Wednesday, March 3, 2021

Take a Spin.

**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. **

Close your eyes and imagine you just stepped off Alice's Teacup ride in Walt Disney World. Your feet are unsteady. You head is spinning fairly substantially and before you can get your feet firmly planted under you, someone starts throwing hard things at your head. Really really hard things. And if that were not enough, simultaneously someone is reading Alice in Wonderland really loudly over all of this, and periodically asking you if you understand.

You are close to understanding how it feels to have your child -- or for us children -- diagnosed with a long-term disability. (You can read our diagnosis story here.) 

But here's the thing, even when my head was swimming, even when my emotions were rolling down my face,  I knew two things to be utterly and completely true: My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same. And the other thing I knew: my job had not changed in the least. I was still to love them, support them, encourage them and fight for them and with them so that they could reach their dreams, so that they could reach their goals, so that they could be everything I knew they could be.

Cerebral Palsy did not then and does not now make them less than. And it didn't make their dreams less than either.

And as their mother, I knew I had to firmly plant my feet. I needed to shake off the whirlwind of emotions. I needed to keep doing exactly what I was doing the day before -- loving them, taking care of them, keeping them healthy. I knew they had already changed me for the better.

I would soon learn just how much. 

Carol - The Blessings Counter

Monday, March 1, 2021

A Hit and Run Diagnosis.

**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. **

The boys woke up with a fever the morning of our appointment with the developmental pediatrician. It was a late winter on a Chicago morning, and I knew it was just a simply cold. I wasn't that concerned. What I was concerned about was possibly missing this appointment that had been hanging in the horizon for months. 

My new friend, Jill, and I were due on the exact same day -- July 7. We had met at orientation when both she and her husband and Wade and I were training to be resident heads (dorm parents) at the University of Chicago. Grad school, work, and the role of RH kept us both busy in our own circles but we had bonded over the shared due date, of course.

When I went on bedrest at 19 weeks, she was one of the first to bring a meal to us. I was so thankful for her friendship.

And then I spent months in the hospital before Benjamin, Mason, and Claire would STILL born almost 12 weeks before their July 7th due date. 

Finally, when in August, Jill and her new baby, her older son, the triplets and I got together (Jill delivered on July 7 exactly!), I was just delighted to have a friend who was on the same page. And for a short sweet time, we were. 

We discussed rice cereal. And then we coordinated what foods we introduced and when so we could discuss any reactions.

We made little Halloween costumes for the four and had a sweet little photo shoot with our babies.

She drove us in her mini-van to the airport to pick up Grandmar for Thanksgiving because we couldn't fit Wade and I, the triplets AND Grandmar into our little Honda Civic!

It was a sweet friendship and as still a relative-newcomer to Chicago, and a brand new mom, I was immensely grateful.

And then one day, my new friend put her adorable bundle of joy on the floor and he sat up. He sat up all by himself.

Not one of the triplets was sitting up yet. Not one.

I tried so desperately to convince myself that it was because we had not been working on it. 

I asked my pediatrician about it immediately. She assured me that premature babies often take longer to reach milestones. She told me not to worry.

But even as Claire began to reach milestones, the difference in Jill's son and my boys became more and more telling. The gap between their motor skills more and more frightening. The reality staring at me as the four of them played together, more and more painful. 

And so I began to make excuses for staying home. I began to make excuses for why I couldn't go to the park. I began to make excuses to avoid my friend altogether. And in the avoidance there was just aloneness.

And so the appointment with the developmental pediatrician had so much riding on it: any explanation for the milestone delays would help. Any explanation would give me the courage to be around my friend again. Any explanation would give me hope that our future was not full of so many unknowns, so many uncertainties.

"Of course these boys have Cerebral Palsy," Dr. Developmental Pediatrician said without even touching my sons. "What did you think I would say today?"

He would offer no hope. He would offer no explanation or information. He simply spewed his diagnosis and left us to gather ourselves and our emotions. It felt like we had been hit by a truck. And the truck kept going. Our diagnosis story is just that -- an absolute hit and run.

All these years later, I am embarrassed that I could not find the strength to continue my friendship with Jill. But in the days following the diagnosis, we left the apartment for therapy appointments multiple times a week, we left to eat with our students in the dining hall, and we left for the necessary doctor appointments But otherwise, we stayed home.

Home was just so much easier. At home with my crew I could see how amazing my trio were. I could recognize their gifts and strengths and talents without the constant comparison with other babies, without the constant conversation of "what milestones has baby reached today?" over and over and over again. 

Our address for our apartment in South Chicago was Stony Island. And in those days following the initial diagnosis, we often remarked that we were in fact living on an island, an island occupied by only two adults and three of the cutest one-year-olds ever.

(Come back later this week for more of our story!)

Carol - The Blessings Counter

Friday, February 19, 2021

A letter to Playmobil.

Dear Playmobil,

My children are grown -- three adults and a teenager -- but I ordered toys from your company this week. A dear dear friend alerted me to your CityLife set and the boy with crutches. When I went to your site to see this wonder for myself, I saw the wheelchair set. I promptly ordered them both.

See, once upon a time, completely unprepared and without time to educate myself, my family was thrust into a world of leg braces, walkers, crutches, and ultimately, wheelchairs. Years have passed since those early days. But I can still feel in my gut the strong overwhelming need to color these as tools for my sons -- tools for achieving goals rather than objects that might make them seem different, or impede them in anyway....

The first time they were fitted for orthotics (leg braces), Mason got red padding, Benjamin blue -- as triplets they each had a color and the boys chose accordingly. But both had ribbon with puppy dogs on the velcro fasteners. And so instead of orthotics (toddlers couldn't really say that well) or braces (yech.), I called them "puppy dog shoes". I wanted to spin those little hard plastic supports into something desirable, something fun. Years later when the boys had graduated to having super heroes on their orthotics, we still called them puppy dog shoes.....

Likewise, when the therapist brought two little forearm crutches for Mason to try, I knew immediately I didn't want to use the word crutch with all the negative connotations. And so we called them Power Sticks. Even in adulthood, Mason refers to them as his sticks....just a shortened version of our lifelong moniker for them.

As eager as I was to rename our equipment to give a positive spin, I was equally frantic to find positive examples of people using puppy dog shoes, power sticks, wheelchairs.  It was almost impossible.

Franklin the Turtle had a friend who used Power Sticks. I purchased every single book I could find about that turtle in the hope that his friend would appear. We learned McDonald's had miniature Barbie dolls in their Happy Meals and one of these used a wheelchair. We sent our grandmother to McDonald's for her lunch every day until we acquired the toy. And we stumbled across a Rescue Hero action figure who used a wheelchair. We have kept that toy to this day.

So when your toys arrived in my mail today I cried. I want to send them to every child I know in an effort to normalize power sticks and wheelchairs. But I don't want to stop there. I want to hand them to every mom whose child has received a diagnosis that has whisked her into a world filled with an assortment of letters of the alphabet (CP, PT, OT, MRI, CT, ECG....) that probably meant little to her before but now mean everything. 

And while I am wishing -- can I ask you to keep going? I love the set -- the therapist pushing the wheelchair gives me an Occupational Therapist representing the triplet sister who is driven to help other families like ours. And perhaps the cute doctor with a ponytail will be my baby girl, Cate who wants to work with premature babies like her siblings were (she's only 15, so she has room to grow and learn, and change her plans.). 

But guess what? Young people in wheelchairs do so much more than go to therapy! 

Sometimes they go to college, sometimes they perform in plays, sometimes they write the plays, sometimes they change the world.

And young men with power sticks? They can use those sticks for impromptu microphones, they can go on archaeological dig sites, and they can leave the world better than they found it!

So thank you, Playmobil. Really. You have made me so happy. But please don't stop now. Please. I am begging you to use your toys, your creativity, your platform to spread awareness. You have an opportunity with these toys to show that there is power in power sticks! You have the chance to show there is adventure in wheelchairs.

I can't wait to see what you do next!!!

Carol - The Blessings Counter