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The Reluctant Heroes.


Nope. 
It's not my special needs kiddo who is the reluctant hero. It's not us, the parents.
It's not the generous and compassionate friends, extended family, teachers, therapists or the doctors, though they all are heroes of course, but they are not the ones I'm thinking about today. It's not Batman.
Today it's them. 
The siblings of special needs kids.



Most of us didn't sign up for the role of a special needs parent though the majority of us have embraced it whole heartedly and if pressed, will admit to not wanting it any other way if it means even loosing one atom of what makes our children who they are.

Our other children though? The neuro-typical kids who are often left standing in the background: they are my reluctant and grudging heroes. We've all seen and read the articles showing those saintly sibs who do amazing feats for their disabled brothers or sisters. Wow, everyone remarks, how special that they are so generous and loving in a tough situation. To tell you the truth, I hate the tone of the media in those situations as if those kids really are saints for doing what they do to their poor, pitiful, and perhaps undeserving siblings? Really? How come we don't oo and ah over a neuro-typical sibling helping their perfectly normal brother or sister win a race? What's the deal? Because I think that in their minds, those normal kids with their "special sibs" that is exactly what they are doing. Kids don't really dwell on what's normal and what's not as adults do.

They do dwell however, on the fact that they most certainly and unequivocally did not sign up for this.
My daughter often proclaims loud and clear; "it's not fair!" It's not fair that Leo gets more attention than her. It's not fair that she has to watch the boring kiddie shows because of Leo. It's not fair that Leo gets to take his bath first. It's not fair that Leo's school is short and mostly play time with therapists, and it totally isn't fair when Leo gets sick or has a seizure and everything, including her, gets put on the back burner, sometimes for weeks (remember last winter?).
And yet.
And yet she will play with him for hours, rough housing and playing boy games with trucks, except for those times she dresses him up in princess clothes. 
And yet. 
When we were all so so worried about the trauma and possible damage to her when presented with a scarily deformed baby brother, but we were put to shame by her peaceful acceptance of him, just as he was. 



And she is the one whom he will miss the most during the day, even though when we are dropping her off at school he will shout as she jumps out of the car "goodbye sweetie!" (Leo always looks on the bright side.)
And yet they will also fight like cats and dogs sometimes over the last cracker. In the car I've had to pile stuff between the two car seats so that she couldn't take swipes at him when he got too "loud and annoying!"
So tell me how all that stuff is any different then regular sibs? It all sounds totally familiar to me. I know my brother and I fought and played in equal proportions. We enjoyed every minute of it.
The part where they are the reluctant hero probably has more to do with the relationship not with the special sibling but with the parents.

I know I'm guilty of snapping at her to "just wait" when dealing with a Leo issue; caught up in the moment I just want to get through it and it doesn't even register on my radar that she too, might be hurting. When Leo was a bit younger and suffering from more frequent seizures, Nika had to learn the seizure action plan protocol along with the rest of us and for her it was something along the lines of hush-up and stay-out-of-the-way. She grew skittish around the sight of Leo's rescue meds, and would often lurk in her room until the crisis passed. The times we had to go to the ER were as difficult for her as for us. 


Siblings of special needs kids often have to put up with parents who are frazzled, frequently tired and overwhelmed. These parents sometimes don't have the extra physical or mental energy at the end of the day to do anything else but the bare necessities. Trips or family outings are more rare because of all the extra planning that needs to go in to it and issues that can complicate even a brief outing. When Leo was smaller even something like driving Nika to school was an ordeal. Nika got used to hearing me say in answer to an appeal for something, "we can't because Leo is/needs/can't...." It sucked to have to say that then and it still does, though I am now (better late than never right?) more aware of not making it seem like it's all because of Leo.



Nika is my reluctant hero. In spite of the unfairness, in spite of the fact that she had no say in the matter, she plays with Leo and helps him, and not because he's so special and deserves her kindness but because he is her brother. It's as simple as that.  


Siblings of special needs kids perhaps grow up on the back burner at times, but perhaps they also grow up with a sense of acceptance of circumstance and learn viscerally the wisdom in non-judgment. Perhaps they also will know the value of kindness for its own sake without discrimination; limiting it only to those who society deems worthy. I would love it if Nika helped Leo win a race, not because he is disabled, not because he is her brother, and not because WE had trained and brainwashed her to do it, but simply because he needed the help. And that is a simple rule that should apply to everyone. In this scary and cold world a few warm hearts can ignite a bonfire of kindness and love, even if sometimes, they might be reluctant at first.                                     

Comments

  1. This is so beautifully said. Thank you for the post on your sweet Nika and to all sweet and enduring siblings.

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