When I first heard the word Cerebral Palsy, I had no idea what it meant. I knew, as I had from day one, that Henry had a fight on his hands. I knew that Henry was what we lovingly called “a bag of bones…” “our little lumpers…” “Mr. Froglegs.”
Henry was born two and a half weeks early. “Baby A” to his twin sister’s “Baby B.” They were delivered via emergency c-section due to Tallulah’s fetal distress. They were both a healthy weight (7 lb., 5 0z. and 7 lb., 10 oz. respectively) and we presumed would have no problems.
We were wrong.
We later found out that Henry had to be resuscitated at birth. They were both whisked away to the NICU; Tallulah for “immature lungs” and Henry for something they couldn’t officially diagnose (which was later deemed Respiratory Distress Syndrome, definitely the lesser of the evil possibilities!) Henry struggled to breath for 48 hours with inadequate breathing equipment until they finally intubated him, gave him Surfactant and transported him to CHOP where they saved his life.
It was a scary roller coaster ride. I don’t think the beeping of the NICU will ever be erased from my memory.
We thought the worst was behind us.
We weren’t expecting repercussions.
Henry started Physical Therapy at three weeks old. The birth hospital doctors initially thought he had a “club foot,” but it turned out to be a muscular issue (caused by sharing a cramped space with a twin). He was was fitted for his first pair of MAFOs (leg braces) and we continued with Physical Therapy.
Henry was four months old when our pediatrician voiced a concern with his “low trunk strength.” At the time, I didn’t know what her concern really meant, but I knew recommending a Neurologist couldn’t be good.
I decided to stay off the internet, but followed her advice and handed the job of finding a Neurologist over to my sister Suzanne. I was riddled with worry, and couldn’t take on one more task. Our, then, three year old son Finn, had just been diagnosed with autism, and I felt like my world was caving in. I was in shock and denial and knee-deep in research trying to “debunk” Finn’s diagnosis. All the while, exclusively breastfeeding twins, and trying to remain calm and somewhat normal for Charlie and Finn! I couldn’t take on a new diagnosis!
Suz came through and found a Neurologist. She even came to the appointment with me. The doctor was sweet and welcoming. She listened to my concerns: he favored using one hand over the other, he had trouble twisting his hands around to grab toys, he couldn’t sit unsupported, he wouldn’t bear any weight on his legs, and he had Tortocollis. She wasn’t overly alarmed, but she said she couldn’t “definitively” say if he had Cerebral Palsy without an MRI. And even then, we may not know what that meant until he missed milestones. So, we had to “wait and see.” NOT the answer this controlling, Type A, postpartum Momma wanted to hear!
She told us that the best thing we could do was get him therapy– physical, occupational, speech– whatever he qualified for. She explained that the brain, especially the infant brain, is a very malleable thing. Damage can be repaired. Pathways can be redirected. Unseen damage, as was the case with Henry’s eventual MRI at six months old, isn’t necessarily “not present,” it just may “not be detected.” She said she would be more likely to diagnose and treat him based on his presentation of symptoms, which would unfold over time. If his delays were still present at two years, they would repeat the MRI.
Henry was already receiving Early Intervention for physical therapy. I soon had him evaluated again and added another weekly PT and a teacher to monitor his cognitive, speech and OT issues. At one point, between all of Finn’s and Henry’s therapists, we had seven different therapists coming and going each week. It was hectic, but at least it kept me off the internet! Looking back, I could’ve really benefited from some bloggers I now follow, including Love that Max and Chasing Rainbows, but at the time I was just trying to breathe in and out.
Something happened inside me the day “presumed Cerebral Palsy due to hypoxia” was written in Henry’s chart.
I didn’t care.
I didn’t care because I knew that Cerebral Palsy didn’t define Henry. I didn’t care because I already resolved that Henry was going to be just fine. No. Matter. What. I didn’t care because Henry’s spirit and his light and his everything were in his eyes, not his body. I didn’t care because anything he did from the day he was born (and was transported out of that hospital) was a damn miracle!
Henry eventually began to hit his milestones… at his own pace.
Six months ago, I reported “some good news.” What I didn’t tell you was that it was a miracle. I didn’t want to say it because I didn’t believe it for sure. I still wanted one more follow up with his Neurologist before I really believed it, but yesterday she confirmed it. Henry is “just fine.” She no longer sees signs of spasticity or hypotonia. His muscle tone on both sides was “even.” She said that if Henry were to walk in her office today, she would have “no concerns.” She “wouldn’t even think he were delayed.” She told me (what she told me six months ago) that we didn’t need her anymore. She said that we didn’t need to worry about Henry anymore.
All this worry will be a distant memory someday, but I will never forget the miracle that has become Henry’s happy ending.
My heart feels so light it could fly away.