It’s been just about two weeks since I last wrote, and in many ways, we’ve fallen into a new normal rhythm.

Speech continues to be John’s biggest challenge. The more I learn, the more I realize how much of that challenge is his apraxia of speech — he knows what he wants to say, but his brain has difficulty coordinating the movements needed to make the sounds come out.

Because of that, I’ve really started honing in on individual sounds when we practice together. This week we’ve been working on F, P and T, paying close attention to where his tongue and lips need to be and how the air needs to move. We use flashcards and repeat words and sounds over and over.

And John practices constantly.

I’ve also changed the activities he does in Tactus and Constant Therapy to focus much more heavily on expressive language — completing sentences, matching sentences to activities, identifying sounds within words, and anything else that makes him work on getting language out, rather than simply understanding it.

And words are coming.

He has nailed down “Nonnie.” He has nailed down “monkey.” He can repeat over 50 words and sounds and the list just grows daily. I got him a coffee this morning and he said, “Niiice!” His curse words, naturally, are coming along beautifully. 😂 And this morning he was working very hard on “Franklin.”

His receptive language continues to be incredibly strong. I would put it somewhere around 80–90%. He generally understands conversations around him, even when people are speaking at a normal, fast pace. Occasionally, if he is intensely focused on something, I need to say his name a couple of times or touch his arm to break that focus and get his attention. But once I have him, he understands.

His written and typed communication is also becoming more well-rounded.

We hit the two-month mark on September 10, and that morning I woke up to a note John had written me.

It’s a moment I will hold onto.

Two months after a massive stroke, the man who still struggles tremendously to get spoken words out was able to sit down and find another way to tell me what was inside his head.

Right now, we’re in a little bit of a holding pattern with formal speech therapy while we wait for a Lingraphica AAC device/app to arrive, which is actually supposed to come today. In the meantime, I’ve developed a new routine of reaching out to specialists who work specifically with acquired apraxia of speech — the very focused work of sounds, repetition, tongue and mouth placement, and motor planning.I reach out.

Then I wait. I reach out again. Then I wait some more. Sometimes people respond. Sometimes they don’t.

If we find the right specialist or program, it will most likely be out of pocket. That is exactly the kind of thing I plan to use the GoFundMe money for — additional specialized therapy that can help John work specifically on getting those sounds and words back.

I’m also researching intensive programs, such as Spaulding, where John would attend 4 days a week, 25 hours in total, for 4 or 6 weeks straight. It’s very expensive, but if they say it will help, and he’s willing to go, we’ll do it.

We also finally saw John’s neurologist at Mass General on September 9, and we both really liked her. She spent a tremendous amount of time with him, evaluating his speech, vision, peripheral vision, reflexes, strength and sensation. She spoke directly to John, looked him in the eye, gave him time to respond and treated him with patience and dignity. She even had me pull out my laptop so she could look through his MRI images when she realized they weren’t yet available in their system.She encouraged us to continue putting as much energy as possible into speech, particularly during this first six months to a year when the brain has such tremendous potential for neuroplasticity and recovery. That reinforced my determination to keep searching for people who really understand the motor-speech piece of what John is dealing with.

But life is not all therapy, doctors and flashcards.

Last weekend was Labor Day weekend, which meant some of our favorite traditions.

Saturday morning, John woke up and decided he wanted to go to brunch at Chill and have an Irish coffee after he mowed the lawn and weed wacked the yard (see image). He is allowed one drink, so off we went. Later that day, we went to the Greek Festival, where he got his annual lamb shank.

The next day, his nephew Derek came with his daughters, Piper and Kennedy, along with Kennedy’s best friend Charlie, and we went to the Labor Day parade — another annual tradition.

It was just really, really nice to feel normal.

I woke up Tuesday to find a tower of toilet paper in the bathroom: John’s subtle hint that he wanted me to put it away. See? His humor hasn’t changed.

We’re still riding the waves of emotion.

But, the waves are smaller now.

Sometimes John is trying desperately to tell me something and I simply cannot figure out what it is. I can see the frustration because the thought is completely there, but he can’t get it out. At times, it must feel like being locked inside.

And sometimes the wave is something ridiculous — like driving to one CVS to pick up his prescriptions, discovering they’re actually at the other CVS, driving there, and then finding out that only one of the prescriptions we needed was ever called in.

Those things can still knock us around.

But we have more stability in our sails now.

We’ve learned that a bad hour doesn’t necessarily mean a bad day. And even when it is a bad day, when we go to bed at night, we can say to each other:

Tomorrow is another day.

And when we wake up, we start again.

Two months ago, I truly did not believe I could do this. I didn’t know how we were going to live inside this new reality. I didn’t know if I could handle it, and I certainly didn’t know how the two of us were going to figure out how to do it together.

Now I know.

We can.