When people ask me, “how’s Mark doing?”, that has got to be the hardest question I’ve ever been asked. I’m a very open and honest person, so when the socially expected “good” rolls out, it’s usually met with a surprised “oh really?” look from the person who asked. And I have to admit, I have the same reaction when I hear myself say it. So I suppose it depends on your definition of “good”. He’s no longer spinning in circles, but he still chews on everything, toys, books, and our furniture, and at night before bed, he runs from room to room stomping his feet and screeching like a pterodactyl. I attended his class field trip to the pumpkin patch last week, and while the other kids, who also have autism, mind you, are seated paying attention to the opening circle time activity, Mark lost it because he wanted to ride in the wagon that contained all of their supplies for the day. Imagine that feeling, the only mom in a sea of special needs families wrestling an alligator in the mud and leaves because he can’t ride on the wagon, and he doesn’t know why.
Communication eludes us most of the time, though he has graduated to grunting in the general direction of what he wants and smiling vibrantly when we finally figure out the object of his longing. He has stopped crying during class, can hand his teachers a picture of what he wants in order to receive it, and seems to be on the brink of verbal communication, or so we hope.
I received the following email from Mark’s teacher this week,
This was our bright spot amidst the chaos that unfolded this week. Yet, even though we should be celebrating what seems to be his first word, we are cautiously optimistic. Mark has been in a variety of different therapies now for over a year, spending hours every week working on the most basic and simple concepts to build skills that were never there. About six months ago he would babble “mom, mom, mom” but then it disappeared never to be heard again. Such is the reality of verbal apraxia, one of his diagnoses, which is the epitome of “one and done”. And now, we are hearing that he said go. I have yet to hear it myself but I am waiting with bated breath to hear him intentionally communicate with me.
Though I wish that I could bask in the beauty of Mark’s recent progress, we were presented with a variety of daunting challenges this week (some of which I am not ready to write about.) One of them was Mark’s insurance, which really is the bane of my existence. Without writing a novel about the nuances of coordination of benefits for dual covered individuals, it boils down to us having to pay thousands more next year due to increased out of pocket maximums, and the billing cycle of Mark’s ABA company in comparison with Kennedy Krieger, neither of which I have any control.
On Friday, since it was the 13th, Ike sent me a text that said “It’s Friday the 13th, I hope nothing unlucky happens to us”. I just laughed. And of course, later that evening there was another plot twist to our family’s story. When I stopped by my parents’ house, my Mom informed me that her cancer case was not the equivalent of an oil change like the radiologist at the John R. Marsh Cancer Center had suggested. Johns Hopkins notified her that her HER2 score was positive, even though they anticipated that it would not be. This means that Mom’s cancer is a bit more aggressive than what we originally thought, which also means chemo. So there it was. Thank you, Friday the 13th, you really outdid yourself this year.
In all seriousness, though we are disappointed at the thought of Mom enduring chemo and dealing with all of its lovely accompaniments, we do know that she has an excellent prognosis. We are filled with hope that once she gets past treatment, she will be free from the mental grip of cancer and move past this season of her life.
Mark will improve, Mom will move beyond cancer, and hopefully, I will have much lighter things to write about. Speaking of, Jilli got a wad of gum in her hair yesterday, which timed out perfectly with her appointment to have her “Alice in Wonderland” hair chopped. So here’s our little lady with her new do 🙂
We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down but not destroyed.
2 Corinthians 4:8-0.