My little brother has a health condition. We don’t know what it’s called.
He was born in 2008. His birth had a lot of complications, most of which we still don’t quite understand. Doctors limited the amount of time we had to spend with my mom, let alone see her. She was transferred between three of the country’s major hospitals in the space of 5 days due to the severity of her issue. I was too young to understand much, but from what I picked up, she fainted while giving birth via c-section and had to be put on oxygen for a few weeks.
Meanwhile, my little brother was put in an incubator, deprived of breastmilk, touch and all the good things babies are supposed to have to help nurture their growth. We suppose this is where things went south for him. But he was way too young for us to notice anything was wrong. My mom and little brother were out of the hospital about a month later. They both looked healthy; baby was all fine and cute, and mom had lost a lot of weight. She was eating tubeless and her scars were healing. That’s all the faith we needed to know we had gotten out of the thick of whatever storm that was.
Realizing the Health Condition
We only started noticing things weren’t quite right a few months later. My little brother wasn’t achieving developmental milestones when he was meant to, or when most babies do. He didn’t sit until he was somewhere around 8 months old, and everything else – crawling, walking, talking – were just as slow to come. During that period of heartbreaking revelation, my mom had started visiting hospitals again. She wanted to know what was wrong with him. Had the doctors missed something? Maybe we had mishandled him unknowingly.
She went from general practitioners, all the way down to physical therapists. One said my little brother’s brain had been deprived of oxygen during birth. Another said he had spent way too much time in the incubator without being given the right medical attention. One said he just needed to be in the presence of “kids like him”, so that he can develop a familiarity and belonging. He said he couldn’t quite develop with us because he was not okay and being around us affirmed that “un-okayness”.
His health condition was different…
That was how my mom started making daily trips to a physiotherapy hospital about an hour and a half away from mine. Mom hated being there. She said the doctors there called my little brother paralyzed and she didn’t think it was that bad. The babies there were much worse, and they had names for their illnesses and disabilities. It was there we learnt of things like cerebral palsy, encephalopathy, autism and multiple sclerosis, to mention a few.
All the doctors my mom had met had confirmed my little brother had neither. Although he displayed one or two symptoms of most of the potential diseases. We decided to not focus on the “what” anymore. It had been over a year and we were all exhausted. We just wanted him to get better, and so we focused more on the physiotherapy and less on what had brought us to this place.
Putting him on a walker
The physiotherapist my little brother worked with was just as forward-thinking as us – bless him. He suggested baby toys that could help my brother’s motor skills. The biggest life changer was the baby walker. My little brother loved it because, for the first time, he could get around the house with little to no support from the rest of us. Little man was running on wheels in just a few weeks! The physiotherapist then suggested a much bigger challenge; a walker (actual adult one, but kid sized). He said my little brother needed to try and get around without the comfort of sitting down. His legs needed the training and his mind needed the challenge. We were terrified for him, but gave it a chance anyway.
The first few weeks were rough on him. He would fall on his back often but this little guy was so determined, he would get up just as quickly and ask to be put back on the walker. It took about 3 months for him to walk properly on it. Then about 6 for him to walk without it at all. In about 9 months, he was getting around the house walker-less. That was a miracle another doctor had told us to not look forward to. He said babies like ours would live their life on a wheelchair, and that’s if they even got the muscle strength it took to even sit on one.
A glimpse of hope…
Well, ours did, and I think it’s by my little brother’s own tenacity. I remember we’d have nights where he would want to run from one end of the room to the other. Plunging himself to his older brother or sister’s open arms. We would do this until our arms would get tired, but he would still want to go at it anyway. I think, contrary to what we had been told earlier, it was my little brother’s being around “okay” people that made him want better for himself. It’s a trait he still has today – one that worries me, but that’s a story for another day.
His milestones with the health condition
My little brother turns 14 in July. He can walk, but his form isn’t perfect. We suspect his spine might be bent somewhere, but we’ve decided that’s an issue he should make a decision for when he’s older or ready to. He’s okay as is, and so are we. Currently, he struggles to hold things that need him to form a fist or anything similar – spoons, cups – but he has the best grip that won’t let him drop anything once he gets a hold of it. Keeping his drool in his mouth is still a conscious decision for him, but he has grown enough to know to wipe it off.
He struggles to mouth a lot of words, and will use alternative languages to make a point. Also, he has a fierce independence that makes him resent help, but a tenderness that lets him ask for it. This means he’ll hate you if you open the car door for him, but will gladly ask you to unlock it when he needs to get out. He hates buttons but will tussle with them anyway. We stopped bathing him 5 years ago, and he even knows how to do his laundry (the underpants and not-so dirty shirts).
Of competent health institutions…
My little brother has a health condition. It is unfortunate that we still don’t know what this health condition is called. We’re glad he has achieved way more than most doctors predicted for us. If we could have one wish, we would hope it was not this hard for babies and families like ours. We wish my little brother could namedrop his condition to inquisitive strangers and rude classmates. Perhaps that would save him from the bullying he has so often had to endure. We wish we knew, and maybe then, we could have done right by him, and offered him a life better than he has now.
People we’ve shared these sentiments with have often told us to be grateful he turned out the way he did. Because so many other kids don’t. However, our gratitude for the grace my little brother has had does not wipe away the fact that other kids aren’t a measure for what “good” is or isn’t. And that our medical facilities should not solely depend on that grace; that they should be able to treat, support and manage what we saw to be an issue that most parents go through.
If I have kids, I pray the doctors have names for everything. And that I don’t have to play guessing games with their wellbeing.
The guest blogger chose to remain anonymous.