I'm a big fan of mommy blogs, specifically the blogs of special needs moms, but I never considered starting my own until recently. Probably because I'd hoped - ridiculously, I'd hoped - that Goldenhar Syndrome wouldn't be a big part of my son's life.
Sure, he was born with one of his ears on his cheek, disconnected from the pipeline to the inner ear and lacking hearing; his jaw is too small on one side; he has some abnormal vertebrae in his neck; one of his pinkie fingers doesn't straighten all the way. Yes, since he was born I've heard the standard comments about having a 'special kid' and of course, I'm the first person to tell you how amazing he is. But in my mind he's always been totally normal. Just him. Nothing different about that, no more than anyone is different. He's not special because of these congenital issues. He's special because he's had his own taste in music since he was six months old, because he's always seemed to know exactly who he is and exactly what he wants. Because he can throw a ball better than some adults I know. Because he's hilarious and smart. His beautiful hair is special. His amazing smile is special. Having Goldenhar Syndrome does not make him special. So I didn't want to start one of these blogs. Maybe no mom does.
I remember when he was a little baby all the doctors saying we were in it for 'the long haul'. Seriously, I think four doctors told us that in the span of two weeks once. My son was tiny, and I think my husband and I just blinked - oblivious.
Ev was born by c-section at the end of a labor he didn't tolerate very well, and when my husband held him out to me, just long enough so I could brush my cheek against his smooth one, I don't think I noticed his ear. I noticed it in the recovery room, but I didn't care at all. I was overwhelmed by being his mother. He was perfect and glorious. My husband took the ear thing hard, and I remember thinking he had lost his mind. It was just an ear. What did that matter?
His face was remarkably symmetrical at birth, at least compared to now, so it looked like he'd been socked in the right cheek and maybe that cheek was a little swollen compared to the left one, and when he cried, the left side of his mouth didn't pull down like the right side did, but those were mini issues to me. I had my baby, my first baby, and I was floored.
Shortly after Ev's birth, my husband called our priest, very upset, and the priest came to the hospital. He was there by the time I started coming around more in the recovery room, and unreasonable though it may be, I still hold that against my husband. Turning my joyous occasion into a catastrophe worthy of calling the priest. I know this isn't fair - and for what it's worth, our priest is wonderful, and didn't do anything to make the experience negative - but I still feel that way.
The sky wasn't falling. It was just an ear, a slightly smaller cheek, a mouth that didn't turn down on one side. What did that matter?
The next day, at time when I was (somehow) alone in my hospital room with Ev, our pediatrician and another doctor came in and told me Ev was likely deaf in both ears, and that they thought he had Treacher-Collins Syndrome. The weird thing is, I don't remember how I felt. I guess I was devastated. I remember thinking Jim and I both love reading and Ev would never be able to enjoy books. We already had him a bookshelf full of books, even books for older kids, like our British copy of Harry Potter and the Philosopher's Stone.
Looking back at the records I now have of our time at the hospital where Ev was born, it's clear he was never really nursing well, and we should have gotten a lot more help than we did. But we were discharged at 48 hours, technically given a choice but basically urged out the door because of our lousy medical insurance.
We were re-admitted almost 48 hours later because, during a strangely intense crying spell, we gave Ev Mylicon and he slumped and turned blue. When we got to the ER, we found that his blood sugar was horrifyingly low, he was seriously dehydrated, and all that sucking he'd been doing on my breast hadn't been getting him anything, due to the differences with his mouth and his jaw. That was my first truly terrible Goldenhar mom moment. I hadn't been feeding my precious new baby, and I hadn't even known it? What could possibly be worse than that?
I remember I didn't want to hold Ev. I was so upset, so ashamed and so embarrassed, I wanted to withdraw from the world. They did a spinal tap to be sure his low blood sugar wasn't due to some rare metabolic problem, and I remember when they brought him back to me, they told me he'd done so well. The doctor was perky, young, well-educated, and clearly keyed up over her unusual patient and what to do with him. I wanted to punch her in the nose. My baby hadn't done well during a spinal tap. He'd probably been so dehydrated and malnourished he didn't have the energy to scream.
It didn't take too long for the nurses on the pediatric floor of our small-ish local hospital to realize all we were dealing with was a serious feeding issue. I remember my favorite one, M., trying to convince me that it wasn't my fault. "It's his fault," she said. "He's the one who won't eat, not you." I wanted to scream at her for blaming my poor, innocent child for not being able to eat. The nurses kept referencing his 'facial paralysis', and my husband and I would just look at each other, and when they left the room we would whisper, "What are they talking about? He has facial paralysis? No he doesn't."
It was there for anyone to see. We just couldn't.
Throughout that entire time period, from the day after his birth through our visit to the pediatric ENT about two weeks after, I kept our local doctor's clumsy diagnosis of deafness to myself. My husband wasn't taking things as well as I was, and I knew he would be devastated if I told him our son was deaf. Also, I could tell Ev's right ear was fine - it had been a little crumpled from birth - and a quick Google image search revealed that he did not, in fact, have Treacher Collins Syndrome. But I still remember putting my mouth on his head so he could hear the vibrations of my voice.
The next two months are a crazy blur. My baby blues came and went, but appointment after specialist appointment revealed one problem after another, and I could tell I wasn't myself. Post-partum hormones plus the insanity that is figuring out all the issues with a GHS baby had me tied in knots. I was a mess, and I knew it. Ev avoided a G-tube because I almost killed myself keeping him fed. I fought our way to a laryngomalacia diagnosis and we thickened his expensive donor breast milk with three different thickeners in an attempt to find a concoction that didn't cause permanent constipation. I screamed for a sleep study, and the doctor ordered one despite his own belief that Ev looked fat and healthy; whaddaya know, he had sleep apnea. A visit to the cardiologist revealed a heart defect associated with feeding and breathing difficulties. In November, a few weeks after I threw in the anti-antidepressant towel and filled a prescription for Wellbutrin, he had heart surgery and spent about a week in the cardiac ward.
Clearly, my baby had a lot of difficulties. I even had a wretched sheet of paper from the geneticist diagnosing him with 'multiple congenital anomalies', a phrase I remember felt like a knife straight through my heart.
We were living day-to-day, and all I wanted in the whole wide world was for it all to just be over. The long haul? Try the sprint. We were sprinting from one problem to the other, just trying to get there in one piece. The heart problem was fixable. The spinal cord was fixed. We didn't have to do the feeding tube. We didn't need the trach. We outgrew our need for reflux meds. We even got cleared of sleep apnea at six months when he outgrew the laryngomalacia.
What I remember most about those early days was Ev screaming from reflux. I remember his fussy little face, and how he had a permanent crease between his brows - congenital frown lines. I remember how ashamed and anguished I felt that my baby had had a spinal tap, a heart surgery, an IV in his precious, soft little head. How when he went to sleep I couldn't cuddle him because I had to put an apnea monitor on his toe and oxygen in his nose. How the doctors sometimes looked at me like I was stupid and other times seemed to wonder what I had done wrong to cause these issues, when in fact I spent my pregnancy double-filtering my water and avoiding freshly paved streets and plastic shower curtains.
I didn't want to be a Goldenhar mom. I just wanted to be normal.
I wonder sometimes how much sleep I lost crying over how Ev would find a girlfriend. He's a beautiful baby with traditionally handsome features. The right side of his face is attractive by any standard. He's so athletic and so smart. But when he was an infant, I spent countless hours worrying over what girls would think of him when he's older.
I don't remember anymore where I was or what I was doing, but Ev was still in infancy when I heard a loud voice in my head say, "She won't love him for his looks. She'll love him for his strength." That was the first time I heard God speaking to me loudly about Ev's GHS, and it definitely soothed my heart some.
In March of last year, things settled down, and finally normalcy was ours. No more reflux meds, no more apnea monitor, no more oxygen. We'd always had Ev in a sidecar off our bed, but at that point we started bedsharing - something I adored and still enjoy, even as we consider adding another family member sometime soon.
I pretended, for a few months, that Goldenhar Syndrome would be a backseat issue, one we only acknowledged when we went to a crowded area and put on Ev's hearing aid. (He doesn't wear it much at home b/c Ev's dad and I both work from home and do everything LOUDLY so he can hear it in his right ear; he's always been ahead in speech, so it seems to work).
His vertebrae are abnormal, but they're stable. Yes, he only has one kidney, but it works fabulously. We'll get his ear fixed on the outside and probably do a BAHA implant when he's five. His jaw will have to wait until the early teen years, but we can handle weird looks in the grocery store if we have to.
We'd been told Ev's left eye was normal, a rarity for GHS kids. Recently we've found out that's not true at all, and in a week or so we'll be sewing the eye partially shut. After so long in normal land, this has really hit me hard.
I'll write more about it soon, but for now, I hear Ev stirring in the hotel bed!
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