Everything Else Archives - Page 2 of 2 - Parent of a Child with Albinism

Laugh It Off

Sometimes the only way for me to deal with things or to get through a situation is to add a little humor. And thats OK… You need too be able to laugh it off once in a while. It’s kind of therapeutic for me and sometimes keeps me from bursting into tears. For example, when Lyra got her outfit made out of UV protective material for her birthday, I said “Look, she got a HAZMAT suit” or when I say she is like a pinball when she walks around bumping into things. However I would have very likely become defensive if someone else would have made those comments first. Of course she is still a baby and I will be careful not to say things like this when she is old enough to understand. You can see a pic of the outfit below.
Other times, laughing it off means I need to make a sarcastic comment in response to someones question thus preventing me from blowing up or smacking them. Generally the questions and comments are sincere, but occasionally there are the questions that are just plain stupid. For example, on Sunday afternoon we were at a restaurant and I had Lyra in the bathroom washing her hands. A young adult came up to us, with eyes WIDE OPEN, and asked, “Is that her REAL hair color?” I replied with something I read on the NOAH forum and said… “No, we hold her up by her ankles and dunk her in bleach once a week.” Then I walked out of the bathroom. Seriously, why would her hair NOT be her natural hair color.
Other times I just get bored with answering the same old question the same old way. I posted a question on the NOAH forum looking for some variety in how to respond to “Where did she get all that white hair?” Here are some of the suggestions I got from various NOAH members:

It is all in the genes!
From God.
I drank alot of milk when I was pregnant.
The supermarket–aisle #6, Loreal color #35, $10.00 and you too can have the same color!
It was “special order.”
From Santa Clause.
From the mailman.

Some of those aren’t really untrue, just a little more interesting. Others are obviously just a bunch of baloney. I’m not condoning lying. Sometimes I just gotta make it through the day.

Here is a link to a section on another parents website called “Dumb Things People Say.” It really cheered me up when I first read it when Lyra was only a couple of months old.
Dumb Things People Say

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Welcome to Holland

I found this beautiful story from a link on another parent’s website. Thank you Cassandra. It’s another way of looking at or describing what it’s like for parents who have a child who is different in some way. To me, it is also a reminder that you never know what God has planned for you.

_________________________________________________________________

WELCOME TO HOLLAND

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley.
All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Lyra… “Cover Girl”

My baby girl is on the cover of a magazine!!! I wrote an article for the latest issue of Albinism Insight, a quarterly magazine published by NOAH. I had included some pictures to go with the article, but her picture being on the cover was a complete surprise. We were all very excited when we saw it. The article is basically a condensed version of the “history” section of this site. I couldn’t come up with a title myself. The magazine editor, Kelsey Thompson, titled it, “Life with Lyra: A new mom reflects on her first year as the parent of a child with albinism.” I was very pleased with how it turned out, expecially since I’m not much of a writer. I barely passed most of my english classes in high school and college. 😛
The entire issue was wonderful and had a lot of really great articles.

We are all just so proud of Lyra!