I sometimes wonder, what the Hell did I do? What did I do to deserve this?
***
Oh, Luau…the Lord moves in mysterious ways. We cannot know what his plan is. We can only have faith that he has us on the right path and that he will only put challenges in front of you that he knows you can overcome.
Yeah? Tell that to the guy who disappeared down a sinkhole last week.
***
Last night Jess, Brooke and I went to go see Katie in a school production of a musical. Katie had been fighting a bad cold all week, but was determined to perform. Little Brooke was even saying that she was excited to see the show. Everything was going great – Brooke was singing along, watching, keeping an eye out for Katie – yes, everything was going along just fine…that is, until it wasn’t anymore.
Just before intermission Brooke turned to me and said, this show is too long.
I hushed her and said that intermission would be soon. She then said she needed the restroom.
Fine, I thought, no problem. We slipped out of the auditorium and were back in our seats in minutes. When intermission arrived, I went to get a snack. I was gone maybe 10 minutes at most. When I returned Brooke was in full meltdown mode. She was done, cooked, finished. Jess walked her outside to try to calm her down but to no avail. About 5 minutes later she came in alone. A friend was watching Brooke in the lobby.
Can you take her home, she asked.
I sighed. I wasn’t going to get to see the second half of the show.
I wondered, what the Hel did I do? What did I do to deserve this? To be clear, this question wasn’t directed at Jess. There was no way I was going to let her miss the closing act of her baby. Those two have a bond that is beyond special, beyond your typical mother-daughter relationship. No, my question was for the Big Guy Upstairs.
What did I do?
WHAT HELL DID I DO, “LORD”???
I took little Brooke by the hand and trudged out of the school, shoulders slumped, on the edge of tears. Upon arriving home, Brooke wanted to draw. I told her one picture and then it was time for bed. I slumped to the floor feeling sorry for myself.
I again wondered to myself, what did I do to deserve this? But then it struck me. Maybe I did do something to deserve this; maybe at some point in my life I treated someone poorly or used terms that were inappropriate – who knows? It didn’t matter.
My question morphed. My thinking changed. My anger at the Petty Guy Upstairs grew.
The real question I should have been asking is What the Hell did Katie do to deserve this? Why does she have to suffer collateral damage?
The answer?
Nothing.
She didn’t do anything to deserve this. This whole “sins of the father” crap is just that…crap! Petty, Vindictive Crap!
7 miles at 11 o’clock at night while blasting Zepplin II helped my mood a little…but not much.
Run Luau Run 
Oh, I am so sorry. Just so so sorry. Please know that you are not alone. My husband is not writing this comment, but if he were he would most likely say, “sometimes it just s#cks…..just really, really, s#cks”. Your community holds you and your family.
I get this. Totally. Just this month it’s been one missed band concert and one science fair that we had to leave early. At that same science fair, I watched a friend have to leave with her older autistic son because he was done and she missed hearing her younger daughter’s name announced as a winner. It’s not fair in any way for any one – not the kids, not the siblings, not us parents. It’s okay to be angry and shake your fist at the sky. But we trying because that one time when it does all click – that’s the milestone that we all want to remember. Don’t give up.
Matt as I said last night many of us have felt the anger you feel, I know you know this. It was good that you were A. Able to vent B. use your anger positively by running.
As for the other stuff, God, sins of the father, not for me to comment on. We all have our beliefs and it would be inappropriate for me to share mine here. I will keep good thoughts and do what I do with y’all in mind. Hope that helps:)
You are not alone. I feel this way a lot. Just visit……don’t stay.
Yup–that theology IS petty, vindictive crap. It’s bad theology and there’s no way around it.
You didn’t do ANYTHING to deserve this, Matt, just like I didn’t do anything to deserve a kid with life-threatening food allergies (not saying my or my kid’s fate is worse than yours–it’s just my analog).
It’s just: the way life is, that these shitty, hard things happen to our kids and to us, and it’s amazing the mad skillz we develop to be the kind of parents we never thought we could be to compensate, but in spite of our strength and our skillz sometimes we just SNAP.
Last time Carmen went to the hospital and had her first overnight stay for anaphylaxis, I spent the night with her, but at 4am crept out when my husband relieved me and took a plane to LA to go drinking and hiking with Aisha. And it was the best! I could not worry for 24 hours that I was going to accidentally kill her with her next meal. I could just blow off steam and get a little space. And that made it possible for me to go back and make 10,000 more allergen-free meals.
I guess all this is to say: if God is saying anything, God is saying: “I know this totally sucks and is super hard and painful. Just keep going, and if you need a break, take a break–just make sure someone else is ‘on’ before you go off-duty for a few. And I’m here, too. I never need a break, because I’m God.”
Hope that’s not totally cheeseball! But it’s what gets me through.
Dear Luau,
Who am I to tell you how you should feel or what you should ask yourself or above? I am No one in that position. I don’t even really know you. What I do know is that I have been through the same.
My question was : “why me? What did I do to deserve this? ” Why is everyone around me raising beautiful neuro typical kids and I am not? Why me???
Well , it took a while to realize that was the most brutal selfish thing I had ever done.
“Why me?” was literally : “let it happen to anyone else, I am too good for this.
Let the rest of the World have all the tough things there are out there, but not me, not now, not ever! I am better then the rest of the world…”
That is very selfish, No God out there gave you anything you can’t handle.
Matt Wilson, you were given a task with a purpose.
You were given Autism because you can handle it, you can make the best out of it , writing about it, running about it, wearing a blue wig about it and letting the rest of the world know that you are here for them.
You are here for the ones that can’t run, the ones that can’t write and the ones that are thinking about quitting. There is no quitting anymore. There is no stopping . We gotta keep running . Our life has a different purpose. And if we can convince one person , even one person only, it could be one mom, one father, one grandparent , a friend, not to quit, our purpose will be for filled
and all the tears , the rage, the miles, the smiles and the words we have poured out of our bodies will finally make sense. There is no quitting until we cross that finish line. The longest run of our lives…
The day my daughter asked me : “why does -brother name- never plas with me as my friends siblings play with them?, why he doesn’t love me? Why mom? ” she was 4yo. I tried to explain her, he looks at the world different, he feels it different so he express his love differently … Se got it faster than I did ..
Still Everytime I see her planing a game or drawing a picture for him expecting him to show lots of love like she does: hugging saying thanks Kissing etc . Crushes my hart in pieces. No matter she says :”I know mom” I know she will keep trying and trying. And I know he loves her and she knows it to, but she wants to break that barrier so much.. She needs him to hug or tell her so he keeps fighting. He … Oh gosh.. Hate collateral damage too 😥 I wanted them to have a sibling relationship as I have with my siblings I wanted them to be 4 no 2 but there is no way I can handle 2 more with out losing him 😦 so she has to learn something she shouldn’t. And she learned faster than me.