I was very close to posting the blog below on Thanksgiving Day when I saw the Giving Thanks post from Alyssa Silva, writer of one of the blogs I now follow.
She’s not a parent of an SMA child, like I am. She has SMA, Type I, and statistically her chances of survival soon after her birth were extremely low.
She’s an inspirational young woman, and as I read her blog about the things she’s thankful for, I realized a couple of things: (1) your situation is what you make of it; you can choose to look at the world positively or negatively (it’s a daily, if not hourly, choice) and (2) I’m nowhere near the positive state of mind that Alyssa is when it comes to our daughter Adriana’s SMA diagnosis. I’m bitter, angry and many other negative emotions. Not all the time, mind you, but a lot of the time. I hope to one day reach that “thankful” stage of life.
I can take a lesson not just from Alyssa, but from our daughter, Adriana, who so far is a just a happy, carefree, almost 3-year-old child……who happens to have SMA. The negative part of me dreads the day when she asks me why she can’t walk.
Anyway, you can keep reading below for the original, “(Un)thankful” blog entry. I’m thankful to Alyssa for making me realize how inappropriate it would have been to post on Thanksgiving Day.
The (Un)Thankful Thanksgiving Message
Our son, Santiago, turned five years old on November 24, and we decided to throw him a rather large party, figuring turning five is a pretty big milestone, and he will hopefully remember his first “big” party.
My wife Gaby’s family has some property in Pachacamac, Peru, about 45 minutes south of where we live in Lima. They call it “La Granja”, or “The Ranch”. They use it as a family getaway on the weekends, and it’s really quite nice with a large, grassy yard and a small house Gaby’s parents built some time ago.
We went all out with a large inflatable slide, a trampoline, a clown show and a large tent to protect the guests from the sun. Remember, we’re in springtime, approaching summer, in the southern hemisphere. Soon we’ll be breaking out the shorts and swimsuits, bracing for a hot and humid Christmas.
Gaby worked hard to make everything happen. And although we couldn’t have done it all without the help of our family and friends, this event – like any big event – came with its fair share of stress. It’s impossible to escape some form of criticism; we’re guilty of doling it out ourselves.
In the short time since we moved here in August, we’ve been to maybe four or five birthday parties for family friends who have little kids. I sometimes feel the objective is to throw a bigger party than the previous one, in which case we’re certainly guilty of doing that.
So, again, the stress was there for us, the parents, to make sure the kids and the parents were having a good time…..just like with any party, I guess.
I’ve never been much of a social extrovert……..or any extrovert, for that matter. Gaby, on the other hand, will throw a party to celebrate the latest gray hair on my head (our whole life would be a party if she did that). She just loves a house, a yard, a restaurant, etc. full of people.
I’ve gotten better, I think, about being open to hosting parties. I even remember a few times when I said “no” only two or three times to Gaby’s latest request to throw a party. The party is going to happen regardless, so maybe I’m just getting too old and too tired to object…………or too deaf to even hear what she’s saying.
Problem is now, I have a “legitimate” reason to dislike parties……..especially children’s parties.
Every child I see running after her friend; every group of little girls I see running up the stairs; every kid I see climbing the steps to the top of the inflatable slide represents a child doing something my little girl cannot.
In fact, it’s safe to say that I don’t just dislike children’s parties; I hate them – or at least certain aspects of them (read the previous paragraph again).
I hate going to the park because Adriana can’t climb around on the swing set, or pedal a tricycle, or ride a scooter. She can’t fall and skin her knee because she can’t do the simple things that children who don’t have SMA can do; stand and run.
I never paid much attention to those little legs attached to childrens’ bodies until Adri was diagnosed with SMA, and we found out she may never walk. I never noticed the strength of a child’s legs; the child’s ability to fall and bounce right up again without consciously thinking about how to do it.
Our little girl’s legs give way with the slightest of weight she puts on them. If her head moves too far off center, it flops down because the weight of it is too much for her neck to hold up.
It’s an anger I’ve never felt before. An anger at myself for having given Adri a despicable disease. An anger because eventually the day will come when she tells me she wants to jump, and I have to tell her she can’t.
At least for now I can hold her in front of me and jump her up and down while her big brother holds her hands and jumps with her. I don’t know how I’m going to do it when she’s 5, or 8 or 15. I’ll figure out a way, though.
[Adri with her cousin Nicolas at Sant’s party]
[Adri with her cousin Daniel on the trampoline]
I live in fear for the day when she asks me why she can’t run after the other little girls in her class. When she asks me what’s wrong with her. When she tells me she hates me for having given her SMA.
“I hate myself more than you’ll ever hate me,” I’ll tell her. But, I really don’t think it’ll help her much.
I don’t know if it’s being away from our home in Littleton, Colorado for the holidays that’s got me down, or the fact that we no longer have a home in Littleton.
But it’s the memories of times with our family and friends that helps get me through it. Not just holiday memories, but any memory of love and laughter…….and even tears.
And so, I’d like to end my Un(Thankful) message by thanking you for listening to an angry man rant. I know I have many things to be thankful for, which I’m sure you’ll see if you stick with me through my blog.
For now, though, I find it a little easier to breath having unloaded a little bit of the weight on you.
I thank you for allowing me to do that as well!
Goodbye for now.