Monday, January 14, 2013

Special Siblings

There's this video floating around Facebook, maybe you've seen it.  It's about these 2 brothers winning the Sports Kids of the Year award.  One boy is 9, and he does triathlons while towing his younger brother who has CP.  This isn't a new concept, racing while towing someone disabled, but this is the first time I've seen it be siblings...siblings under 10 years old.

And in the interview the older brother just talks about how much his brother loves to ride in the cart while they race.  He says, "if people raced more with people who can't walk or talk or have autism, it might open the eyes of those who don't really care about it."  It's all about him and his brother, it's never just him.  He says, "we can always do anything."

This video got me thinking about siblings.  Well, I think about siblings a lot, but it inspired me to write something about siblings.  It's special to have a brother or a sister, especially one who is disabled.  I think the kids who have disabled siblings are wired differently.  They are brought up to care more, to see things differently, to be more patient, and to want to help change the world.  They want to make the world a better place for their disabled brother or sister.

I will never forget this summer when I parked and was getting Sadie out of the car.  We were going to go have PT in the pool.  And there was a man who was some kind of city worker or a cable guy or something parked next to us.  He must have just been enjoying his lunch break in his van somewhere in the shade.  He watched me haul Sadie out of my little Volkswagen, and he rolled down the window to tell me that I was doing a great job.  He told me he had a sister like Sadie when he was younger.  She had passed away when she was 17.  Then he got this twinkle in his eye when he told me that he just remembers how much his mom loved her and was so good to her.  He was probably in his 40s, but he had fond memories of his sister and the love in his home when he was younger.

I think about this guy a lot.  I try to imagine what Ezra will be like when he's an adult.  Will he someday see a mom getting her disabled child out of the car?  Will he see a child in a wheelchair at a restaurant?  Will he open the door for a mom who is struggling to push her grocery cart and push her child in a wheelchair?  And will he speak fondly of growing up with his sister?  Will he connect with that mom by telling her about his mom?  I really want Ezra to grow up compassionate and patient and accepting of people of all abilities.

I have a friend whose daughter has mitochondrial disease.  Her daughter is in a wheelchair and has limited abilities for movement and communication.  She can talk, but it's slow and hard to understand.  She's tube fed and not potty trained.  And she has a younger brother.  This friend of mine told a story on Facebook recently of how her son wanted a penny for the wishing fountain, and after he threw it in and made his wish, he told his mom that he wished for his sister to not have mitochondrial disease.  He said he can't wait for it to come true.  THAT was what he wished for.  Not for a new Wii or a special toy for himself, but for his sister to be well and not struggle. 

I have no words, but that I hope and pray that my boy grows up to be like that one.

I have another friend whose daughter is a couple of years older than her brother with special needs.  He is undiagnosed, but is nonverbal, has some CP, and can generally be hard to handle because of aggressive behaviors.  But his sister, she loves him so much.  She goes with her mom when they take him out in public and she helps manage him so their mom doesn't have to do it alone.  And she's getting old enough now that she will stay home alone with him.  She even had her most recent portraits taken wearing a t-shirt exclaiming that she is a PROUD sister of a child with special needs.  How many 11 or 12-year-old girls are proud to push their screaming 9-year-old brother around the mall with everybody staring at her?  She is something special.

I can only hope that Ezra, and our third child in the future, end up like these siblings.  As parents of special needs children, we talk about how amazing our children are.  They overcome so much, and struggle daily with things we can only imagine.  We are proud of them, they do so much.  And yet, it's our typical children who shine especially bright.  I can already tell that Ezra love his sister.  I only hope that that love grows bigger and bigger as they get older.  Maybe they'll even win an award someday.

And in case you want to see that video about Caden and Conner Long, you can click here.

1 comment:

  1. I'm reading this after doing a night feed with my 14-week-old son. He has HIE grade 3 and CP - and who knows what difficulties to face in the future. I just wanted to say that this is a beautiful post that brought tears to my eyes. We're at the beginning of our journey and I hope by the time Ted is 3, that we're in as positive a space as you are. This also makes me realise that it is possible to have more kids! Thanks for your blog, I'm going to have a good read of the previous posts. Much love to your gorgeous family - you're doing a great job!