I couldn’t fall asleep tonight, so I did what I think most Americans do: hop on Facebook. The rational part of my brain doesn’t know why I choose to combat my lack of falling asleep by doing the opposite of what doctors and those familiar with brain activity suggest. I know better, but sometimes I don’t do better.
Some nights I aimlessly scroll and keep scrolling until my eyelids are too heavy to keep up. I’m notorious for accidentally liking posts that I don’t really like just because my finger is in fast-action rapid mode. Scroll. Scroll. Scroll. But tonight was different. Instead, I hopped onto my profile and scrolled though all the posts I’ve made since January 2019.
36 minutes later, I still can’t stop crying.
I choose to be open about our journey with Autism because the weight of a diagnosis is a heavy thing to carry alone. And while I believe that sharing and writing are some of the ways in which I can process, heal and accept the things I do not like but cannot change, revisiting old blog posts also mean revisiting heartache.
41 minutes later, I still can’t stop crying.
I did my best to stifle the sobs so I wouldn’t wake my husband. As quietly as I could I tried to get out of bed without him noticing, but he’s a light sleeper. Almost immediately he asked if I was ok. “What are you doing?” he says. I suspect that he hasn’t really heard me cry because he would immediately go into “fix-it mode”. “I’m going to go sit in the living room because I can’t fall asleep,” I tell him. This is not a lie, I tell myself. I grab the computer to type and settle into the chair.
48 minutes later, the crying has almost stopped. I need tissues.
I’m reminded of a social media post a friend of mine shared when she was going through a devastating time last year. I think the post said: Check on your strong friends.
I sometimes wonder if people think Juan or I are strong people.
Somedays there’s enough hope and optimism about how this will play out in the end, that it might be borderline unhealthy. Some people would call it denial. My husband and I chat casually and sometimes joke about what are we going to do when we’re “empty nesters”. We dream about buying a lake house, traveling in a RV, being lazy and getting to do all the fun things without little children. Neither of us will say it, but I know I’ve at least thought it: What happens if we’re never empty-nesters — what if Jacob needs us for our entire lives?
61 minutes later, the tears start up again.
It is the scariest thought to me. The idea that even as a grown adult our youngest might always need us. And not in the same ways as our other children. I mean in the sense that he is totally unable to take care of himself. This part seems the most unfair to me. Not because my life will forever be dedicated to my son, but because he’ll probably out live us. Who will take care of him then? Is it fair to expect his siblings to step up to the plate? If not family, it is realistic to think that someone who doesn’t really love him can take care of him just as well? I don’t have the answers, but the questions come just as fast as my midnight scrolling.
Most days, the reality of what we are facing seems apparent. Our struggles with having a 6 year old and 2 1/2 year-old are the same as most other families: dinnertime, bath time, reading with the oldest, and keeping the youngest from trying to grab all the pumpkins I’ve put out for fall decor. But then we add the non-typical challenges like, not being able to understand why the 2 1/2 year-old is visibly upset and having a difficult time in helping him calm down. Navigating the same conversations with your 6 year-old and telling him for the millionth time: “It’s not that your brother doesn’t love you, he just doesn’t know how to play with you yet.”
73 minutes later, I found some tissue and I wonder if my eyes will be puffy tomorrow.
On rare occasion, the stress and feelings of anxiety are almost crippling. I become too fixated on all the “what ifs” and it’s a rabbit hole that has never fared me well. Yet I dive headfirst. What if he never talks? What if our insurance deems that he’ll never get better so they deny services? What if he becomes so big that the tantrums we can barely handle at 2 years old become dangerous at 15? What if we use every penny we’ve saved and earned and nothing changes? What if I have to quit my job to home school? I feel the weight of my worries on my chest and sometimes it’s hard to breathe. The guilt will eventually settle in and the stress turns into shame. Other people have it much worse, I tell myself. Why are you so fixated on language skills, be thankful you have a son who is alive. Use all the money you have, your kids should be worth it. Other people are forced to navigate this experience alone, be grateful you have a husband, friends and family you can rely on.
82 minutes later, I can breathe like a normal person again. Falling asleep should be easy.
Maybe Juan and I are strong people. But more than strong, I just want people to really think of us as honest. Nothing about this journey is fun, but it has made me appreciate my husband and his unwavering dedication to our family and our children. I knew I was lucky 13 years ago when he asked me to marry him, but now everyone knows.
I realize that we all have our stories to share, if we choose. Every single one of you who reads this blog have a worry you carry. You’ve buried a loved one. You’ve lost jobs. Some of you have barely survived the end of marriage. You’ve made financial decisions that you regret. You’re stuck at a job you hate and feel hopeless. You’re not sure you’ve found your purpose and it might feel like time is ticking. I’d say to you, that you too are strong. And if I haven’t reached out it’s because somedays I’m barely surviving.
94 minutes later, I’ve just started yawning. It’s time to go to bed.
So, check on your strong friends. But also check on your vulnerable friends, and your quiet friends. Check on your single and married friends. Check on the friends that are easy to love and those who simply are not. Check on the friends with kids and those who have none. Check on the loud friends and those that sometimes annoy you. Life is sometimes too heavy to carry alone.
Signed with Love, Kat.