Real Gains But Shapes Still Confound

Hello faithful family, friends, and followers and welcome once again to our shared journey. I hope your have all read Joy’s amazing and beautiful blog entry posted on Wednesday. If not, you can read it here. I am so very proud, so very thankful, and so very amazed at God’s grace and mercy shown us in Joy’s on-going healing and recovery. On May 1st of last year we launched into the intensive outpatient physical, occupational, and speech therapies at Courage Kenny Golden Valley. After the initial weeks of therapy, I remember coming home with a multiple page list of her upcoming appointments to add to our calendar, that list alone held 74 appointment dates/times - did I mention intensive?

But on that 1st day of May 2024, Joy had her initial speech and PT assessments. As we had hoped, PT went well, a lot to work on, but given the steady progress of Joy’s inpatient physical therapy, we were confident as we looked ahead at the gains to be made with new resources and direction. The speech assessment, on the other hand, ended in tears as so many of the inpatient and subsequent outpatient speech sessions had and did. The therapists were wonderful, but Joy’s language and cognitive challenges, at the time, seemed almost insurmountable, a least to Joy. Even after her intensive 3 weeks of inpatient therapy, at this point, Joy could say her first name and my name, but could not recall, read, or write reliably, her name, mine, the names of our children, her birthdate, her phone number, our address… You get the picture.

I know it was frightening and extremely discouraging for Joy to feel so isolated in her own head. She knew she knew things, but couldn’t connect them to words either heard or read. I guess I should have kept track of when speech therapy sessions stopped ending in tears, but it was a long, long time before that happened. However, Joy was faithful and undeterred by the emotional pain and frustrations of the task. She kept working and slowly or so slowly, things started to materialize. Numbers were recognized and written, letters of the alphabet, then the names of our children/grandchildren/granddog, the names of family and friends, her birthdate, her phone number, among other things. I know I have shared so much of this before, but reading Joy’s recent post catapulted me into memories of how far we have come and the grueling hard work Joy has done to get here.

Yet, as thoughtful, heartfelt, and insightful as Joy’s post is, each day we seem to confront one or more of the difficult “realities” of our new reality. During the lead up to the holidays, then prepping our house for sale, packing, moving, unpacking, and settling in, we left much of the formal “homework” of therapies on the back burner. We tried to get regular exercise and Joy kept up a rigorous reading plan as well as her knitting, crocheting, and embroidery. Now that we are settled in our new home, we are re-engaging some of the more formal homework assignments for PT, OT, and Speech. When we returned to the Tactus apps prescribed by Joy’s speech therapist, it revealed both a blessing and yet the stark reality of the cognitive deficits still needing work. As we reinitiated the use of the app, Joy was able to recognize significant gains which were a huge encouragement to her at a time when she has been more frequently experiencing discouragement at the pace of her recovery. She would even question if she was loosing ground cognitively and linguistically. We are both truly thankful for the definitive evidence of measurable realized gains provided by the app.

But then came the shapes… I have written previously about the surprise we had with the Tactus app initially when we discovered that, despite great gains in reading, recognition, and understanding, Joy was absolutely unable to recognize or name shapes. A circle, square, triangle, rectangle, star, diamond, arrow, were all a complete mystery, there was zero, nada, zip comprehension of any of them. Fortunately this time, despite once again learning that Joy still has little comprehension of shapes, she didn’t get too discouraged, since we confronted them after seeing the other recognized gains. At the same time, it can feel like some heavy lifting when you have worked so hard to make real progress and yet are confronted with the fact that the severity of your brain injury has stolen such basic and foundational concepts. And so, we are back on the learning track, with extra practice for those pesky shapes.

I share this, always with Joy’s permission, to illustrate the non-linear nature of recovery from traumatic brain injury and to encourage your on-going prayers for Joy’s physical, cognitive, and emotional recovery, strength, and well-being. We need and appreciate those prayers so much. It’s been a long journey for all of us and its still in its early stages if we consider the years ahead of us. Please know that we continue to pray daily for you collectively and that you continue to mean more to us than words can say. We are truly blessed and pray that our shared journey may bless you in some way as well.

With the current contrasting gains and set-backs we experience, sometimes daily, my mind goes frequently to Isaiah 61:3 revealing and assuring us of God’s desire and intent for us even in our most challenging times…

“To grant [consolation and joy] to those who mourn—to give them an ornament (a garland or diadem) of beauty instead of ashes, the oil of joy instead of mourning, the garment [expressive] of praise instead of a heavy, burdened, and failing spirit—that they may be called oaks of righteousness [lofty, strong, and magnificent, distinguished for uprightness, justice, and right standing with God], the planting of the Lord, that He may be glorified. (Isa 61:3 AMPC)