Oscar-Go

Thursday was our last session with Minnie, Oscar’s physical therapist. She is retiring and moving to California to be with family. Minnie has been working with Oscar twice a week for the last two and a half years. She started just weeks after he was diagnosed with SMA.

Minnie is one of the most remarkable people I’ve ever met. Her dedication to her work is unparalleled to anything I’ve seen before. Minnie stops at nothing to provide for her families and her kids. She has infinite ideas and knowledge about positioning, stretching, strengthening, mobility, independence, and equipment, all of which one would hope for from any great PT. Minnie also has (or had-she’s slowly doling it out to agencies, schools, and families before her move) an incredible equipment and toy collection. She owned so many pieces of adaptive equipment that Early Intervention (Monroe County’s birth-to-three program) providers would go to her home to borrow things that agencies didn’t own. Strollers, wheelchairs, gait trainers, standers, high chairs, bikes, bath seats, adaptive chairs, wedges, riding toys. And yes, plural for all of these items. And if a child would benefit from something that Minnie did not by chance own, she knew who to call to borrow it or where to go to buy it.

When I was pregnant David and I had definite ideas about toys: they should be wooden or cloth, they should never involve movie characters, they shouldn’t make any noise unless they were musical instruments. Once we had Oscar we quickly realized that we might have to allow some plastic into our house but would still attempt to ban battery-operated noisy toys and movie characters. On Minnie’s first day she brought a large plastic farm model with a rotating base that, when spun, would sing a song, “The spotted cow says moo, the horse is brown and neighs, the yellow duck says quack, quack, quack, and won’t you be amazed!” It was loud and big and plastic and Oscar loved it. Minnie had him sit on my knee and use his toe to make the disk with the animals on it spin. He was fifteen months old and could barely get it going with his foot. He didn’t have the strength to kick but he was determined to try. And boy was making that toy sing good incentive!

At the end of that first session Minnie offered, no insisted, that we borrow the farm toy. Not knowing about her extensive collection, I was surprised and confused that she would leave a toy she might need for another kid with a family she had just met and really didn’t know, but she was convincing so we agreed. We would come to learn that Minnie had a basement full of toys (and I mean an entire room with floor-to-ceiling shelves packed to the gills) and this did not even include all the toys she had on loan all over Monroe County (which was surely at least double the toys she had stored in her home). You see, every where that Minnie went, she was thinking about her kids and what toys or equipment they would like, or would help them. She likes to think of herself as having a huge brood of grandchildren to care for and spoil. Two and a half years after that first PT session we can still sing, with great fondness and appreciation, “The spotted cow says moo…” in our sleep and we know that this practice of loaning toys is a small example illustrating Minnie’s enormously generous spirit.

Months after beginning work with Minnie, David and I were at Wegmans with Oscar in the shopping cart. We had stopped in the produce section in front of the lettuce when David and I each caught a motion out of the corner of our eyes. We looked down to see Oscar’s leg swinging. Surely the sudden stop of the cart had sent Oscar’s leg into motion. But the movement continued. And then the other leg started moving, too. Oscar was kicking his legs! He had never done this before. We were wide-eyed and giddy. Upon his diagnosis we had been told he would lose strength steadily over time. But here he was gaining strength! Two years later, he can still get his legs going in a pretty decent swing. This is only one of the many, many ways in which Minnie has helped Oscar gain strength and mobility in the last two and a half years.

After Minnie told us she was retiring I sent her an email asking her if the new PT would be able to look knowingly into my eyes and right down into my soul and with her look alone let me know she understands me completely and reassure me that indeed I am doing right by my kid even though I’m not a superhero. This is what Minnie does, at the moments I need it most. Minnie comes to each session ready to meet Oscar where he is on that day, understanding that a small child’s mood and energy can greatly affect his physical capabilities. But Minnie also comes ready to meet me where I am on that particular day. She understands the challenges and triumphs of being the mother of a child with significant needs. I have always referred to her as “our PT,” rather than “Oscar’s PT.”

Minnie consistently goes above and beyond. She has attended doctor’s appointments with us; come to our house on Saturdays to drop off equipment or examine a demo model on loan from elsewhere; sent and received text messages at all hours of day or night about adjusting equipment, Oscar’s successes, our concerns, scheduling; she even visited Oscar in the hospital on New Year’s Day. Minnie has told us about countless resources we would not have known about otherwise: Daystar (the special needs day care Oscar attended for a year), an affordable motorized bed so Oscar can sit himself up in bed, the warmest community pools in the area, which websites have the best prices for adapted toys or equipment. She has also given us countless ideas about how to adapt our home environment to best suit Oscar’s needs.

Minnie is incredibly pro-active. She is always thinking ahead to what Oscar will need next and how to stay ahead of SMA.  When we go to SMA conferences or read up on care of the SMA child, it is always recommended that the family has a strong team: a pediatrician, a neurologist, a pulmonologist, an orthopaedic doctor, possibly a gastroenterologist or dietician. Somewhere along the way a PT is usually mentioned, but rarely as a necessary component of “the team.” Minnie has been at the forefront of Oscar’s care for the last two and a half years. We are lucky that we have full confidence in Oscar’s medical team (and we really like them all, too)! But it is Minnie who sees Oscar every week. It is Minnie who notices the subtle changes. It is Minnie who is thinking of Oscar every single week, devising ways to increase his mobility and strength, to boost his sense of independence and confidence, to preserve and enhance his muscle and lung function through PT activities.

I could go on and on. It’s hard to know where to stop and which stories about Minnie to save for another day.  We are so thankful that she has set the bar so high, so that we can know how high to set our expectations for future therapists and also to have high expectations of what Oscar is capable of. We will miss Minnie tremendously, both as Oscar’s PT, and as the dear friend she has become.