Sunday, May 31, 2009

The Burden, part I

I don't know if I've mentioned it before, but I have a sister a few years below me. She's my only sibling, so in the natural course of things, we'd be very close. The thing is that we're different. Not in the normal sense of having temperaments that naturally cause fights, but in a real way. She has a genetic disorder, leaving her unable to walk, talk, or even see very well.

I know everyone always talks about the amazing things they learn from being the sibling of a special-needs child, and I do feel what they are talking about, but there are times when I wish she could be normal. That I could have fights with her about closet space. That I could help her with her homework. That I could just be a normal girl with a normal family. That I could have known for even one second the simple joy and lack of responsibility of childhood.

But if that can't happen, and at this point in time there is no natural cure (outside the realm of nissim gluyim), I wish that I could always feel the way others say they feel. That I could always feel the inspiration of living with a special neshoma. That it won't bother me when people reject me because of her.

I went through a stage in high school when, while I wasn't actually ashamed of her, nor did I resent her place in my life, I felt ... I don't know how to express it. Like her existence was a burden on me. I thought I was over it, but every so often it rears its ugly head. And I have to deal with it again. And again. And again. And I'll have to keep dealing with it forever (she should live ad meiah v'esrim). I just daven that Hashem will give me the strength to be able to love her as she needs and deserves to be loved and treat her like the very special person she is.


staying afloat said...

I have never met a person who feels the inspiration of it all of the time. Most people will tell you about the good stuff when they talk to you because they want to stay bright, both to you and to themselves. But in my mothers group for moms of special needs kids, we have a rule that nobody can say, "Hashem gave you the challenge because you're special enough to handle it", etc., and in that group we kvetch.

One mother with a daughter with Downs has spent time mourning the fact that her older daughter doesn't have a sister/playmate/confidant.

My own special needs kid is high-functioning enough to interact, but there are still many challenges for my other kids. I'm currently starting a support group for siblings of special needs kids, but I don't know of any for older siblings like you. Wherever you live, maybe there's a frum agency that services special needs families that might be able to hook you up with someone in your position who can listen to and understand the pain, and you can give each other chizuk...

I wish you koach.

chavamf said...

thanks for that. I really do have a lot of support. I'm not usually so down, but every so often it hits me again. I do love and appreciate her - usually. I try to stay positive and think of all the inspirational stuff. That's just a bit hard to do while changing a 14 y/o's diaper or shlepping her from the stroller to her chair

Something Different said...

Chavamf, I hear you. It isn't easy. Obviously, it is very different for you, as the special needs people I deal with are not family members, but still, I can only imagine how hard it is for you. And how special.
Hashem is watching and He will repay you for all this.

itsagift said...

I never thought about what it is like to have a sibling with special needs! Wow! I really respect you for dealing with this in such a positive way!
It must be quite a challenge to have a younger sibling with the needs that you describe and to have to deal with it on a daily basis...
Remember that everything in life is a test and each person is given their own pack of challenges with the tools to be able to go through life and grow through their experiences.
Although it may not be easy to hear right now, one thing that gave me chizuk in the tough times is that through going through painful/difficult moments, you will be able to understand and help other people going through similar experiences. And it feels soo good to be able to strengthen others!! You will feel stronger and so will those that you choose to strengthen!!
Hatzlacha and may Hashem give you lots of extra strength and the ability to remain positive always!

Bas~Melech said...

I know you've heard it before, but I just have to say how very normal that feeling is, and that it doesn't at all take away from the greatness/inspiration/whatever of what you do. With every difficulty in life comes the struggle to accept the rosier picture that just isn't. I HIGHLY doubt that there is anyone who really feels uplifted and inspired all the time throughout the difficulties -- they just keep thinking of it to help keep them going...

True, I wouldn't actually know because I've never had this particular challenge. But I think there are certain common threads that run between every kind of difficulty; when we see those instead of the differences then we can all learn from and support each other.

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