One Sunday, I woke up from a long nap with aching and full breasts. I put Mack on me and caught myself marveling at our last accomplishment. I reminded myself that he will meet these milestones when he’s ready. Mack drank so naturally and with an eager happy sound and I nearly forgot the struggles of the months prior. I smiled and felt his tiny body up against me. I traced his cheeks and chin with my fingers, his skin the same temperature as mine. So warm and sleepy…and wet. By the time I realized what was happening, my shirt was drenched with fresh milk which had slid in and out of Mack’s body like a waterslide. I scoffed aloud, placing a receiving blanket between us to soak up the spillage coming out of his belly hole. Regret, guilt, anger, all the emotions bubbled over.
My ever watchful mom had witnessed moments like this, my exasperated sighs and numerous shirt changes. My mom, the woman who raised us with no money in a trailer and never let me know that most kids had more than one barbie. My mom, the woman who created a home for my Barbie out of laundry hampers and empty cracker boxes. My mom, who reminded me there is always a solution even if you have to think outside the box. My mom dropped a piece of fabric on my lap. It was a thick belt that would cover Mack from armpit to pelvis with a pocket in the middle and velcro on the ends to fasten it. The pocket would hold a menstrual pad which could be disposed of every hour or so when it was filled. Machine washable, life saving, this was just one of several life lines that my mom created for me. Although it didn’t help with the pain and rashing, it became a practical accessory that helped us on trips to therapies, out on walks and ensured I would no longer need to do laundry multiple times a week.
Once the belt obscured his leaking, I got my first taste of what an invisible disability looks like. On a visit to relatives, the topic of his tube would come up in the past tense ‘aren’t you glad that thing is gone?’ and the question would linger. I would smile but my mind started to wander. Was I glad? Would I pop it back in if it was an option? Mack would often cry and whine when Huey the hole would get agitated and the rash grew too large. People hearing these cries were always full of answers; Maybe he’s hungry? Maybe he needs more breast milk? Maybe he’s cold? Maybe he’s tired? I would explain that his cries and fussing were due to his hole. I would explain how it worked, why it was painful, even show them what it looked like. They would wince at the sight of it but persist with the suggestions. ‘When my son would cry like that, it was usually that he was…’ cold, hungry, thirsty, bored, you name it and I heard it. No one believed me and once his shirt was on and there was no sight of the wound, they would engage with suggestions as to how to care for my baby. Their words were assertive, he is just like every other child, you are just like every other mom, don’t think your life is any harder than anyone else’s.
Therapy
The morning of therapy, I had wrapped Mack’s belly in his homemade belt and it gave me strength. Not a traditional mom to mom gift but one that empowered me to head into his physiotherapy. I got my phone prepped with songs from Moana to calm him if he was in pain and plenty of bum cream and gauze in case we had to do a ‘clean up on aisle belly hole’. I packed four shirts and two pants, just in case. I felt prepared. The team greeted us with smiles and encouragement “he’s grown so much!” I felt warm being around these women who had worked with kids like Mack and would remind me, with kindness, that each kid moves at their own pace and in their own way.
Today’s therapy team was Elaine and Elizabeth. Elaine, our physiotherapist, is one of the first professionals I warmed to, reminding me that people could be fully good and kind without agenda. On our zoom calls and meetings outside, her big smile was meant for Mack who was admittedly oblivious but I reaped the benefits of her kindness. She would dress in comfortable and colourful dresses and I was transported to kindergarten and the adventure of wonder that childhood brings. She helped me see the world through Mack’s eyes and marvelled alongside me at his successes. Her enthusiasm for Mack’s unique personality reminded me on hard days that he could be loved by someone besides me. Her emotions would brim over without boundaries, sometimes letting tears well up in our sessions, unabashed, gushing at my love for Mack and making me feel seen as a mom.
Elizabeth came into our lives before Elaine, a face on a screen for many months before we met in person. A tiny woman with a soft voice and an eagerness to learn all aspects of child development. She has been the queen of throwing positive comments our way that have helped me put an armour up on rough hopeless days and helped me let my armour come down on days I wanted to share without fear. She often would sit quietly when I updated her but I could tell her brain was combating which of a million things she wanted to offer to help. She would lead our team of therapists, always having the answers and replying with emails or in person with empathy and compassion. Our development centre became a safe place to mother the way I wanted and for me to learn the best way to guide him. On days with the leaky belly hole, I was more reserved, I feared them seeing us this vulnerable and wondered if I would still feel like a super mom if they knew what things were like day to day.
That day, I began answering questions from our team about Mack’s developmental stage and soaked in any ideas they gave me. Elaine outlined the next steps of development for Mack including rolling and getting into a crawl and I could feel the prickle of tears at the back of my eyes. We would try vainly to get him to reach out for furniture or a toddler walker to entice him into movement. He would look at me, confused, before his arms would go limp at his sides. No thanks mom, I don’t want that. Elaine cooed at Mack and asked if we are able to do any tummy time to help him gain strength in his arms and shoulders. I nonned as if it was not a problem, wanting to get an A in momming from our team. I would not explain the exhaustive measures of trying tummy time over a towel and watching the liquid in his belly pour out, watching the weight we were trying to put on him soak up into his towel. I didn’t tell her about the screams of pain from his belly hole and crying over his little body while he writhed in pain, feeling helpless. I wouldn’t fully get into the heartbreak of offering Mack his toddler walking toys to watch his confused gaze and his arms grow limp at his sides. I wouldn’t explain how putting him in a crawling position made his feet turn blue for an instant because his mom was so eager to see him crawl forward but he wasn’t ready. There was something holding me back, not trusting that any place could be safe for such strange experiences as ours were these days.
As I spoke about what we’ve been trying so far in an overly chipper tone, I saw a cloud pass through Elizabeth’s eyes. I followed her gaze to Mack. He was sitting up with his belt sliding up his body and the milk visibly leaking out down his shirt and pants. I laughed, oh you know how it is…except no they don’t. My face flushed and stomach turned. I felt as though I had been caught tripping up the stairs or my skirt was caught in my underpants without my knowledge. I couldn’t stop my brain from wandering down the shame spiral. Him and I are weird and wrong. My child has milk leaking from a hole in his stomach, he’s making a mess on the mats at our therapy team’s centre that are trying to help us. The two kind women asked if I needed anything to help with the clean up. A strained laugh came out. I'm fine, I'm fine, I just wish he would move is all, I wish he would roll, crawl, scoot, shimmy, do ANYTHING but lay there leaking. Only a shaky laugh came out. As I hurried to get him appropriately covered and dry, Mack started to fuss and we had to cut the appointment short. Two weeks looking forward to this conversation and it was agreed that we touch base after Huey healed. I felt a mix of shame and relief that this would be the last time we would need to do this with Huey. As I strapped Mack into his carseat, he caught my damp eyes and his gaze was serious and concerned. Oh buddy, I’m sorry I can’t be better for you right now. Driving home, I would make up fabulous stories of how mama knew things would be okay. He didn’t need to hear them, but I did.
Surgery Day
In late February, Christine the g-tube nurse emailed me recommending we plan for a full surgery to close Mack’s stomach hole. I remember the exact moment I read it, I remember the relief and fear rushing over my body, crying on top of Mack, more concerned with a twirling toy than his mom’s emotions. Our busy house of five was empty and it was only Mack that heard my sobs echo through the kitchen, exhausted tears full of the hope of relief.
The surgery came three weeks before I was due to go back to work full time. At eleven months, Mack had mastered sitting up and was sleeping a solid 10-12 hours a night but refused to move in any direction. He would babble when he wanted to, infrequently and never if anyone was around that wasn’t from our household. The day of surgery, he was not allowed to eat or drink for the two hour drive to our Children’s Hospital. We settled into our room and they handed me a gown that went down to his ankles. What began as two hours of hunger soon became five and six. A kind nurse popped in to update on the delay and suggested juice or water to fill him up for the time being. She had no way of knowing that getting him to drink anything besides from the breast was useless at this point. Piles of cups had ended up in our cupboard with no success. The nurse returned with apple juice and I smiled and pretended that he would just love this. Mack sat in the pre-op bed in a pink and white patient robe, sad and hungry and I sat with apple juice. Isn’t it ironic that tube feeding this would make his life so much better in this moment? I laughed at my own joke. Mack didn’t think it was funny. I tried showing him how to sip from the edge and filled a syringe which he refused to open his mouth for. Finally, the spoon for his puree was sitting in the bottom of my bag. Would he try it? I dipped the spoon in, making loud happy noises and drinking it myself. His skeptical little eyes narrowed. What are you up to mom? I offered the spoon to him and he drank the juice without issue. Yes! Success! I was elated and let out all my mama hurrahs. A nurse came in to ask if we needed anything and I laughed manically “he drank from a spoon!” Her eyes widened. Not out of excitement or disbelief but likely from fear over my strange enthusiasm for my kid drinking apple juice. Mack and I took photos and videos. I felt useful, like I was getting something in him, helping his belly stay full even if just with juice. It was maybe an hour later when he laid down in the bed that I realized most or all of the juice had leaked through to the bed below him through his hole. I closed my eyes. How do I keep forgetting? Towels, new clothes, blankets, reset. Damn this hole, I was ready to never see Huey again. The surgeon that popped in before our time was the same kind man that had placed the tube originally. He was a handsome, tall man with ginger hair and bright eyes. He smiled when I corrected his name for the hole ‘no, no, it’s Huey, he has a name’. When he left for surgery, his eyes sparkled and I trusted him fully…I had to. The surgery went well and Huey disappeared into the night, replaced with what we called ‘Sammy the scar’ who has now become just another part of Mack’s body and a story he’ll never remember.
