The hours tick slowly by as I knew they would. No one remembers this day as I do. How could they? It is mine to experience. I remember the protest outfit of sunglasses, a black skull cap, and his black clothes. He was nervous and done with having this be part of his life; this was his voice. It is an odd feeling helping someone prepare for something they do not want to go through; being both their strength and the one walking him back to the operating room. We had sat through countless surgeries. It was sadly an old routine for us. 10-12 hours: go get breakfast, pray a rosary, take a walk, try to read, check in with the other kids, get an update from the doctors, repeat… But this one was different. We kept getting called back in: sign for blood transfusion, (if necessary), need to do one more procedure (2x). It just felt different. The what if’s were palpable between my husband and me, yet we stayed trusting in the process and the knowledge that we have one of the best orthopedic surgeons for Gabe’s condition in the world. He has known Gabriel since he was 4 weeks old! Deep breath… We met Gabe in the ICU after the surgery. He was sleeping, medicine was being administered; finally, we were on to the next stage where we could be a part. I sent Ryan back to the Ronald McDonald House to get some sleep. I would take this night shift.
I’ve often wondered what he dreams of when he asleep for so long; when the pain is so strong that medicine is being tag teamed and the necessity of not falling behind is incredibly real. There is nothing quite like chasing pain. Time is not your friend. I remember sitting down in my chair next to his bed, next to the hum of the pumps and the intermittent vitals being taken. Restless, I got up. The nurse came in to give him medicine. As I stroked his soft curls, I heard a choking sound. The nurse turned her head and looked at Gabe, then at me. She began to call out his name. Stats began dropping on screens. Alarms went off. She yelled, “Gabe! Gabe!” She began CPR as I held my son who had stopped breathing. Nurses rushed in. Doctors came flying through the door just waking up from grabbing a few hours of sleep themselves. “Mom, you are going to need to step out,” said one of the nurses to me. The doctor looked up. We have a relationship he and I. I am Mom. He knows my face; this part of my story too well. “No. She can stay. This mom is strong,” he says. So I stay. I stay as they call out my son’s name. I stay as they pump repeatedly across his chest. Carts come flying in. People. It’s a whirl of activity and I stay and hold my son. With no response from Gabe coming, they go to intubate. Now I am asked to step out. (all this takes so little time and yet I can replay it over in slow motion.)
The ICU is a fishbowl. All the rooms have glass doors. Our room is on the corner. It’s bigger. I sat outside the open room on the floor. My Mary medallion hugged close to my chest. Gasping for breath, I called Ryan. Turn around, I cried. He’s not breathing. Ryan began his journey back to the hospital; not knowing if his son would be alive when he arrived. Such different experiences the two have… To this day I am not sure why I called the people I did in those moments. “Gabe has stopped breathing. Please pray.” I remember calling my oldest son and our dearest friend who is Gabe’s Children’s Hospital nurse. She stayed with the kids at home in Columbus. How helpless she must have felt as I heaved and sobbed, reading stats only she understood, choking, gasping for breath and all the time wondering what was going on?
During the surgery, in one of our activities to pass the time, we sat in the parent waiting room. We met a new family whose child has arthrogryposis as well. We were relaxed and spoke about the many surgeries and recoveries with an easeful reassurance and experience. We looked at pictures of each other’s kids and smiled at all the stories. I remember myself slumped against the door frame of the ICU and this family whose child’s room was next to Gabe’s. I remember seeing them with tears streaming down their face. Would this be their plight as well? The fear and the reality of every family who walks the suffering path of a child is always there. It is an unseen yet always felt shadow upon our souls.
“What’s happening?” I remember asking as nurses rushed in and out. Praying, tears streaming down my face, wondering in shock truly, after everything he has been through, all the struggles, all his successes, this? THIS was how it was going to end? Incredulous, shock, frozen in time I sat.
Strength is a word that is overused. It is one that, when referenced, one might visualize bulging muscles or a particular number one can carry. It’s funny how small trivial that definition is when one experiences physically the need for inner strength. “This mom is strong.” Or “ What a strong young man.” Inner strength defines you in a way that forms your core. When you tap into the reserves of inner strength, your body doesn’t ask why, how, or where. It holds strong to that which has shaped it over time. For us, for Gabe, that is a strong faith. The knowledge that everything has a purpose to form us into the best version of ourselves; and that journey, is overflowing with joy and wracked with pain. It must contain both for us to attain that fullness. Pain and fear, not understood, produce anxiety and unnecessary worry. Acknowledged, they can be released and hope and trust step in. Hope and faith are where strength pulls from. We have faith and hope in what is to come.
For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God. Romans: 8: 38-398
“He’s got air!” were the words that shook me out of my surreal moment of shock. Voices changed. There was clapping. A nurse stuck her head out and said, “Mom, He’s gonna be alright.” I still weep as I mentally walk through it all; how I slept with the lights on for weeks next to his bed, how every surgery now became different. Procedures were no longer procedures. An event like this changed you, your child, and the hospital’s routine ease with which they handle cases like Gabe’s. I stop cold when I hear a code blue called over the intercom in the hospital. I stop because it transports me. I visualize that child’s momma. I feel her mental and physical gasp and I whisper a silent prayer to her heart. “Be strong momma. Know from whom and where your strength comes.”
Tonight and tomorrow, Gabe is on stage. Three of my amazing kids are. They have been working together for months on these productions. I am so proud of them. I have seen them reach within themselves rehearsal after rehearsal when fatigue sets in with the demands of schoolwork and other commitments. These are virtues honed over time and Gabe is no stranger to self-discipline. These next two days on stage, Gabe will make people laugh. He will inspire people with his joy. They will not know that one year ago, his time here was so near to an end. But I will. I will remember and appreciate every laugh, every tear, every breath for I know where true strength comes from.