About 10 a.m. Monday morning I got a phone call from the office of Tony’s new developmental pediatrician. They had a cancellation for Tuesday, and were wondering if I’d like to take that appointment. Yes, yes, and heck yes! And then it hit me…I hadn’t filled out any of the gargantuan paperwork packet yet for this initial visit (It was over 20 pages of printed material). Ugh. Since the appointment wasn’t scheduled until February and I’ve had my hands a bit full I had put it on the proverbial back burner. And…I had schoolwork for my on-line classes to get to Monday. “The heart melteth.”

Tony was able to get his anxiety poo in the potty when we arrived at their office on Tuesday. I know we have been working on a lot of things, including doctor’s offices, but I wasn’t kidding when I said I wanted to cry after his Urology appointment in June. We couldn’t get him to sit for more than a minute (Whitney was with us), there was frequent eloping, he kept banging his hands on their walls, trying to climb furniture…let’s just sum it up by saying they considered scheduling next year’s ultrasound in the hospital setting.

But on Tuesday, my son did better than I have ever seen him do in a medical office setting. He sat calmly watching his movie and eating his snacks for most of the wait. He only tried to get up a few times and sat immediately when I asked him to. I felt like we looked almost normal for once. I was even able to get through some additional paperwork stress free- that hasn’t happened in years. I had a dentist appointment for him go so badly in that regard the clerk filled things out for me while I bounced Tony up and down on my shoulders. To have this wait of over half an hour go so well… “the heart melteth.”

And then time came for Tony’s appointment. While the doctor and I talked, he sat for about 7 minutes playing Monkey Preschool Lunchbox- and that was the last of his sitting. He deliberately dumped popcorn kernels all over her floor (as well as her cardboard building blocks), rolled on her desk a couple of times, jumped up and down on the lovely lavender upholstery of her chairs, chewed on her magnetic building blocks, tried to elope, and paced back and forth smacking his hands into her wall while throwing his chewelry. He flapped, avoided eye contact, refused to talk to her on his speech app by and large, and lined up his fruit snacks. Otherwise, he was pretty calm about everything.

You know, for one of Tony’s visits, overall I still thought it went amazingly well. He even got on her scale without jumping and screaming…which is a first for him in a medical setting. But I still apologized profusely (popcorn- it wasn’t pretty). In the midst of this the good doctor mentioned he really doesn’t have much joint attention (nope), he’s definitely hyperactive (can’t disagree with that), and if we don’t treat him for his ADHD his therapies won’t be as effective. Our son has a genetic disorder (Sotos) that comes with a lot of possible secondary conditions that aren’t a guarantee, but Autism and ADHD are both common findings and that appears to be the path we’re on. And thus began the discussion of medications for another condition. “The heart melteth.”

Part of me wishes her staff could have seen how the prescription drop off went so they could be duly impressed by how he waited in their office. He had lost all patience with his day by this point, so there was eloping, attempts to bang his head on the pharmacy clerk’s counter, rolling down the pudding aisle on his side (its a great thing WalMart has such wide aisles), a melt down at the check out line, and an attempt to eat dropped fruit snacks off the floor. Yeah, lots of people knew we were there for this trip. He’s done so well lately for public therapy trips, but two and a half hours at a doctor’s office was about all he was able to give Tuesday. “The heart melteth.”

I had discussed mixing the medication into Tony’s Greek yogurt after breakfast with his doctor, but Whitney recommended pudding since it is such a preferred item for him and sometimes he doesn’t want yogurt. The capsules had to be opened and sprinkled, because he can’t swallow that type of pill, and I then covered that with more pudding because if he saw the medication I knew he wouldn’t eat it. I was worried the taste would throw him off, but it was buried well enough the beads never contacted his tongue. Whitney, you are a genius!

The rest of the morning didn’t go so well. By the time we got to physical therapy with Ms. E, Tony was not feeling well with his medication. What ensued was a few very rough hours as he attempted frequent self-harming. I left his doctor a message for feedback as soon as I safely could. Once our little man calmed down, all I could get him to communicate was that the medicine didn’t make him feel good. “The heart melteth.”

I was so thankful his doctor did a great job of responding quickly and calling me back, ultimately recommended we try a different medication. After how he ended up feeling Wednesday, Tony eyed Thursday’s pudding suspiciously, but did eventually agree to take it. I sent Miss Emily a text, giving her a heads up about the new medication since we would be just starting music therapy when the effects hit. By the end of the session, she was noting he was calmer, more focused, and more cooperative. We looked at each other with tentative smiles and said, “This medication could be a good thing.” Whitney has noticed similar things in her time working with our sweet son, and we didn’t have a single attempt to flee at our grocery trip that afternoon. “The heart melteth.”

As I was trying to decide how I wanted to write about this week’s happenings, my thoughts coalesced around a phrase I had read in my morning scripture study from Nahum in the Old Testament: “…the heart melteth, and the knees smite together, and much pain is in all loins…”

If I had a line similar to the kiddo in The Sixth Sense that I could whisper dramatically, it would be “I see details.” I have observed my son carefully for six years now, and I recognized that Tuesday’s discussion with his doctor could go in the direction it did. Recognizing a possibility, and processing the emotions that come with it and what it means for both my child and our family is another matter entirely. So for the good and the difficult, I have chosen to let the phrase of another speak for me this week, because truly I have felt my heart melt time and time again over the past few days.

A Note About Expanding Diagnosis Lists

As I write our family’s story each week, I am aware that in our society we sometimes seem to find more value in a disabled kiddo who rises above every challenge and every diagnosis- whose story more closely approaches the resemblance of what is deemed to be normal functioning. I will never claim to tell you that is the history I write. Although some people see little reason to hope for anything good with the list of conditions Tony’s got going on, our son’s future has not been finalized. There are so many ways it could end up, but however it does there is value in it nonetheless. Whether or not he wins or succeeds by anyone’s standards, I think families of kiddos with his types of struggles need the societal compassion that awareness and understanding for these challenges brings.

Our little man has some skills that offer glimpses of hope justified, but for me, he doesn’t need to approach normal to find value in his life. I am his mother. I have seen his unrestrained delight when he plays chase or tickles…the glow in his eyes, the flash of his dimples. I have felt his love on those rare occasions he clamps his arm around my sides and gives me a two second bear hug. Both of my children infuse my world with joy, and that is very valuable indeed.