Growing Up Special

Thoughts, ramblings, and encouragement from a special need sibling to the world

Of life and school buses March 31, 2011

Filed under: Life — brittanyk1 @ 10:01 pm
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All my memories of riding a school bus come before fifth grade, since I was schooled at home after that particular year.  But it’s amazing how many memories there are in those first few years.  One very vivid image in my mind is riding the bus with Alyssa.

 

Of course, those of you who have been on school buses know the younger kids sit up front and it tends to progress backwards according to age.  This means that kindergartners sit in front and junior high/high schoolers are in the back.  Well, Alyssa never paid any attention to such unspoken social norms, so almost every day after school, we would climb into the bus and she would march right to the back, where she would find some junior high or high school boy and promptly climb into his lap.

 

What I remember most about this daily pattern is that the boys at the back of the bus were not very nice. In fact, you might say they were bullies.  None of MY friends (that is, 2nd/3rd graders and younger) liked being around those boys.  Except for Alyssa.

 

Since she was always at the back of the bus, I would sometimes find myself compelled to journey to the far reaches of the bus to see if she was okay.  I remember making one nerve-wracking trip to find those boys trying to feed my sister empty candy wrappers.  For a moment, nerves were a thing of the past as I furiously lectured them and marched back to the front of the bus with Alyssa in tow.

 

But what I now remember is the fact that Alyssa’s persistent, unchanging, unconditional love for those boys never changed.  Nothing they did could faze her.  She didn’t care if they fed her candy wrappers.  Every day, she walked back there, climbed into their laps, and just hugged and kissed them all the way home.

 

And over time, something profound happened.

 

At the end of the year, those bullies weren’t bullies anymore.

 

That’s another one of the many beautiful things about special siblings.  They teach us the meaning of unconditional love in the only way that we could truly grasp it’s full meaning.

 

By demonstrating unconditional love to every person they meet, every day of their lives.

 

Beautiful March 27, 2011

Filed under: Life — brittanyk1 @ 9:39 pm
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When all is said and done…

 

 

Alyssa

 

At Christmas

 

 

Special is beautiful.

 

 

 

 

 

 

World Down Syndrome Day 2011 March 21, 2011

Filed under: Down Syndrome — brittanyk1 @ 8:41 pm
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If I had put a bit more thought into it, I would have asked someone who has a sibling with Down Syndrome to write a post for today.  Perhaps there is someone who would like to add their thoughts to mine… if so, let me know!

 

Today, March 21st, is World Down Syndrome Day.  This date (3/21) has special significance because it “represents the 3 copies of chromosome 21, which is unique to people with Down Syndrome.”  It also has personal significance for me because of all the wonderful people with Down Syndrome that I have known.  In case you don’t know, these are very special people.  I’ve have the privilege of babysitting little ones, meeting or learning about so many loving individuals, and sponsoring a beautiful little boy from Romania towards his adoption—all of whom had Down Syndrome.

 

I think these special individuals grab my heart because they often show us God’s love.   No matter what you do, they still love you.  Nothing you say can make them want to avoid you.  On your worst day, they will still come to you and put out their arms for a hug.  Their love does not depend on who you are, what you do, or how you act.  Instead, you are blessed by their love every moment… even and especially if you feel that you don’t deserve it.

 

I sometimes think that is the reason God puts special people on this earth.  Without them, we would have a much harder time understanding God’s love for us… and how we ought to love each other.

 

So many thoughts, so little time! March 19, 2011

Filed under: Special Needs Resources — brittanyk1 @ 7:52 am
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I have so many ideas for this blog, but not enough time to make them all happen!  I’d love to have book reviews, resource recommendations, stories and encouragement, guest posts, “Memory Mondays,” and so much more.  I’m realizing these things may be a bit slower at coming than I would have liked.  But I’m excited, because blogging means I have all the time in the world to do those things.  🙂

 

I do want to mention something more ‘educational’ today, as that is one of my goals with this blog and I have not yet done anything about it.  When I first had the idea of this blog, I started looking for and reading books about what it means to ‘grow up special.’

 

And I was amazed.

 

Do you know how many amazing books, websites, groups, and other resources are available to support siblings who live with special needs in their home?  I sure didn’t!  I think it may be a very well-kept secret in the special needs community.  Or perhaps just a secret well-kept from me.

 

Anyway, one of the resources I stumbled about is the Sibling Support Project.  They seem to have everything, from essays to workshops to books to local groups to trainings to online forums, and so much more.  I’m eager to find out more and share what I learn with you!

 

So I have to ask. Am I the only one who didn’t know about these great resources?  If so, what is your favorite sibling support resource?

 

Disclaimer: my posting about various resources does not in any way mean I wholeheartedly endorse everything you will find there. 🙂

 

Sisters March 16, 2011

Filed under: Life,Special Ramblings — brittanyk1 @ 10:01 pm
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You may have seen or heard the saying… “Sisters make the best friends.”  It seems to be generally accepted that there is nothing better than having a built-in best friend; someone who will lend a listening ear and fill yours with crazy stories; someone you can with stay up late with or who shares your random adventures; someone who knows you inside and out—better than you know yourself.

 

Sometimes I wish I knew exactly what that was like.

 

My sister is amazing and hilarious and crazy and weird and random and fun.  She is awesome and she IS a friend.  But when your sister is special, it’s not quite the same.

 

Sometimes I just wish for normal.  To be able to bake cookies together.  Travel the world (or at least a couple states) with her.  Go see a fun movie together.  Have late night talks.  Go hang out with friends.

 

Maybe you can relate.

 

But my life’s not normal.  And you know what?  The more I think about it, the more it doesn’t matter.  We can still bake cookies if we wanted too.  Sure, it’s more like managing a tornado than anything else, but we laugh and I learn patience.  I might not have chosen to see “Piglet’s Big Movie” in the theaters, but hey! It’s still sister time.  And late night talks do happen.  They just might center on every single thing she did that day or the movie she’s going to get at the library instead of boys and fashion.   And one of these days, we are going to take a trip together (something not medical related).  We’ll have a blast and she’ll teach me to wonder at the small things of life.

 

Do I sometimes wish for normal?  Absolutely.  But if I had it, I don’t think I’d appreciate it nearly as much as the beautiful, crazy, abnormal life that I have now.

 

And now that I think about… sometimes we even DO talk about boys.  🙂

 

In the beginning… March 14, 2011

Filed under: Life,Special Ramblings — brittanyk1 @ 8:42 pm

For us, the beginning started on July 5th, 1991, when an amazing, beautiful, loving special needs child made her way to this earth.  I was just under 2 years old, so I don’t remember what life was like without my special sibling.  It must have been incredibly dull.  🙂

I’ve grown up hearing the story of when my parents first knew something was wrong and all that followed.  She was just 17 months old.

But over the years, details have come together, God has sent people to interpret those details, and as a result, the story has changed.  So I’m no longer entirely certain of the story.  Now that I think of it, probably no one really knows except God.   And I think… He didn’t need us to understand all the details when He sent her to us.  Instead, He just saw a family who could trust Him for the love and strength they would need.  And a family who desperately needed the tremendous, unconditional love of a special child to show them God in the hard times.  (And to give them some hard times!)

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In the beginning of this blog, there will probably just be a lot of getting things out there.  Lots of posts to see if anyone else is out there and can relate.  Once I get some things off my chest and my mind, I’ll hopefully be able to start more on the educational goal of this blog.  For now, this is a trip down memory lane.  And at the end of the trip, we’ll be able to look back and see how the faithfulness of God paved the way.

 

Why I Write March 9, 2011

Filed under: Life,Special Ramblings — brittanyk1 @ 6:17 pm
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For 20 years, I lived with my special sibling.  Most of the time, we shared a room.  Or a bed.  (Whether I liked it or not).  😉  Now I live and work in Texas while she lives in Colorado.  And I miss her.  Recently, I spent hours telling friends about life with Alyssa.  Then I thought, “Why not tell others?”  Then, “Why not connect with others?”

Special siblings live in a special world.  We know things that no one else does.  We hurt like no one else.  We laugh hysterically like no one else.  We know crazy medical terms and experience teenage tantrums.  We know the ups and downs, the best and the worst.  And in spite of it all, we wouldn’t trade it for the world.  (Most of the time). But after all, we’re special… because we have those special people in our lives.

So you (and me) are the reasons I write.

I write to remember.  I love my special sister and now I’m no longer with her.  I want to remember the good, the bad, the downright terrible, and the absolutely hilarious.

I write to connect.  I figure there must  be others out there who relate on the same level.  Why not talk?  It might save hours of dumping on unsuspecting friends (though I love you for letting me!)

I write to encourage.  I don’t want to end up just sharing similar experiences.  Let’s be encouraging!  Let’s be real, but focus on the good.  Let’s hurt, but heal.  Let’s tell the world about what it means to be a special sibling.

Finally, I write to educate.  To educate myself by continuing to learn about special needs individuals and the unique world that is their life, their family, their community.   To educate other special siblings.  Let’s learn together how to thrive-both for us and our special needs sibling.  To educate parents about what it means for their children to have a special sibling.  And to educate others.  I don’t know if anyone outside the special needs community really knows what it means to have a special sibling.  I want you to know how you can support special siblings and their families through the trials and the blessings.

So that’s why I write. I hope you’re interested.  I know I am.  I want to get my thoughts out and if they never go any further, that’s ok.  But I hope they do.  I hope I can connect, encourage, and educate others to love what we are.  Special siblings.

After all, this is our life.

Let’s embrace it.