I caught myself this morning wishing the most horrible thing – I wish our family was normal. What an awful, awful thing to think. We were sitting at breakfast at one of our favorite restaurants on our first full day of vacation.
The night had been a bit of a bust with Brooke refusing to sleep in her room with her sister. I woke up at midnight to find Brooke and Jess passed out on the couch. I moved them both to the main bed and crawled into Brooke’s bed where I lay awake for the next three hours.
Score one for sleep issues and epilepsy.
On the way to breakfast Brooke was in high anxiety alert, slipping quickly and “easily” from laughing to yelping and back again. Walking through town I couldn’t help noticing all of the “normal” families, their kids behaving or misbehaving in neuro-typical fashion.
Across the street from the restaurant, Brooke knelt down to pick a flower that was defiantly growing where the sidewalk meets the street. Jess warned her that she needed to back up because there was traffic and it was dangerous. Brooke yelped and then yelled.
I took a deep breath.
As we sat waiting for a table, Brooke began to lose the ability to cope with her environment. Jess asked for the iPad as a distraction, unaware that Katie was using it. Handing it over, Katie could not stop her pre-teen tween mind from sulking a bit.
Wasn’t this supposed to be a vacation?
I watched a family of six get seated. The kids were a bundle of voices, oscillating in volume, intensity and intent. There would be little screams from the littlest one (a baby), arguing from the older ones (maybe 9 to 11?), but it all seemed so “normal”.
And that’s when it happened. I caught myself wishing that my family could, at least for a week, even a day, be “normal”; and I hated myself for thinking that. Why couldn’t the debilitating anxiety Brooke suffers just go away for a little while? Why couldn’t she just be happy to share a room with her sister and have a “sleepover”? Why couldn’t Katie’s tween-angst be just that and not have to be peppered with having a sister she feels she can’t communicate with or even worse, who she at times resents?
As mad as I was at autism and epilepsy and tweenagedom, I was even angrier at myself for wishing “normal”.
Sitting at our table, Jess asked me what was wrong. My face had betrayed me. I waved her off. It’s nothing, I said. She didn’t believe me.
As soon as the food arrived my stomach took over, but I couldn’t stop myself from occasionally looking around, a feeling of envy creeping ever so slightly.
Breakfast done, the girls and Jess went for a walk, leaving me to pay the bill. I took a deep breath and sipped my coffee. A moment of calm amid the cacophony of a busy island restaurant. I almost began to cry.
***
That would have been the end of this sad post, but about 10 minutes later, I caught up to the girls. As we walked toward a toy store Brooke wanted to check out, Jess leaned over to me and said, “that was a little odd.”
I had no idea what she was talking about, but just as she was about to explain, a woman came up behind us, gushing to Jess, “I just want you to know that I read your page and I get so much out of your blog; I’m a teacher and your writing has been so helpful!”
And for a brief moment I thoughts maybe there is a reason for all of this.
Run Luau Run 
I love this and am so glad you had a clarifying moment. You have no idea how startling and relieving it is to be reminded that we all make wishes we don’t really mean…except when we do mean them…except that we really don’t. You might feel lonely sometimes, but you speak a language that I and many others are absolutely fluent in.
Thanks for being brave and honest. It looks good on you
But don’t we all do this? I often find myself in the middle of yet another meltdown or anxiety filled fit of rage wishing, hoping, praying for just *one* time where we don’t have to look/sound like such a goddam train wreck as we do the things that all the ‘normal’ families do without ever giving a second thought. Sending tons of light and happy juju your way for the rest of your vacay! The bliss is there-we just have to work harder to find it.
Everyone feels that way from time to time and yes, then we feel guilty later. You keep trying, you continue to take her places under the cloud of a meltdown. I can’t tell you how many parents that I know personally who live so in fear of a meltdown, that they go nowhere and do nothing, their children go nowhere and do nothing. You’re trying… You’ll keep trying and it’s hard, but it will get easier, because you keep trying, maybe never perfect but better. It’s the best thing you can do in my opinion. The next time you feel guilty about that “horrible: thought that we all have, remember how much you’re doing to make her life more manageable for her and your whole family.
I get this completely. I had moments like this on our vacation last week – at dinner, at the beach, on a pirate ship. And I felt the guilt for feeling that way too. But like the previous person said – we’re out there with our families being a family the way we know how. And there’s something incredibly special about our families.
I think most (if not all) of us get that twinge of envy every once in a while. It creeps in. But It seems especially pointed when we’re on vacation – even when it’s somewhere completely familiar, like my parents’ home on the Vineyard. For my family the hustle and bustle of the summer tourists, and the constant eating in restaurants with rotating summer staff who never get a chance to know your kids the way the staff in the restaurants at home might combined with not-as-familiar sleeping arrangements can really complicate everything when everyone winds up sleep-deprived. Maybe vacation just means something different for our families. I would wager that at least a few (probably more than a few) of those seemingly normal families are wrestling with very similar issues. I’ll confess a bit of envy seeing the pictures Jess posted of your girls, hair done, beautiful sundresses and eating ice cream off of cones so nicely. It hardly ever looks that good when we get ice cream! đŸ˜‰ (although it’s fun in our own way.) We’ve all got stuff. You’re not wrong for having those moments. But you would be wrong to let it take over your whole vacation. Enjoy this time with your family. Try to enjoy the island too, but don’t pressure yourself about getting it all done. You’ll throw your pennies at Brant Point. You’ll be back. You’re a great dad and your girls are blessed to have you.
I know, Luau; I know. Mixed blessings, eh?
Don’t ever deny yourself the feelings you have. They are real and most importantly normal. Guilt is a useless emotion, so for goodness sake don’t allow that to creep into your consciousness. And what person in our positions haven’t felt this way? I have yet to me one.
It’s ok to feel what you feel!
Love you,
Mom
Don’t beat yourself up over that thought. I think we all have that thought when it seems too much. That instance of looking at normal families happens everytime we’re when shes having a rough time. Same time I would trade what I have for anything because she has taught me so much about her and myself. I’ve gotten over most of the uncomfortableness of her being a 8 yr old acting in toddlerish way because that’s who she is.
I think it’s normal to want some more ‘normalcy’ sometimes. The thing we have to remember is normal is a relative term. Other families may not have had to go through what you do on a regular basis- but they might be fighting a different battle that just may not be as easy to see on the street. You are not wrong for wanting different sometimes. you are a dedicated father and husband and you want the best for your family, you want to make their lives easier…no one can shame you for that.
You’re awesome, don’t forget it.
There IS a reason. One small reason amidst the larger plan that my mind is too mortal to grasp, is the way in which your amily has blessed mine and helped us pave a way on this Autism journey. I thanked Jess the other night on FB but Ill thank yiu now too… Jess’s blog was the first I found when I suspected my daughter has Autism and needed information and to hear another mom talk about her journey. I cannt overstate the importance of Jess’s (and your) tone in approaching Autism and embracing Brooke for who she is and seeing BOTH the gifts and the challenges of ASD. It has helped me to see Autism, and thus my daughter, in this same light and when I go to support groups with other Autism parents I see how rare this attitude is… so many parents cannot get to any level of acceptance and jst chace any hope for a “cure” that they cant see the forrest from the trees. So of course you are human and are going to have those moments, but your journey has also been highlighted by the Lord to encourage others and Im not sure either of you, or your girls, will ever understand in ths lifetime the countkess ways your family is blessing others with your honesty, compassion, and desire to share with others. Be encouraged, brother… the pain is legit but God does not waste pain… He uses it to help others find community and comraderie in this journey. Bless you all!
Catching up on your blog….this piece of writing…so raw, honest and beautifully wriiten. I agree with mom, ” It s ok to feel what you feel.” I have felt the same way….here is a post I wrote….I hope you might find comfort in knowing you are not alone in “wanting the normal” sometimes…..
http://www.cheairsgraves.com/2013/04/11/the-seven-days-of-spring-break/