Sometimes you catch words coming out of your mouth that you truly never could have guessed would pass your lips. For example, “You can’t have your ice cream until you finish your McDonald’s.” Or, “You will go to the beach and you WILL have fun!” Unfortunately, those sentences were delivered more than once while we were living in India and traveling through Indonesia. Getting the kids to eat Indian food at first was quite the struggle. So when we would find a familiar food item or restaurant, out of exhaustion and in need of a minute of life without constant battle (Parents of young kids- I know you feel me,) we would give them what we assumed was EXACTLY what they would want, only to find that there was STILL something off. Like, the cheese was different on the pizza, and there was no McDonald’s cheeseburger, only chicken.
When we left India for a forced 3-month exit, we assumed travel was the best option versus returning to the US. After a month in Thailand, where we had spent most of the time swimming in a pool or at beach, by the time we brought the kids to a beach in Bali, they were “beached out.”
That sounds ridiculous, when I say it out loud. But in reflection I can understand. Going to the beach after leaving the summer season of India was like literal water to our thirsty souls. We were in desperate need of being outside, in the fresh air. So we overplayed the beach like you did when you were young and you put your favorite new song on replay. It was tempting to perceive our kids were simply being “spoiled” and “ungrateful” with their whining and resisting of fast food/ the sea and sand. But sometimes our perspective on what they would enjoy isn’t always spot on.
I recall these stories because something happened the other day that brought them back to the forefront of my mind as if it was yesterday and not almost 3 years ago.
I found myself saying something that felt almost as foreign as it was crossing my lips, simply because it was my first time saying it.
“Wow. I am so thankful for the Cochlear aqua gear.” Try saying cochlear aqua gear 5 times fast.
I’ve realized that living in a foreign country sometimes parallels the way it feels when you are simply walking through a foreign aspect of your life (like being the parent of a child with cochlear implants). The unexpected challenges catch you by surprise. Just like the things you assumed would be tasty and fun, were not- The things you thought would be an easy, just aren’t.
When the weekend comes, we are often looking for activities that our family can do that check a few boxes. Is it outside? Is it active? Is it something that all 3 kids would enjoy? Checking all 3 boxes is not easy. But when we heard about the upcoming church picnic and kids color run, I think we registered faster than we read the event details. So when we packed up our picnic lunch and I was checking to see if there was anything I forgot….BAM! “Oh wait- what about his “ears?” (Note: We call his implants his “ears.”) I messaged his audiologist and she said he could still participate but to make sure to use his “aqua gear” to protect his implants from the residual powder that was to be thrown on him while running.
The aqua gear are incredible. They allow him to wear his implants in the pool! However, they make for a very clunky, gawdy experience for him and they do not stay put with his level of activity in a pool. They frustrate him and he often chooses to remove them and simply go without sound. Sometimes this makes my heart sad. I think because it reminds me, even though they are amazing, his implants did not repair his hearing loss. Although, sometimes I think it makes me more sad than he actually is. He has just as much fun with them off sometimes! Maybe it’s because he is an excellent lip reader. Maybe I project how I feel too quickly. Once again- assuming that fast food restaurants, beach trip and color runs are sure-fire wins, when they might actually not be.
Likewise, being the parent of a child on the Autism spectrum, sometimes it’s just simply a Saturday that catches you by surprise. Here you are thinking you will sleep in a little (because it’s the weekend, right?) and that your family might enjoy an outing and a day off of schedules. Instead you wake up to find it’s going to be one of those “off days”- the ones that remind you your child has some extra struggles. To enhance the struggle, these “off” days always seem to come the day after a couple days that felt “normal” and “functional”…“thriving” even.
But what’s my point?
Like always, I find solace in both rejoicing and lamenting, sharing my experiences with words and hopes of affirming not just myself but anyone else who might be reading this and longing for this kind of connection.
I bet all parents can relate to this thought, that a lot of days simply just do not turn out how you thought it would.
I remember back when we were newlyweds, dreaming about what values we wanted to instill in our children. Back when people asked how many kids we wanted to have and we would answer romantically, “five.”
And now….10 years later with 3 children, I can understand why those receiving our answer of “five” held the facial expressions and the muted responses that they did.
But just as important as it is to recognize the struggle and process those emotions so we can support one another better the next time around, the “great” days and moments need to be meditated on too.
So on that note….the other night we were all sitting at the table eating dinner.
Just kidding! (Kind of.) Because to be honest, THAT sentence alone is a victory worth noting.
Because getting 2 boys with sensory issues, ADHD and Hearing Loss to sit at a table and have a functional dinner time meal is like getting a fish to NOT flop when it’s first out of water.
But lately…… we’ve not only been sitting together….. and eating…but talking too! Talking in a group conversation type style! You know the kind- where people take turns, and finish each other’s sentences, and connect!
Just lately, we have seen it. And it’s priceless.
Some days, you are taken aback, because your 6-year old cochlear implant wearer just told you in full sentences, “Will you go wait in line for me and ask for a velociraptor balloon animal- but if she can’t make that- will you get a monkey?”
I remember when he only had 30 words total that he could say.
Some days, your 8-year old, chooses to give his balloon animal to his 6-year old brother. EVEN THOUGH he obsessed and fixated on getting one, spending the majority of his time at the picnic event worrying about getting one, and almost had a full-on episode when pulled out of line…..
Some days you get to see your child grow. You get to see your child do something that was either SOO very difficult for them to do (but you know that they’ve worked hard on it in therapy) OR something you NEVER thought they’d be able to do! Because miracles DO happen, and walls DO come down and limits CAN BE surpassed.
And for the moms and dads out there who can relate- sometimes you get to encourage your own self because you have seen and felt that YOU TOO have experienced growth!
I remember the days when I worried if I would ever be able to NOT worry. I remember when my daily prayer was to not get mad or let my frustration with kids’ behaviors get the best of me. I remember when as a couple we grieved over if we would ever experience a social event where our family was functional, socially appropriate or without crisis.
I still sift through all of these thoughts, but I am anchored by experiences of success, muscle memory, thicker skin and above all else, an unshakeable faith in my Sovereign God. My God who sees all of my days, all of my weaknesses, all of my efforts, all that I carry, and all that I hold dear.
And because of that I GET to honor my son’s sacrifice of a ballon animal- even though there were a number of unfavorable behaviors that preceded….
I get to give myself a pat on the back when I chose patience and resisted the felt social expectations and judgements surrounding me and chose NOT to reprimand my kids, but instead walked them through a “do-over” so they could experience how things could have gone. So they could experience the possibilities of how life could be.
Because of God’s grace and mercy and the life experiences that HE has allowed me to endure, I understand better WHICH behaviors to place my mind and my heart on. I understand better how to handle the unexpected.
I am definitely, still flawed and dependent on Jesus and will be until Heaven. Thank God HE is with me every day until then. Because I know there will be many more moments of failed outings and wrong assumptions of what our children should think is fun and great and tasty.
But I look forward to more unexpected phrases like, “Thank God for the aqua gear.”