Posted by: Hallie Levine | May 22, 2012

It’s My Party and I’ll Cry If I Want To

Someone had his first birthday last Wednesday. We celebrated with a party on Saturday.

With his future prom date, Evie.

I’ve been a bit delayed with this post, mainly because I haven’t been sure what to say. My baby’s first birthday is a moment I’d been looking forward to—and dreading—for the last few weeks. Looking forward of course to celebrating the fact that my little guy has turned one, that he’s morphing into a toddler who walks holding my hands and drinks from a straw like a big boy and grins at me and says “ma ma.” But it’s sad, too, because Geoffrey is my last and watching him reach all his baby milestones this past year has been bittersweet. I’ll never get to do it again.

I keep thinking back to the day he was born, when he was placed in my arms and I watched as he yawned and stretched and then latched on, sleepily nursing. I remember watching Glee that night in the hospital room, cuddling Geoffrey in my arms and bawling because the episode showcased the death of Jean, the beloved sister of Sue (Jane Lynch) who had Down Syndrome. Geoffrey was out like a light, peacefully sleeping in his newborn trance, and I remember looking down at him and wondering if he would love Jo Jo as much as Sue seemed to love Jean, and if he would have to face a similar situation—and experience the same grief—in thirty or forty odd years.

I remember nursing him those first few weeks after he came home from the hospital, and how he’d fall asleep in my arms and we’d stay like that, snug and warm in the bed, for the rest of the night. I remember when we drove up to Montreal and stopped for lunch and a strange woman came over and exclaimed to me, “He’s an old soul.” I remember marveling at how placid he was, how amazingly serene, and how he could calm himself simply by sucking on his fingers. I remember noticing when he was about ten weeks old that his eyes seemed to move back and forth, especially when he was tired and ready for a nap. I remember the morning I snuck up to his bassinet while he gurgled happily and stood there silently, waiting for him to see me and smile, and how nothing happened until he heard my voice and beamed a huge grin. I remember feeling confused, and concerned, but also dismissing it as the concerns of an over anxious, over wrought, over tired mom.

I remember going to the eye doctor and being told Geoffrey had a form of albinism and would most likely be legally blind. I remember my husband asking increduously, “what does that mean? Does that mean he’ll need to read Braille? Does that mean he’ll need a seeing eye dog?” and the doctor just shaking his head and saying he didn’t know. I remember screaming in the parking lot, just losing, howling like a madwoman with tears running down my face, wondering how we could handle anything more after what we’d been through with Jo Jo.

But then I remember going home, and listening to a message from our pediatrician telling us everything was going to be fine, that he was very optimistic and that he had another little boy in his practice with albinism who was doing great. I remember taking Geoffrey to another eye doctor the very next day, one who had much more experience with albinism, and I remember him reassuring me that Geoffrey could indeed see, and that it would just take time for his vision to come in. I remember talking to the mother of a 16 year old boy with albinism who told me to not worry, to stop shaking rattles in front of my baby’s face and to simply spend some time cuddling and playing with him. I remember the positive blog comments I received from other adults with albinism, who wanted to just reach out and reassure me that Geoffrey would lead an exceptional life. I remember the college professor with albanism who emailed me to not treat Geoffrey any differently, to just “let a kid be a kid.”

Deep thoughts

A lot of people have emailed me wanting to know about Geoffrey and how he’s doing on all levels, and I have to say, he’s doing great. He’s right where he needs to be with most of his milestones, although he does have some delays with hand/eye coordination, which is to be expected due to his less than stellar vision and his nystagmus (that means his eyes go back and forth). We had a big scare in January when we took him to a pediatric geneticist who was convinced he had a form of Hermansky Pudlak Syndrome, a blood platelet disorder that can be associated with certain forms of albinism, especially among Jews, but he didn’t. Which just shows you at the end of the day how much the so-called experts seem to know.

I get asked all the time what Geoffrey’s vision prognosis is, but honestly, we still don’t know. Our local eye doctor is very optimistic. He seems to see a lot, but he’s also a very bright kid and has great adaptive skills, so he may just be using his little baby brain creatively to maximize what he has. And I have to say, it doesn’t really matter to me at this point whether his corrected vision will turn out to be 20/40 or 20/400. We’re not doing anything differently at this point. He has occupational therapy once a week and sees a teacher for the visually impaired twice a month, and other than that we’re out and about doing business as usual.

Geoffrey’s my last baby, and I made a conscious decision a few days after the diagnosis that I was going to just savor every last gurgly moment and not worry so much about things I can’t control, like his eyesight. He’s getting the therapy he needs to thrive, and I’d rather spend my free time “chatting” with him or playing peek-a-boo or helping him knock over block towers than obsessing over whether or not his vision will be good enough to allow him to drive. Besides, in twenty years, cars will be driving themselves anyway.

We had a great birthday celebration, although a certain someone got a little overtired towards the end (that’s what happens when you have a 7 pm bedtime) and cried while gumming down his birthday cake.

But hey, it’s his party and he can cry if he wants too.

Thankfully, we didn’t have a repeat of Jo Jo’s third birthday party, when the dog ate half the cake, but Ivry lurked around the high chair, just waiting for Geoffrey to throw some morsels her way. She looks so angelic, but you can just see her little doggy brain plotting.

Happy birthday, Geoffrey Solomon Sklar. We all love you very, very much.

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Responses

  1. HE, ALL 3, ARE BEAUTIFUL, GRANPA D

  2. Love the story of his first year and your savoring each moment- he’s a dude- sorry I missed the party! Julie

  3. I had to search to find the update after the post where he’d been tested. We went through this scare last year too. Time after time, they keep mentioning “life-span limited” diagnoses. Cuz the life-threatening ones they’ve confirmed aren’t enough?

    I’m really, really glad your little guy doesn’t have HPS, I try to research things so I know what to ask whenever the specialists bring something up. Also, for when the specialists shrug and go “I dunno”, prior to getting a new team of doctors together, there were more than a couple diagnoses that I had to suggest to /them/ before they checked & decided it was correct.

    My oldest is 19, then 13 & 9, and I wish someone had warned me how much faster & faster the time goes. You get all kinds of advice, and I definitely did try to embrace all the little moments with the girls as they happened, but the time just gets away from you. Of all the possibilities, if I had a Time Machine, I’d use it to revisit my girls somehow. To peek & watch as I learned to frenchbraid hair for the first time with my oldest, or watch my middle daughter have Tea Parties with her imaginary friends, or the way the youngest woke up from sleeping LAUGHING each time. Seriously, what baby does that? And she slept through the night, when my middle daughter hadn’t slept through a single night in her entire 3 1/2 years, I bring home this baby from the hospital who sleeps through the night, naps & wakes up with a chuckle.

    No matter how long we have with our kids, it’ll never be long enough. All we can do is soak them up.


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