were still brand new. Shortly thereafter, I became pregnant with Stephanie, and she was born in early 2021.

Stephanie was born at home on St Valentine’s Day – a perfect love letter from God. As a geriatric mother, I had been poked, prodded, and tested, and I had discovered that she would likely be born with Down Syndrome, but that her heart and health checked out and we were safe to continue with plans for our peaceful, ordinary birth. Once she arrived, our midwife confirmed that yes, Stephanie appeared to have an extra chromosome – and then left us to get to know one other. All of us fell immediately in love.

Stephanie’s midwife returned to our home for her 24 hour cardiac screen, and realized that something was not as it should be – and told us to head to Johns Hopkins for further tests. In the ER, I was completely shocked to find that she had a serious heart defect and would need open heart surgery within the first few years of life. Plans were made to admit our baby overnight and then discharge her at home with equipment to monitor her oxygen. I was shocked and saddened to find out that she was one of the 50% of babies with Down syndrome who have a heart condition – but glad to be in the right place to deal with it.

We settled in for the night on the cardiac floor, eagerly anticipating our discharge the next day so that our “babymoon” could continue. Due to pandemic precautions, I was alone in the hospital and my husband was checking in by phone and FaceTime. At about 3 in the morning on Ash Wednesday, we received some shocking news; in addition to Trisomy 21 and congenital heart disease, Stephanie had a life threatening blood disorder- doctors told us that she needed chemotherapy and transferred her to the ICU. It was clear at that point that I would not have to give up chocolate to experience a meaningful Lent.

The next week was a constant struggle – problems getting bloodwork led to sepsis. Her abdomen began to swell, her labs were very abnormal, and she was very jaundiced. She stabilized and we were able to continue her treatment on the oncology floor instead of the ICU – I was hopeful that we could finish her chemo and get her home and back to her siblings. We began counting the minutes down to the doctor’s prediction of her discharge date.

A week after she was admitted, Stephanie’s primary oncologist visited our room about 5 PM. He told us that he had been consulting with the world’s expert on her condition, and he was sorry to tell us that “things did not go as they had hoped.” Our dear daughter was in liver failure and they did not expect her to survive. “Should I call my priest to have her baptized?” “Yes, NOW. When it happens – it will be quick.” I messaged our priest and he said he was on his way. Due to the pandemic, outside priests were not allowed in, but our nurses made the impossible happen. Stephanie was baptized and confirmed in the Catholic faith.

I was in shock – we hadn’t even heard of this condition just a week before and now it threatened to take our daughter’s life. My mind went to some very dark places. Where would she die? Would it be here on the oncology floor? The ICU? Would she be intubated? Where would they take her when she was gone? How would I tell my children? Did God give her to us, just to take her away? Despair threatened to overtake me.

I undressed my daughter down to her diaper and laid her on my chest, weeping. I began to pray, and my thoughts turned to Chesterton’s essay where he remarked that little children were grateful to have their stockings filled at Christmas, and that we should be grateful and amazed to have our stockings filled every day. As I did, I heard a quiet whisper in my ear. “Look, Susan, she’s right here with you. Look at that cute little nose – those beautiful toes. Find the wonder and beauty in this moment. If you spend this time, however long it may be, that you have with your daughter, despairing about the future, you will miss the amazing gift you have been given today.” In my darkest hour, Chesterton was a faithful companion – the gift of his spirituality paved the way for an infusion of supernatural joy.

Everything became a wonder. By being fully present and open to the ordinary beauty of the present moment, my despair gave way to a celebration of life. I stayed awake most of the night with Stephanie on my chest. As the sun rose over the Inner Harbor of Baltimore outside our hospital window, I thanked God for the precious babe on my breast and the faithful husband sleeping at our side. My heart ached with the beauty of our ordinary, little holy family nestled in the arms of a Loving Father. Chesterton was there with us, leading the way to joy and wonder and closer communion with Our Lord in the midst of this terrible suffering.

I did not know how long I would have with my sweet little girl, but every diaper change, feeding, burping and snuggle took on a new meaning – the precious sacredness of the ordinary. The ultimate paradox – God was right here in a most intense way in all of the little things, even the diapers. A dirty diaper meant she was alive and still with us for this moment.

I knew that no matter what the future held, God would be with us. Just as He was there as we savored these precious little gifts of ordinary life, He would be there whether He chose to take her home or leave her with us. And I knew that, moment by moment, Stephanie would be OK, I would be OK, and the rest of our family would be OK. By living in the moment and practicing gratitude for every little bit of Stephanie’s life, and through supernatural grace, I was able to attain the joy and wonder explained to me by Chesterton through his writing.

Moment by moment, I’ve held, nursed, burped, snuggled, and changed diapers for week upon week. After 3 weeks, she had finished chemotherapy, endured 2 surgeries and was “out of the woods” and expected to survived. After 5 weeks, we went home on oxygen. 3 weeks later, we got rid of the oxygen and now lead a beautifully mundane existence – celebrating the milestones when they come, and visiting our providers as we need to. Against the odds and to her doctors’ surprise and delight, God chose to leave our precious daughter here with us – and I would say that is quite the miracle – but not the greatest one. The greatest miracle of all is the ability, through the intercession and intervention of Chesterton in my life, to find the God of wonder and joy, through gratitude, in the midst of my greatest sorrow.