“Hold this bag of ice over his face,” the doctor said. “It will feel like you’re suffocating him, but I assure you, you’re not. We need to get his heart rate down — it’s over 200.”
My husband, Johnny, did as he was told. That’s how our new baby and second son, August, was welcomed into the world. Then he was zoomed down the hall into the NICU, hooked up to machines, under garish lights, followed by a small army of white coats.
I sat alone in the postpartum hospital room, confused and scared, thinking, What is wrong with him?
The nurse told me his vital signs weren’t good. He had trouble latching onto me, and he was small for a full-term baby — just 5 pounds, 12 ounces. His mouth was minuscule, his body rigid. I felt like a failure for not being able to nurse him, angry at my body for not growing a perfect human, and scared I might not see him again. I was hoping Johnny would bring our newborn back and tell me everything was fine.
August was far from fine.
I went to see him in the NICU, where doctors said foreign words — “SVT,” “sepsis,” “neurogenic.”
They said he was very weak and had low muscle tone. They ordered blood work, X-rays, MRIs. There were so many doctors — a different specialist called in for each troubled body part: cardiologist, nephrologist, neurosurgeon, ENT, geneticist.
The doctors invaded his body to release a tethered spinal cord and unravel his colon. His racing heart was managed with digoxin. I can still see his small body lying in the isolette, buried beneath wires and IV tubes, bandages, a blood pressure cuff and a pulse oximeter.
He was like a tiny bomb I was afraid to touch, but the nurses encouraged me to hold him to provide crucial skin-on-skin contact. There was barely any open space on his body where my hand could fit.
We sat, mother and son, in the recliner next to his bed, a fabric curtain separating us from the sick baby next door.
I wanted so badly to fix him — to protect him. We were thrust into this terrifying new world and needed to learn the language. I didn’t feel equipped to make decisions about his care. My feelings of failure only grew with each unsuccessful feeding and every setback we encountered.
After genetic blood testing was done, August was diagnosed with the terminal deletion of the long arm of chromosome seven. They said of the few children known to be afflicted with this condition, none lived past their teenage years.
“Their teens?” I sobbed. This was a death sentence.
Sometimes babies died while I was in the NICU holding August. Everyone knew, but no one said anything or even made eye contact. Pictures of families, mobiles and artwork made by older siblings were quietly removed from the area surrounding the crib, and soon a new critically-ill roommate would occupy the space. On Sunday afternoons, the lights dimmed in the NICU while a volunteer played a harp during “quiet time.” I wondered who else was sitting behind their curtain quietly sobbing with feelings of gratitude for the high-level care and grief for their baby’s suffering.
There were also moments of levity when the nurses told me, while laughing, “Everyone knows when he has gas, we can hear it across the room. We all say, ‘That’s our boy August!’”
I appreciated their ability to find those moments of joy, and it was nice to hear something positive about August for a change. The nurses would also share funny or cute little things he did while I was home sleeping. I loved to hear about his loud farts, his “old man” snoring, and how he would sweetly settle down when they put a cloth diaper on his head.
They also delivered the bad news of what happened overnight. They reported on how much they fed him and how much of it he threw up. Once they had to explain why they replaced and relocated his IV, because he ripped out the one that was in his scalp.
During his stay in the NICU, he endured procedures to untether his spinal cord, to correct the malrotation of his colon, to remove his appendix and have a feeding tube port placed in his abdomen. The nurses told me he had to go back on morphine because he was in so much pain after surgery.
How were we supposed to go home and take care of our new baby with so many medical needs and also take care of our 4-year-old, Porter? How could we do it when we had no family in town to help us? How do you move forward after a doctor tells you your son probably won’t live into adulthood?
August was in the NICU for five weeks. He came home with a feeding tube on the first day of spring 2007. We were so excited to leave the hospital, but also terrified to leave.
We had private health insurance at the time. I didn’t open a single medical bill until after we were home for a couple months. The outrageous numbers seemed fake — like I would pay them with Monopoly money. I chose to believe that they hadn’t been submitted to insurance yet.
Medical debt is the number one reason why people become bankrupt and lose their homes in this country. It’s crushing to come home with a sick baby, and have to wait on hold with the hospital to get on a payment plan. This is one more reason I felt like a failure.
Johnny works in tech where layoffs are common. Each layoff produced a deep sense of doom. Switching insurance companies meant having to call each doctor on August’s medical team to ask if they are in-network with our new policy. The yearly deductible reset to zero.
At home, August’s sleep schedule was backwards — if he slept at all. We tried every position and surface to make him comfortable. For a while he slept in his car seat on top of our bed. Our exhaustion and fear made it difficult to manage his schedule of medications and feedings on our own. We kept a spreadsheet for doses and times, another for appointments, and a third spreadsheet to track who was taking care of Porter.
I didn’t understand August’s condition, so I needed to become an expert and gain a new vocabulary filled with difficult terms like “proprioception” (sensing your body’s position and movement) and “supraventricular tachycardia” (very fast or erratic heartbeat).
I was determined to do anything I thought might help August. I wanted to prove the doctors wrong. I told myself, They haven’t seen a kid with this problem before, and they don’t know what his life will be like. I figured the more doctors we saw and the more therapies we tried, the better his chance was at getting closer to a typical life.
In the early years, we had two to six appointments a week. Each one required a carry-on suitcase full of necessities. We had to bring the feeding pump and liquified food, diapers, wipes and pacifier, his special blanket and Abby Cadabby doll for comfort. We could not forget his iPad for distraction, his glasses or his hearing aids.
I dutifully recited the names of every medication and procedure to each specialist we saw. I held August as he cried while they took his vitals, checked his ears, noted his weight and height. My life was hijacked. His care required one of us to be available to him at all times, and the other one to work full-time to maintain health insurance.
Johnny had to go back to work too soon after August came home from the hospital. I was used to being a stay-at-home mom, but this was next level. I took him to occupational, physical and speech therapy. We tried music and hydrotherapy, as well as therapeutic horse-back riding. We’ve seen chiropractors, naturopaths, massage therapists, eastern medicine practitioners, acupuncturists and medical intuits.
When August was 3 and still on his feeding tube, I found a clinic that specializes in treating kids who have difficulty eating and had a high success rate of weaning them off their feeding tubes. It was in Austria, but that didn’t stop us. I used my skills as a former development director to raise money for the monthlong treatment, and we were able to remove his feeding tube a few months later.
I am not one of those mothers who will tell you “Everything happens for a reason,” or “God only gives you what you can handle.”
“I don’t know how you do it” became a common refrain from other parents, but I didn’t feel I had a choice. I wasn’t special. I didn’t want to be painted as a hero or saint. I didn’t volunteer for this medical motherhood, but I tried really hard to help August meet milestones.
I’ve also done things I feel terribly guilty about, but I had to do them in order to help him. I immobilized him to get ultrasounds of his kidneys and X-rays of his spine, and held his head still to have his ears and eyes checked. I’ve practically laid on top of him at the dentist. He’s small for his age, but so strong. Now it takes four adults to soothe him and hold his hands to get blood drawn.
Nothing could have prepared me for the emotional and physical cost of having a disabled child. No one could have explained the heartache I would feel every time he was rolled through the operating room doors or the feeling of failure every time he lost a gram of weight.
When August was 1, he had severe pneumonia and was in a medicated coma for 15 days. I didn’t think he would survive. He had another close call years later. When we got to the ER, he had sky-high blood pressure and was dehydrated, which was affecting his organs.
Sometimes I resent this life as a caretaker — as a parent who has been grieving since my son’s birth and living with the fear that he will probably die before me. I am prematurely grieving his death, while also lamenting his limited life experience. It’s sickening, but I find myself mentally drafting a Spotify playlist for his funeral. The bigger fear is if he outlives us, how will we trust anyone to take good care of him?
I’ve developed my own chronic conditions after living in fight or flight mode for so long. The fight was draining me and wasn’t paying off for him either. The demands of this life left me with complex regional pain syndrome and a PTSD diagnosis.
I had my own needs, and I couldn’t maintain my full-time position as sentry. I wanted to be competent, but had to accept that we needed help and get comfortable saying yes when it was offered. We let friends run our errands, pick up August from preschool, and pay for massages and dinners.
August’s disability requires me to be so much more than mom — too much. I was consumed with making August better, but it wasn’t sustainable. No matter how super I was, Super-Mom couldn’t fix him.
One day while listening to a podcast a couple years ago, I heard a mother talking about her neurodivergent son and how she used to do the same thing I was doing. She worked hard to change him, forcing him to fit into their family, and one day realized she needed to stop pushing, to accept him and his diagnosis, and just try loving him. I saw myself in this mom and was able to ask myself, Can I just love August as he is? Would I be failing him if I gave up the fight?
I decided to make a change. I stopped researching and chasing the next new therapy. I accepted that he will always wear diapers and not be able to bathe and dress himself, or safely feed himself. I stopped taking him to feeding clinics, refused swallow studies and other tests that would require him to be sedated. I refused to unnecessarily force him to relive his medical trauma. Medical intervention can be the great hero… and also a villain.
August will turn 19 in February. He has outlived expectations, but his prognosis is still highly variable. Johnny and I are now paid to take care of him, and he receives Social Security income, but we worry about having enough money in retirement for three people. Our nest will never be empty. Instead of looking forward to traveling and a sense of freedom, we must envision aging as frugal caregivers. We understand the importance of taking care of ourselves physically and mentally. We are making the time to work out, see the chiropractor and go to talk therapy.
August misses less school because he has fewer appointments now. Our interactions are more relaxed since I stopped looking at everything as an opportunity for therapy. He begrudgingly gets up at 7 a.m. With a lot of help, he is dressed and fed breakfast, and gets on the school bus with his wheelchair. He uses his communication device to talk to his classmates and teachers about his dog and favorite YouTube videos. He still goes to therapeutic horse-back riding sessions because he loves it. On the drive there, we sing along to “Eye of the Tiger” and “Back in Black.” He loves to listen to and play music. He is cognitively closer to a preschooler than a high schooler. He still loves his blankie and Abby doll, and he plays on the unified basketball team.
Like many teens, August watches a lot of YouTube videos after school. He enjoys long car rides every Saturday morning, but unlike most teens, he will never be able to drive himself. Still, he is happy and surrounded by love.
Some days, I think about what it took to get here. I think about the time I wasted feeling like a failure. For too many years, I measured success incorrectly. I was considering his broken genes, his difficult behavior, the inconvenience of it all. I was measuring him (and me) by his deficits. I was ignoring his bright light, the way he charms people, his sense of humor, the way he always knows when someone needs a hug, and the ease he has saying, “I love you, Mama.” He doesn’t hate me for holding him down, and he doesn’t blame me for his genetic anomaly. He loves me, flaws and all.
Now I can see the best way to love him is by embracing who he is and letting go of the outcome. He is not a problem that needs to be fixed. I am letting go and loving him as his mama — not a superhero.
Janet Funk lives in Portland, Oregon. She is a caregiver for her son, August, and works part-time in the best thrift store in the city. She likes to hike on dormant volcanoes and kayak on slow rivers. Her writing has appeared in Business Insider and on the Writing Class Radio podcast. Check out more of her writing and photography on her Substack, House of Funk.
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