Posted by: halliesklar | September 5, 2012

Bouncing back

I have a mini essay on Geoffrey’s surprise diagnosis of albinism last year in the September issue of Health magazine. You can read it here:

http://news.health.com/2012/08/17/how-to-bounce-back-from-a-childs-health-crisis/

It’s a little strange to read it and think about all I went through when he was first diagnosed, and how amazingly well he is doing now. And I have to chuckle a bit at the irony of the article, which is all about resilience. After everything we’ve gone through the last few years, I’m a master.

Thanks for everyone’s well wishes about my father. Dad is doing better. He is still in the hospital. We still don’t know what will happen or how much time he has left, but we are determined to make the most of it.

In the meantime, I have my beautiful kids to console me. How lucky am I to be their mother?

Last Friday night, we took all three kids to the local St. Leo’s fair. We went last year, but they seemed too young for the rides. This year, Teddy and Jo Jo went on a bunch, and as I watched them, Teddy’s arm protectively encircled around Jo Jo, it hit me how grown up they looked. My two eldest are preschoolers.

Image

Geoffrey wanted to go on all the rides himself. He kept running away from me and darting up to the gates, shaking them and babbling madly. He does this thing now where he races away from me, laughing, and then runs right back to me, rubbing his face against my legs and murmuring mama.

People turn to look at him, wherever he goes. I don’t think it’s necessarily because they realize he has albinism, but more that they marvel at his white-gold hair and creamy skin.

Image

A woman stopped me later that evening, when Geoffrey was so overtired he was running around in circles and then clinging to my legs. “Mama, mwww, mwww,” he said, blowing kisses into my calves, and the woman looked at him and sighed. “He’s the spitting image of my son at that age,” she said wistfully, and then, “I just dropped him off at college.”

We just looked at each other. I could tell she was fighting back tears. “You must miss him,” I said.

“Time goes by so fast,” she said briskly. “Just enjoy every minute of him.”

She’s right. As much as I sit here and cry, and mourn the fact that my father will most likely never be well enough to take my two boys to their first Red Sox game, or be present at any of my kids’ bar mitzvahs, I also know we have to make the most of the time he has left.

And I need to make the most of the time I have with my three little ones.

About these ads

Responses

  1. HI Hallie:
    I was very moved at this article. You are an amazing mother.
    Hope your Dad will hold on some more. He is a special man.
    I am doing well, David speaks to Jamie so you probably know any news.
    Summer is running away. It’s still hot in Montreal. The kids are adorable.
    I want to wish you a happy and healthy New Year.
    Love, Bess

    • Hope to visit you sometime this fall. The kids are wonderful.
      They do grow up fast. Time runs away.
      Love, Bess

  2. Hi Halley, I’m praying for your father. I think of him a lot as I remember him with the kids and how he reacted with them, great man! Your visions article is great and I’d like you to save the Health magazine for me,love, granpa David Date: Wed, 5 Sep 2012 17:42:51 +0000 To: sklardentist@hotmail.com

  3. My middle daughter was recently “re-diagnosed” with ocultaneous albinism. I say “re-diagnosed” because we’d taken her for testing when she was 3, after moving to a bigger city that had actual specialists, and her {now ex} pediatrician had incorrectly told us she didn’t have albinism. In the last year she’s been diagnosed with about two dozen things & while she was admitted to the hospital the albinism came back up.

    My two youngest daughters {of which she’s the older} are both bi-racial. So I’d dealt for years & years with questions of paternity, as I’m caucasian & their father is bi-racial. Our older daughter didn’t even have her first freckle until she was 4 1/2, and only then because her dads side of the family didn’t believe me about how important sunscreen is for her. She’s very, very pale and has really light blonde hair, but with these amazing strawberry blonde highlights. Some days, her hair looks red, most days it just looks golden, but it’s kinky curly. One might say “nappy”.

    She’s also very near-sighted in one eye & very far-sighted in the other, with her vision slowly but steadily declining since her first pair of glasses at age 3. A number of her conditions are believed to be related to her albinism. She’d been diagnosed with Cyclic Vomiting Syndrom {aka Abdominal Migraines}, Gastric Reflux Disease & HyperAcidity since she was very young.

    My point? :) Just that I know a little of what you’re facing, a little of what you’ll need to do for your child, the good & the bad. If you ever want a little perspective on just how lucky our kids are to have been born here, to us, watch the ‘Albino Witchcraft Murders’ documentary by the BBC. I watched it by myself & then with my daughters & some of their friends. You’ll definitely want to wait before letting your little ones watch it. You can ‘friend’ Josephat Torner on Facebook & donate to the foundation he’s set up {we’re sending sunscreen & sunglasses as we can}.

    If you ever want a penpal for your son, my daughter, who’s 13, would love to mentor another child with albinism. She’s learning to stand up for herself and educate her fellow students, though we did have to change her school as the last one wasn’t dealing with the racist bullying appropriately.

    I don’t know if it’s the albinism, her other conditions, or just bad luck, but one thing I want other parents to know: Every year or two one of the doctors decides she must have a brain tumor. Seriously. Every year or so they decide that must be part of the problem, always for a different reason, and so we go to new specialists, she gets CT Scans & MRI’s with & without contrast, we spend about 2 months doing tests & waiting for results, and every time, they find nothing. So, while it’s certainly serious, and scares the snot out of us each time, keep it in mind if the same happens to you. And get second, third or even fourth opinions when something doesn’t seem right to you. I’ve had to change doctors & even fight with her father to get her medical care. I’ve been told I’m imagining things, and each time, I was right, and I’d really, really rather have been wrong. But if I hadn’t trusted my instincts, she wouldn’t be with us anymore.

    Anyway, sorry for the length, your blog just touched a nerve, in a good, “I identify with her!” kind of way & this was my response. :)


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

Follow

Get every new post delivered to your Inbox.

Join 616 other followers

%d bloggers like this: