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Growing Stronger as a Parent of a Child With a Disability

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When we long for life without difficulties, remember that oaks grow strong in contrary winds and diamonds are made under pressure
— Peter Marshall

I knew there was something “wrong” when Ethan was about 2 weeks old — he never stopped crying when he was awake. He was constantly restless, like he couldn’t get comfortable. I used to dread feeding him because he would be inconsolable. His skin started to break out in a rash, and I could hear him breathing across the room — every inhale sounded like a goose honking, every exhale sounded like he couldn’t get enough air.

We probably visited the pediatrician two to three times a week for his first two months of life. Every time, I was told he was fine. “He is gaining weight, newborns can sound congested, babies cry!” By the time he was 2.5 months old, I got about 30 minutes of non crying awake time in the morning when I would pray he would begin to outgrow his “colic.” Friends and family suggested I was spoiling him by holding him so much and he would never learn to self-soothe if I continued. As I paced around my house feeling more alone than ever, legs aching due to hours of constant walking, I was growing stronger.

At 4 months old, Ethan’s immune system couldn’t handle the dairy (that his pediatrician told us he wasn’t allergic to) and his gastrointestinal system stopped processing it. He fell off his growth chart and there was visible blood in his stool. We finally got a referral to an allergist and switched his formula. We were also told that our son had laryngomalacia — an airway defect that he would grow out of. As he cried out in pain during his formula transition, I grew stronger.

Ethan was diagnosed with RSV at 6 months and after the pediatrician sent him home, I took him to the ER. We were admitted for five nights due to oxygen desaturations, chest retractions and an elevated respiratory rate. I remember taking a couple hour breaks to go home to shower and the weight of Ethan’s first six months came crashing down on me. Would Ethan ever be “healthy?” Why hadn’t I done a better job advocating for him? Why him and why us? As I questioned my choices and Ethan’s future, I was getting stronger.

After seeing an ENT and a couple months of monitoring, we determined the next step would be a sleep study to determine if his laryngomalacia was causing apnea or oxygen deficiency. Ethan’s numbers were startling low: 11 breathing pauses an hour and a baseline O2 of 90 percent — with the lowest desaturation down to 34 percent. The next step was immediate surgery at 13 months. Surgery revealed his airway was almost all the way closed and the reflux our pediatrician said he didn’t have had burned his esophagus raw. After a change in reflux medicine (and pediatrician!) and a night in the hospital, things were looking up. As I sat awake with a miserable Ethan all night while he came down from the steroids, I grew stronger.

A few months later, his noisy breathing came back and my anxiety was at an all time high. Our second sleep study returned worse results than the first — a baseline O2 of 89 percent which required supplemental oxygen. I’ll never forget where I was when I got the call from the medical supply company asking me if I wanted extra oxygen tanks for the car. I was in NYC for work and broke down in the cab. This had to be a mistake… my little boy had gone through enough. After countless conversations with doctors, nurses and medical supply companies, Ethan was fast tracked for a second airway surgery and was now on a hospital grade pulse ox every night to monitor his oxygen. As I stared at his O2 every night for hours, I grew stronger.

Ethan was 16 months at this point and this second surgery would determine if he needed to stay on oxygen for the foreseeable future. If his airway was still obstructed and our amazing ENT could remove excess tissue, there was hope. I’ve never prayed for a doctor to find a reason for surgery like I did that day and it turned out the second surgery was a success! As I stared at his O2 saturation in the hospital stay at 97 percent the night after surgery, I grew stronger.

The statistic that only 10 percent of neurologically typical children only need one airway surgery was constantly on my mind. I played back concerns to his pediatrician around him favoring his left side and meeting milestones late. We met with neurology and the suspicion was cerebral palsy — which was confirmed at 20 months. It all made sense. All of it. The midline weakness, the GERD, the airway obstructions. The truth is, a CP diagnosis was a relief. I was already made strong by the contrary winds. I was a diamond refined under pressure.

I can’t see into the future, but I can tell you that I’ve never been more sure about one thing: we will tackle what’s next with the strength of diamonds and oak trees.

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Originally published: January 25, 2018
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