The tour guides.

**March is Cerebral Palsy Awareness Month. I plan to write and share and probably overshare here this month in an attempt to educate, and even celebrate the ways my family is unique. **

When I typed about my boys' diagnosis last week, I described things being thrown at you as you try and get your bearings after the spinning ride. We are 23 years in to our Cerebral Palsy journey and periodically, things still get hurled at my head that leave me searching for an English to CP language dictionary.

Early it was fast and furious: The boys would need OT, PT, Early intervention, AFOs, maybe hinged AFOs, IEPS, maybe they would require a CT scan to confirm diagnosis, ultimately we would have to wait to know where they would fall on the GMFCS.

I had no idea what any of this meant. I had majored in communication in college and was a writer by vocation. I thought I knew words. I thought I knew how to put words together. But in this world of cerebral palsy, the rules were apparently different. And though my husband was a medical student and the smartest man I knew, we were navigating a whole new dictionary of terms, words, goals for our children.

We began PT and OT -- I learned quickly that was physical and occupational therapies. Our PTs were energetic and immediately seemed to love my boys. I worked hard to determine my role at therapy. The hospital-based therapy was bright lights, sterile walls and a bit overwhelming for my little babies. But as Megan and LouAnn got to know the boys they learned how to make the environment calming for them. Megan always had the Elmo toys handy. Benjamin loved to reach and stretch toward his favorite muppet. And LouAnn, well she quickly learned that Mason loved an audience. What he struggled with in the PT gym, he did with ease in the hospital hallways where the probability of people clapping and cheering him on existed.

Our occupational therapist's clinic was outside the hospital. Her office a bit more warm, less-sterile-appearing. Or maybe it was just Susan. Susan had delivered her first baby the day the triplets were born. We shared a doctor. She recalled the moment every one began scurrying around because "the triplets are coming!" And so we immediately bonded. When I had watched her work with the boys for several sessions, my impatience got the better of me. Both she and the PTs worked so much on stretching, reaching but when were they going to work on sitting, crawling, walking?

Everyone kept telling me the boys had developmental delays. I thought therapy was to help them catch up. I mean, according to every dictionary I have ever read, delay means late, but delay doesn't mean never. Shouldn't we be working on those big things so that they could eventually catch up? Why then was no one doing that? I desperately wanted to be working on the big stuff. I desperately wanted the boys to catch up.

And though I was petrified of her answer, I finally asked Susan my question. I had tears that I could not control running down my face, as I quietly asked why we were constantly working on reaching for beads but never working on sitting, crawling, walking? She stopped and looked me in the eyes, tears running down her own face, as she said, "Carol, they have to learn to do this stuff first. We have to work on their strength."

Then she turned and got right back to work. 

It wasn't the last of my questions during our time working together. It wasn't the last of the tears. Susan walked me through those first two years of my boys' diagnosis. She taught me what it meant to have CP, she helped me understand the myriad of terms being thrown at me, and perhaps most importantly, she constantly reminded me to celebrate my trio. 

When we visited Minnesota to prepare for our move, the triplets played in the ball pit at a friend's house. Their not-quite-two-year-old brains decided that moving to Minnesota meant they would have a ball pit and they told everyone who would listen. 

And so when Susan showed up at their second birthday party, she had a ball pit in tow. She told me she couldn't stand the thought of them moving and not having a ball pit waiting on them. (You can read more about this amazing woman here.)

So while the diagnosis of cerebral palsy for my boys put me on a course I was wholly unfamiliar with, and hit me in the head with terms I had never before known, it also came with some amazing tour guides. In our journey, we have met therapists, doctors, surgeons, nurses, teachers, paraprofessionals, and personal care attendants, all of whom taught us something about our children, something about ourselves.

I can never thank them enough for helping me learn to catch all the things hurled our way. And then some.