Last week, I hit my annual wall. Luckily, this doesn't happen very often but when it does, it levels me both physically and emotionally. Molly and I were coming off a 9 day trip where I was her sole caregiver. As most of you know, she is a pretty easy going now at 19 years old. Her behaviors are minimal, she happily listens to her music or peruses her FB friends' pictures, she sits nicely with a group and loved digging in the sand at the beach on our trip back to Rehoboth Beach, Delaware. There was no Brooke to go play in the water or dig in the sand with her. No Jack to play "Werewolf" with her at night with the rest of the kids. There was no one to take her on a walk/hike and give me a mental reprieve from responsibility. Just giving you little background for my demise ;)
Molly can't do anything alone. Nor does she initiate wanting to do anything so she can happily stay in her room FOR HOURS with no complaint. This, my friends, is good and bad. My conscience is what nudges me to go poke my head in her room and say "Would you like to go to the pool for a little while?". Which is always answered with an eager nod of the head. Or a "Do you want to go to the grocery store with me?" Eager head nod.
So when a day goes like the one last week, I feel incredible guilt. Figured maybe you'd want to hear about it?
We were driving to speech therapy; a weekly appointment with Molly's "boyfriend" Spencer and a few other adults that use augmentative communication. She LOVES this weekly gathering and they have all grown close as friends through the years. Molly was edgy that afternoon. She was making noises that were making me edgy. Or maybe I was the edgy one and she was feeding off of me? Anyway, I said to her "Molly, what is wrong? You have to tell me on your talker" (because I had NO idea why she was crabby). She turned on her talker and went into her classic spiel "Alana, Aubrey, Mallory" (these are 3 darling friends who we have camped with her whole life.) Molly says their names via her talker all.the.time. I'm never quite sure what she means by it: Do you want to see them? Call them? Go camping with them? Hike with them? Do you miss them? Or are you just thinking about them? Sometimes....miraculously...she will use a verb and say "hike"..or "camp" and then I know.
This time however, I wasn't as gracious. I didn't give her all of the prompts and help. I was TIRED of trying to decipher each and every word. I felt pissed that she couldn't tell me WHY she was edgy. To make matters worse, she then said "Zebra".
ZEBRA??!! WTF do you mean by ZEBRA??!! (I thought the WTF part but my southern upbringing didn't allow me to say it out loud ) You are edgy and you are thinking about a ZEBRA? Really?Here's what I DID sarcastically say: "Oh, do you want a zebra as a pet? Do you want to feed the zebra? Do you want to sleep beside the zebra (she hilariously said "No" with her mouth and shook her head when I asked this one). The obvious question that I know you ALL are thinking is "Do you want to go to the zoo to SEE the zebra?"...but I wasn't going to give her that one. I'm so mature aren't I? Because I can almost guarantee that that was not what she really wanted. Because then she went on and said:
"Dinosaur."
See what I live with? I play 20 questions with no winning answer at the end.
In one instant, I could feel myself spiraling. I thought "This sucks!!" My daughter is 19 years old and can't answer simple questions. We have worked so hard for her entire life to get her to be able to semi function in life and here we are STILL where she can't tell me how she feels. She can't clearly tell me ANYTHING!! And I am responsible for her FOR THE REST OF MY LIFE!! Her learning curve is so flat that it is straight as an arrow. The fact that we are still trying to teach her to cross the street safely is frustrating. Watching her level of confusion in music therapy as she tries to sequence 3 actions is sometimes hard to bear. I don't get how she STILL doesn't understand how to shampoo her entire head and not just her bangs? How does she not get that when we talk about it (and I help wash it) every.single.day??!!
I suddenly felt trapped. Felt like I might suffocate. This is FOREVER!
I know part of this reality stems from being able to watch my beautiful son grow, thrive and flourish. He is becoming a self sufficient young man who is making great choices for himself. He is entering his senior year and starts the college application process. He has made us so proud and scared all in the same moment with his decision to enter a military career and apply for the Air Force ROTC program. "I want to serve our country" (are not words you would have EVER heard out of my mouth at that age) but came straight out of his and I tear up with pride for that maturity. He will make a great leader and I can't wait to watch his next steps.
Things have come pretty easily to Jack. Not to say that he doesn't work hard (because he does) but juxtaposing a typical kid next to Molly's autism shows the glaring challenges that autism presents. Nothing is easy for her and yet she tries with all of her might to succeed. She works hard and rarely says no to trying.
So when I came home and was sharing my bad mommy moment with Brooke, he said "Well you HAVE spent a lot of time with her recently". Sigh. I felt so heard.
"But think how hard it is for her..." he continued. Ugh! And that's when I wanted to hop into my soon to be bought tiny RV and travel the country solo. He's right, I KNOW how hard it is for her and that's why I felt so guilty even acting that way. But sometimes I crumble. And sometimes I'm not a good mom. And too often lately I'm realizing that I don't get that next phase of life that all of my friends are about to have: an empty nest. I don't get to reinvent myself as I enter my 50's. I'll be Molly's mom and caregiver forever because she NEEDS me. And right now that freaks me out.
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| "Smelfie" (A Smethurst Selfie") at our family reunion at the beach. Molly is in back in blue. I'm waving. |
