You imagine me completely devastated. You imagine me sobbing and
cursing a cruel world mastered by an unjust God. I’ll admit it – there
was some of that, but there are two things that you don’t know yet.
First I should tell you that I’ve wanted to be a mother my whole life. I’ve always loved children and have a bit of a nurturing streak. As a lonely only child, I planned on having no less than 6 children – possibly more if I could squeeze out a few sets of twins. We’d live with my husband, Neil Patrick Harris, in a huge farmhouse by the ocean and play blue grass amidst the fireflies every night in the summer. Wrong again. It turns out that I’m not Neil’s type, farmland is seldom by the water and I was born with really messed up ovaries.
I’ll spare you the gory details, but by the time I was 19, I was only averaging 2-3 periods a year. When I was 21 my gynecologist told me that it would be unlikely for me to have children naturally. When I was 25 another specialist told me that it would be unlikely for me to have children ever. Holding my miracle baby – the baby who had almost died, the loss of his eyes seemed like a small price to pay for his existence. I’m pragmatic, what can I say?
Second, I’d been wildly anxious before his diagnosis. In my heart of hearts I knew something was wrong with him, but I couldn’t get anyone to listen. I posses a fertile imagination that’s been fueled with countless books over the years. It’s a blessing I’ve been cursed with. When the pediatrician assured me, ad nauseam, that Gabriel’s eyes were fine, my twisted mind turned to even darker corners. I had invented several possible diseases for my poor little boy, each one more horrifying than the next. One can never be laid to waste by despair that was as heavily marbled with relief as mine was. Only his eyes? Well, damn. That’s no problem. Ray Charles was blind. I’ll teach him early on to stay on the piano and off the smack and he’ll be fine.
I can say this all this casually now. I mentioned that I wasn’t completely devastated. I was, however, mildly insane. One day I’d be convinced that it was only a matter of time before I found an obscure cure on the internet. The next day I’d be sobbing because he wouldn’t be able to drive his date to the Homecoming. I was antagonized by a Ny-Quill commercial that featured a blind chicken and enraged that the only movie adaptation of the Daredevil comics was that Ben Affleck abomination.
The only consistency in my life at that point, was Gabriel. It was almost his first Christmas and he was making unbelievable progress. Now that I knew he couldn’t see, I was able to cater his world to better suit his needs. I replaced his fancy mobile with one that played Mozart. I found him all sorts of cool things to touch. He could still see light, so I lit every available surface in out tiny apartment with fairy lights. I read to him, mostly children’s books but sometimes it was whatever I was reading – Steven King and Vouge Magazine can be very soothing to infants if orated in the appropriate tone of voice. I started verbalizing everything. I think I spoke more words in the first year of his diagnosis than I had in the previous decade.
“Mommy is going to the Fridge. I’m opening the Fridge. I’m reaching inside to get your juice. I’m walking back to you, carrying the juice in my hand. I’m smiling at you and giving you the juice…..”
You get the picture, but he didn’t. I was able to use my lifelong love of words to paint the world for my son. When he was sleeping I did what I do best. I read. I read everything I could about raising a blind child. When I’d finished that I read everything I could about being blind. When I’d finished that I took some time off, read a few trashy romance novels, caught up with Dean Koontz and then started reading everything I could about teaching a blind child.
Gabriel’s father, though our relationship was slowly deteriorating, had no problems being the sole provider in our relationship. I was able to devote all my time to my child. In the darkest moments, when I was terrified for his future, I held him close and told him that everything would be ok. I told him I loved him and would take care of him, over and over again.
My Little Dude made it all so easy. He was, and remains, the sweetest kid. He’d smile with little provocation, started sleeping through the night uncommonly early, he cried so rarely that our neighbors didn’t even know we had a baby. He was growing exponentially, and rolled over on Christmas Eve at 6 months (4 months in preemie time). He was already showing musical awareness, beating out a rhythmic tattoo to Bobby Darrin on his walker. I was still consumed with his condition, but slowly I was starting to own it, to bend it to my will – or maybe I just began to wrap my mind around it.
On Christmas Day 2007, something very strange happened. I experienced something completely new. I woke up that morning and my first thought of the day was not, ‘my baby is blind’, it was, ‘it’s my baby’s first Christmas’. I was healing.
First I should tell you that I’ve wanted to be a mother my whole life. I’ve always loved children and have a bit of a nurturing streak. As a lonely only child, I planned on having no less than 6 children – possibly more if I could squeeze out a few sets of twins. We’d live with my husband, Neil Patrick Harris, in a huge farmhouse by the ocean and play blue grass amidst the fireflies every night in the summer. Wrong again. It turns out that I’m not Neil’s type, farmland is seldom by the water and I was born with really messed up ovaries.
I’ll spare you the gory details, but by the time I was 19, I was only averaging 2-3 periods a year. When I was 21 my gynecologist told me that it would be unlikely for me to have children naturally. When I was 25 another specialist told me that it would be unlikely for me to have children ever. Holding my miracle baby – the baby who had almost died, the loss of his eyes seemed like a small price to pay for his existence. I’m pragmatic, what can I say?
Second, I’d been wildly anxious before his diagnosis. In my heart of hearts I knew something was wrong with him, but I couldn’t get anyone to listen. I posses a fertile imagination that’s been fueled with countless books over the years. It’s a blessing I’ve been cursed with. When the pediatrician assured me, ad nauseam, that Gabriel’s eyes were fine, my twisted mind turned to even darker corners. I had invented several possible diseases for my poor little boy, each one more horrifying than the next. One can never be laid to waste by despair that was as heavily marbled with relief as mine was. Only his eyes? Well, damn. That’s no problem. Ray Charles was blind. I’ll teach him early on to stay on the piano and off the smack and he’ll be fine.
I can say this all this casually now. I mentioned that I wasn’t completely devastated. I was, however, mildly insane. One day I’d be convinced that it was only a matter of time before I found an obscure cure on the internet. The next day I’d be sobbing because he wouldn’t be able to drive his date to the Homecoming. I was antagonized by a Ny-Quill commercial that featured a blind chicken and enraged that the only movie adaptation of the Daredevil comics was that Ben Affleck abomination.
The only consistency in my life at that point, was Gabriel. It was almost his first Christmas and he was making unbelievable progress. Now that I knew he couldn’t see, I was able to cater his world to better suit his needs. I replaced his fancy mobile with one that played Mozart. I found him all sorts of cool things to touch. He could still see light, so I lit every available surface in out tiny apartment with fairy lights. I read to him, mostly children’s books but sometimes it was whatever I was reading – Steven King and Vouge Magazine can be very soothing to infants if orated in the appropriate tone of voice. I started verbalizing everything. I think I spoke more words in the first year of his diagnosis than I had in the previous decade.
“Mommy is going to the Fridge. I’m opening the Fridge. I’m reaching inside to get your juice. I’m walking back to you, carrying the juice in my hand. I’m smiling at you and giving you the juice…..”
You get the picture, but he didn’t. I was able to use my lifelong love of words to paint the world for my son. When he was sleeping I did what I do best. I read. I read everything I could about raising a blind child. When I’d finished that I read everything I could about being blind. When I’d finished that I took some time off, read a few trashy romance novels, caught up with Dean Koontz and then started reading everything I could about teaching a blind child.
Gabriel’s father, though our relationship was slowly deteriorating, had no problems being the sole provider in our relationship. I was able to devote all my time to my child. In the darkest moments, when I was terrified for his future, I held him close and told him that everything would be ok. I told him I loved him and would take care of him, over and over again.
My Little Dude made it all so easy. He was, and remains, the sweetest kid. He’d smile with little provocation, started sleeping through the night uncommonly early, he cried so rarely that our neighbors didn’t even know we had a baby. He was growing exponentially, and rolled over on Christmas Eve at 6 months (4 months in preemie time). He was already showing musical awareness, beating out a rhythmic tattoo to Bobby Darrin on his walker. I was still consumed with his condition, but slowly I was starting to own it, to bend it to my will – or maybe I just began to wrap my mind around it.
On Christmas Day 2007, something very strange happened. I experienced something completely new. I woke up that morning and my first thought of the day was not, ‘my baby is blind’, it was, ‘it’s my baby’s first Christmas’. I was healing.
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