Tuesday, December 20, 2016

Special Needs Superstars and Why It's Ok For My Typical Kid to go Without

Logging in just now felt like running into an old friend who you often think about but never take the time to reach out to. I've had so many thoughts rattling around in my brain lately; like coins in a soda can. Noisy and hard to ignore, but equally difficult to get out.
I'm not too proud to admit that many of my thoughts recently have involved some kind of resentment.

This time of year is always kind of bittersweet... I love the spirit of the holidays-from Thanksgiving to Christmas- but I always struggle a little to keep a smile on my face when all I can think about is how I wish London could run around with her cousins, or eat the stuffing that my mom makes that I love so much, or help decorate the Christmas tree. Or anything at all, really.

To keep my mind in a positive place, I try to do whatever good deeds I can for people who I feel need a little help or a little extra cheer. And one of my favorite things is reading stories of good people doing good things simply because they can.
There's no shortage of stories like that floating around Facebook, and I find that many of the families in the special needs groups that I belong to are recipients of such kindnesses. It's truly heartwarming. And sometimes heartbreaking.

Let me explain.

You know the old saying, 'the squeaky wheel gets the oil'? That's very much true in some of the groups I'm in for special needs families. There are superstars. There really isn't any other way to put it. These kids are incredible and strong and they are fighters to their very core. They have news articles written about them, and strangers from all over the country and even the world follow them on social media. They get donations pouring in from people and organizations all over. The posts about these kids are always met with countless comments and sympathy.
None of this is necessarily a bad thing.

But what about the other kids? What about all the other parents who are quietly struggling to make their ends meet? What about the ones who don't post about how hard their life is and about how they can't afford everything in the world and how their hearts are breaking because of the emotional toll that this special needs journey is taking on every aspect of their lives?

I've sat back and watched the same people get help and handouts from organizations over and over. I've seen how their Christmas's are plentiful because of generous people who want to do a good deed. I've noticed how they get things taken care of for them whenever they mention that money is tight. I know that the siblings of these special needs kiddos often get a bunch of crap just because they have a brother or a sister who is medically fragile and requires a good portion of the family income to care for. There's equal parts of incredible and irritating in all of this.

Incredible to know that people are willing to reach into their pockets and give of their resources. Incredible because so many people want to make a positive difference. Incredible because nobody wants to see a kid go without simply because they have a sibling that requires a lot of extra care and attention.

Frustrating because it seems to always be the same families in all the groups. Frustrating because they aren't the only ones hurting. Frustrating that they call the attention to themselves so often, knowing full well that by doing so, they are bound to get money or gifts.

Let me be clear here: I'm not saying every person who receives any kind of assistance or help like this is exploiting their child in order to get free shit. But, seriously, it seems like some of them use their kid's situation to have bills paid for them or to have Christmas provided for their family.

Let's talk about the siblings or kids who are medically complex and have special needs. They go through a lot of crap. They have often seen things that many people never have to see in their life-- like seizures and procedures and medical tests. Chances are they've felt scared that their sibling might die. They probably have felt jealous about the amount of attention their sibling takes from them. They have almost definitely missed out on fun activities because their family can't afford them or they can't do them due to the health of their sibling. Maybe Christmas doesn't involve mountains of presents to unwrap.
I'm ok with that.

I'm ok with my child knowing that they sometimes had to go without because of our unique situation. I'm ok knowing that my other kids might not get everything on their Christmas lists because money is tight. I'm perfectly fine if some stranger DOESN'T swoop in to provide games and toys and gift cards for my kid on Christmas...
It might be hard on them now, but I hope that one day they would look back and see that that's what family is. It's sacrificing for each other. It's leaning on each other and sometimes going without a new video game in order to pay for medication. It's doing whatever it takes to ensure everyone is taken care of before making sure that everyone has STUFF.

I find myself resenting those "superstars" a lot. Sometimes I DO want someone to recognize that my other kids have had to deal with a lot of grown-up shit even though they are just kids. Once in a while I want people to share my daughter's story with admiration and, yes, sometimes it would be pretty damn amazing to just have all my needs taken care of every time I post about them on Facebook.

But here's the thing: our needs ARE always taken care of. By hard work, smart money choices, and sometimes the help of people who love us. We are so incredibly blessed to have family and friends who will step in when we need someone to watch the kids or when we need help with home repairs. I've done fundraising before where I'm blown away by the generosity of people who don't even know us. I hope that when my boys are grown, they can look back on their childhood and feel proud about the choices we made and the times that they missed out on something because there were more important issues. I hope they learn that being a squeaky wheel isn't who they want to be.
If the meek truly do inherit the earth, then I hope they are meek and humble and kind and willing to make sacrifices for those they love.

No comments:

Post a Comment