The Hard Parts Always End
Like all families we have good days and hard days and days in between. Sometimes the hard days make me feel like I may actually break. But I don’t. None of us do. At our house we just keep moving and growing and reminding ourselves that the hard parts don’t last forever.
Most of the time we ground ourselves by focusing on the positives.
Our youngest son Maxim is 8 years old, and he was diagnosed with Autism when he was 3, although I’m pretty sure he was born with it.
When I focus on the positives I try to think about Max and who he is at his core. He is sweet and silly, and if you could bottle up the feeling of what it’s like to hold someone’s hand as the sun shines on your face, that feeling of warmth and vulnerability, of joy
and contentment...that would be the very best way to describe him and how he makes our family feel. When he’s happy, he lights up the world.
Max is super silly and bouncy, and just like his brothers has the most caring heart. He loves to kiss the top of my head, and he tells me he loves me at least five times a day.
When he eats granola more of it lands on the floor than in his belly, and when my feet crunch on it as I get my morning coffee, I find it maddening. Yet even in the sticky, crunchy, peanut butter smudged granola under my feet moments, I know our family would not be complete without him.
These are the things I try to focus on.
But along with autism Maxim also has anxiety... severe, unrelenting, debilitating anxiety. Medicine helps to keep this in check, and allows the sweet boy that he is to find moments of peace and joy throughout his day, but it doesn’t take it away completely. It is part of him, like his shadow. It is always there but only visible under certain circumstances.
Max’s anxiety is what sometimes causes me to feel like I will break. Anxiety and disabilities are a raw combination, and to see the storm of these two things swirling inside of him is never easy. Max is a child who physically and cognitively cannot do certain things for himself, things he really wants to do, and while struggling to come to terms with this he battles to regulate the frustration, fear, and even anger that come and go like the tide.
Even when he is engaged in activities he can do, things he can do with ease, there can be a break in routine, an unexpected event, or even a build up of happy excitement that will spark uneasy feelings in him that cause discomfort to bubble until it boils over becoming a sea of angst.
Times that are supposed to be happy and full of joyful anticipation can suddenly become taken over by anxiety and these are the times that weigh on me the most.
We just recently started to get ready for a vacation, the first vacation we have ever tried to take for 7 days as a family to a place other than my parents’ house. My youngest son is 8 years old and we have never taken a family vacation for more than just a handful of days… not because of jobs, or school, or because anything else prevented it, but because deep down we knew it would be really, really uncomfortable for Maxim.
In some ways this is easy to accept as a parent. There is Nothing we won’t do or give up happily for Max. However, Maxim has brothers who are just as loved and treasured, and as their momma too, I wonder if it is as easy for them to understand why we have to think so hard, practice so much, and plan so long before we can do anything as a family. Where other families leave their house for an outing, go out to dinner, and/or take vacations without much thought, we have to carefully plan, practice, and wait until the time is right.
Here we were though, eight years later with several shorter vacation practice runs under our belt, ready to give it a try!
What happened on this vacation is another blog post itself, full of both its own hard moments as well as magnificent ones I never thought would have happened. However, just preparing for this trip was a trigger for Max’s anxiety and that is what the rest of this post is about.
We know that changes in Max’s routine can be difficult for him, and so we prepared in every way we knew how. We talked about the trip, showed him on a calendar, counted down the days, and practiced reciting the day of the week and what the day before and after were so he would really understand the time. We packed ALL of his creature comforts.
I wish I had a picture. As we stood back and looked at our bags for the trip we laughed until we cried. Each boy had a small duffle bag, my husband Gregg and I had a suitcase, and Maxim...well Mr. Max had 8 jam packed bags of goodies. We were not leaving anything to chance.
We carefully chose his special toys, foods, medicine, clock and timers, blankets, pillows, visual schedule, and school work to keep as much of his routine together as we possibly could. We assured him of these things so he would know and not worry about what was coming. We reviewed when we were leaving, what the days would be like, what he could expect, what toys and items he could count on coming with us and what was staying home.
We tried to take away all the surprises and uncertainties. We tried to quell any anxious feelings that may arise. But sometimes no matter how hard we try or how much we do to prepare, anxiety still wins.
The day before the vacation began we had packed all our bags and placed them by the door so we could load up that night and make our early 4 a.m. departure to avoid traffic. As soon as Max saw the bags you could see the anxiety start to rise.
He knew when we were leaving but seeing the bags was too much, and he wanted to leave right then. He needed to leave right then.
It’s like when you are going to an interview for your dream job. You are a ball of nerves and excitement and you just have to get the interview over with. It’s something you want, but the anticipation of exactly how it will go is enough to bring on the worst case of butterflies you could possibly imagine, no matter how you have practiced or prepared.
“Let’s go,” he said as he pulled my arm to try and lead me to the door.
“It’s not time buddy. Remember, we talked about it. We go to sleep tonight and leave tomorrow,” I reminded.
“Noooooo! I want to go now. I want to go to the hotel now!!” Max screamed.
“I know kiddo, but it’s just like we talked about. First sleep and then wake up and go.”
Well, that was it. Max absolutely lost it. Like a broken record on a loop Max literally begged and cried and asked us to leave “Right Now!!” over 200 times.
Over. 200. Times.
After 45 minutes I stopped counting. Before he even had enough time to take a breath and process what I was saying, he was asking again. He wasn’t even asking to get an answer. I think he was stuck in an anxiety tornado that didn’t allow the question to stop.
Some of us cry as a form of release. I think Max asks questions, as if the asking itself might help him manage his feelings and somehow make it better.
Throughout the night we did everything we could do to lessen the anxiety. We tried to distract him, make him laugh, hug him, and rock with him. He sometimes rocks to self regulate. We tried to take his mind off it, ignore the questions, positively reinforce actions other than asking to leave, and in the end I even took a very stern voice and said, “No more asking!” We tried all the things, but that night anxiety won, and I have to tell you it was hard to watch.
When Max gets anxious like this it is difficult because it seems to play on every single emotion I have. I feel like I have fought an emotional war when it’s over, and if I think too long and hard about what it does to Max’s mind and body I fall apart.
My heart fights feelings that float back and forth between guilt that I can’t help him or that I wasn’t able to prevent it, to frustration that even a family vacation has to be dampened by the vortex of negative emotions that come with anxiety. I feel so very sad for Max that he is caught in such a stressful loop, and I’m angry that the same question just won’t stop. I feel guilty, so very, very guilty because while my heart breaks for my sweet boy it also silently yells, “Stop. Please just stop asking me the same question.”
In the end, Max tired himself out. He eventually did stop asking and drifted to sleep. In time, so did I. And this is what I try to focus on. He was sleeping. It was over, and when he awoke the next day we would have another chance to start fresh.
The hard parts don’t last forever, and even when more hard parts greet us the very next day, eventually those will end too.
In fact even when the hard parts last for more than just a day or night, the longer periods of “hard” are always peppered with happy, joyful, beautiful parts, and as a family we work so very hard to latch on to them. The next morning we shared some of those beautiful moments. Max bounced into the car and just knowing we were now on our way seemed to erase all of the stress and angst from the previous night. He could not have been more happy, and the rest of us could not have been more relieved.
Once we were all loaded into the car headed to our vacation destination I had plenty of time to reflect on the night before. But I didn’t.
Instead I chose to think about the beautiful parts. I thought about my sweet little boy and granola under my feet. I thought about his kisses and the way he tells me he loves me. I thought about how he makes dinosaur castles and volcano forests out of blankets, and wondered if he would create them the same way in our Airbnb rental as he does at home. I thought about his brothers who always try, no matter where we are, to sooth and make it Max’s best day ever. I focused on how lucky I am to have all 3 of them, my husband, and to even have the opportunity to try this vacation. I reminded myself each time I felt tired or personally anxious, “The hard parts don’t last forever. There will be moments of beauty in between,” and I focused on the joyful memories we were about to make.