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.

There is a void in my world and I can't quit crying.

The triplets were nine months old when we started Occupational Therapy. Today, 20 years later, I remember every detail. The therapist introduced herself to me as Susan. She told me she had known of us since the day the triplets were born because she was down the hall in the hospital waiting on their birth to deliver her own firstborn son with our shared doctor.

I felt immediately drawn to her. And I could see her affection for my three from that very first minute. I assumed that day that it was the fact that her son shared their birthday. I know now she made every family feel that way.

Twenty years ago, I had no idea what therapy should look like. I had no idea what the goal might be. What the exercises were for. Or what I could hope to see during and after.

I had no idea.

I watched Susan for a couple of sessions. She kept holding beads above the boys' heads one at a time. I didn't understand. Beads? For my boys? They couldn't care less. (Claire on the other hand loved those beads. We would get home and find several chains of them hidden in her diaper -- every single week.)

During the third session I got my nerve up and asked why in the world she kept trying to get them to grab those necklaces?

She never stopped urging the boys to reach for them as she gently looked at me and explained, "We need them to reach across mid-line, Carol. They won't meet developmental milestones until they learn this skill."

Reach across mid-line? Is that something any other mother ever even realizes is a milestone? I had never heard it talked about and yet, here we were completely focused on it.  I took a couple of deep breaths. I remember trying to find the words, trying to find the nerve to ask what I desperately needed to ask.

"But when will you work on big stuff? When will they learn to sit, to crawl, to pull up?" I stammered unable to control the tears coursing down my cheeks.

I will never forget Susan's response -- never. She never took her eyes from mine, she didn't try to hide the tears coursing down her own cheeks, as she gently explained that reaching across mid-line was imperative to the other milestones. She said the boys had to learn that first.

We both wiped our tears and looked at these two adorable boys with a new determination.

We never worked on those big things I was so desperate about in our first few sessions. We moved on to stacking blocks -- I'll never forget the way we celebrated when Mason stacked three together.

Susan worked with Benjamin and Mason weekly until we left Chicago for Wade to do his residency in Minnesota when the triplets were 26 months old.

Susan came to their 2nd birthday party. She came with a huge package decorated with a bow. A HUGE package.

The triplets had returned from a visit to Minnesota telling her all about the ball pit they played in. At almost-two, they very much equated the ball pit with Minnesota.

Susan's HUGE gift to my three -- a giant ball pit to be assembled as soon as we got to our new home.

"I couldn't bear the thought of them getting to Minnesota and not finding a ball pit!" she explained, as we hugged and thanked her over and over.

Seven years later, I called her when Cate reached across mid-line to grab a toy I was holding. "I didn't even have to work at it, Susan!"

We cried together.

And a few months later when that baby girl stacked five blocks into a tower. I called her again. I couldn't contain my delight.

She came to visit me not long after that. Benjamin and Mason's first OT, my dear dear friend, had cancer and her girlfriends brought her to the desert for a girls' getaway. I sat with her and just enjoyed being in her presence again. I whined about not losing the baby weight and she gently reprimanded me to remember that was not important.

We talked about her amazing boys -- she had a second son after we left Chicago. And all the things she hoped to do with them and for them in their lives.

She encouraged my children and at nine, the triplets felt the love they actually remembered from those therapy sessions as little bitties.

I have checked in with her through the years. Always delighted to get the Christmas card. I had assumed after all these years that we could say she beat the cancer. I was so glad.

But this weekend I learned my precious Susan earned her heavenly reward. She died in May this year and I had no idea.

Oh I am so sad. I have told people for years that without Susan walking me through those first two years I would not be the mother I am today. I would not have known how to meet the challenges head-on and urge my boys to work through and overcome. I would not have known.

Without her ability and willingness to cry with me, to love my children, and to hold me through those first two years, Wade and I would have felt all alone.

And without Susan, I might have missed the importance of play, of being children, of having the best ball pit in the whole state of Minnesota!

Oh my friend, I know heaven is a greater place with you there.

But I wanted you to be here when Benjamin graduates college -- turns out he can stack paragraph on top of paragraphs and make the most beautiful stories you can imagine!

Oh I wanted you to be here when Mason graduates college -- Susan, he can take the smallest shards of pottery and record knowledge of entire societies!

And most of all Susan I really wanted you to be here when Claire becomes an Occupational Therapist. She desperately wants to give the hope YOU gave to families. You are her inspiration.

Thank you Susan. Thank you. thank you for helping us all learn to navigate the world of Cerebral Palsy. And thank you for encouraging all three of those once-itty-bitty-babies to reach for dreams way bigger than those purple beads we used to work so hard to get them to grab!

Rest in peace, my dear dear friend. We will never cease thanking God for your life.