Dominick and Rebekah Archives - Parent of a Child with Albinism

Lately I’ve been thinking about why I created the category on this site called Dominick and Rebekah. At the same time, I’ve been thinking about or feeling like lately I’ve been spending an enormous amount of my time focused on Lyra’s needs and neglecting the needs of Dominick and Rebekah. Have they noticed? I’m sure they have. A couple of friends and family members even questioned me about the time I’ve been spending on Lyra compared to my other two. How has it affected them? I have no clue, at least right at this moment. Apparently I’ve been too busy to notice, and that’s a problem.

So this is the type of post that would fall under the category Dominick and Rebekah. How does having a child with albinism affect the lives of his/her siblings both in positive ways and in negative ways?

Earlier this week, an interesting post popped up in my blog reader from a blog I recently subscribed to, Parenting Special Needs on About.com. The post was entitled: What Siblings Would Like Parents to Know. I think it was exactly what I needed to read and exactly when I needed to read it. A couple of things I read in it really jumped out at me.
The first, was that siblings of a child with special needs will be in the life of that child longer than anyone else. Dominick and Rebekah will have a relationship with their sister long after I’m gone. What kind of relationship do I want that to be? Of course I want it to be a positive relationship. I want them all to be close, and to love and care for each other. The last thing I want to do is cause Dominick or Rebekah to feel resentment. What if I’ve already started to do that?

The other point in the article that jumped out at me was this: “One child’s special needs should not overshadow another’s achievements and milestones.” This made me think back to a couple of weeks ago. Dominick turned 6 on January 31st and we had a birthday party for him the following weekend. However, because I didn’t bother to send out the invitations until a week before the party, only 1 of his friends showed up at the party. He didn’t seem to mind, and he had a blast with his one friend, but I’m sure at some point he thought about it and was a little sad. It was MY fault, but who would Dominick blame…me…or Lyra?

I know this is just one experience/situation and ONE experience doesn’t make or break a relationship. I may be reading more into it, but at the very least, it’s been a wake-up call. I need to pay better attention to how I’m spending time with my children and how equally. I need to remind myself that I as I raise my children, I am laying the foundation for their evolving relationship as siblings and ask myself if I want that relationship to be positive or negative.

Here are a couple of resources I found related to the subject of siblings of children with special needs:

The Sibling Support Project

Children with Disabilities: Understanding Sibling Issues

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Learning from Bekah

I am just like Rebekah and Rebekah is just like me. She teaches me. I see her…and then I can acknowledge and understand things about myself.
I hope she learns as much from me.
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I wish I had the motivation and thought I have at 3AM…at 3PM instead.

Rebekah

My daughter Rebekah is 11 years old. I have a unique and special relationship with her that different than my relationship with Dominick and Lyra. Part of this is because I was very young when I had her and in many ways we grew up together. Consequently, I am quite protective of her and cautious in my decision making with her. Another reason we have this close relationship is because we are so very much alike, in our behaviors, attitudes, and even looks. Sometimes its as if I’ve made a little clone of myself. This is frightening because I look back on mistakes I’ve made and don’t want her to repeat them.
Like me, she is a worrier. One thing she got from her dad is her intelligence. Rebekah is gifted. She thinks in ways I will never understand. These to traits combined really affect her relationship with her sister Lyra. She wants to know everything she can about albinism and how it will affect Lyra. She wants to learn braille and about the anatomy of eye. If we can’t answer her questions, she’ll look it up. She worries about the future and about all of the what ifs that I’ve fought so hard not to worry about. She’s is protective of Lyra and wants to be able to answer other people’s questions. I know she loves her baby sister very much and I think the two of them will have a great relationship despite the 10+ year age gap.

Dominick

Dominick is 5 years old. Dominick is my sweet baby boy, definitely a mama’s boy. He is laid back and untroubled, witty and random. Until recently he hasn’t really asked questions related to Lyra’s albinism. When she was born, we talked to him about it, but not in great detail. He was 4, so he didn’t really understand what it all meant. He knows to help keep the sun out of Lyra’s eyes and that she has teachers come work with her at home and she doesn’t see as well as he does, but he’s never asked why. I’m sure everything has affected him and his behavior to some degree, but not in obvious ways. He’s just the type of person that doesn’t worry about things. He gets that from his daddy. I’m so jealous. I take all of their worry, and then some.

The other day, Dominick noticed Lyra’s nystagmus. He was truly impressed by the “trick” that she could do with her eyes. He wished he could do it. He was so cute. He thought the eye twitching was a voluntary movement. I tried to tell him that Lyra wasn’t really doing anything, that her eyes did it on their own, but no way. He was convinced it was her cool trick and he was going to learn how to do it too.

Lyra’s teacher recommended, in the future, tell him that her eyes just work differently than ours work.