Why Pessimists Don’t Wear Neon Pink Biker Shorts

I just heard a story about optimists and pessimists who took an exam. The pessimists were found to be more realistic. The pessimists scored just as they had anticipated they would. The optimists thought they did better than they actually scored. However, over time, the optimists surpassed the pessimists in that they were more motivated to continue with their ongoing anticipation of improved results.

When Wil was a baby, I was told that life will only get harder when he grows older. I understood what I was being told, but I could not find it in myself to view our life that way.

When Wil was 3-months-old, a physical therapist visited our house on a weekly basis to work with Wil and show me exercises to work on with him. Wil was what the doctors called “floppy” which meant he had low muscle tone. When he laid on the ground, his legs bowed out due to his low tone. Wil’s physical therapist told me about little lycra biking shorts with the inseams sewn together made just for babies with low tone. The intention is to hold the legs together to help strengthen them. Wil’s physical therapist happened to have a pair of these shorts that another family had given her to pass on to someone else. She said we could use them, but wondered if I would be bothered if they were neon pink. When she put them on Wil, we both burst out laughing!

Wil looked so cute in those bright, little pink shorts. The sight of him smiling up at me was all I could handle, and I so needed that smile then. Those little, neon pink shorts always gave the therapist and I a little chuckle and lightened the heavy feelings I had at the time. Wil’s diagnosis was still new to me. I had so many questions swirling in my head. When would Wil walk? Would he walk? Would he talk, would he read, what would his life look like as he got older? My twin girls were not even two-years-old at the time and very active. It was challenging to work with Wil and keep the girls occupied at the same time. I was so scared of falling behind on something knowing Wil was already developmentally behind, but the twins needed much of my attention, too. It was an overwhelming time to say the least adjusting to this new life. It may seem silly, but those neon pink biker shorts brought a much needed smile when Wil and I worked together on his gross motor skills, and the smile the therapist and I shared added to our bond.

When I asked Wil’s physical therapist when Wil would walk, she responded, “When he is ready.” There was so much ambiguity surrounding me, a concrete answer would have grounded me in a way. But there was no such answer available. With typical children, milestones vary, but not nearly as greatly as kids with Down syndrome.

Soon, I started to find ways to incorporate Wil’s therapy into our daily play, and the girls enjoyed helping. Though the date Wil would walk was still a big question in my mind as we delved into our daily routine, I found myself enjoying this process. The ambiguity was still there, but not the force it once was.

When Wil did finally walk, we all celebrated and the therapist even exclaimed that it was sooner than she anticipated. It was a very good day, indeed. But I learned something through this process. This excitement wasn’t just about Wil walking. Wil’s walking was also about the friendship I developed with Wil’s physical therapist. It was about learning how to take his therapy exercises that once seemed so overwhelming and blend them into play with Wil’s sisters. With time, with patience, with joined purpose, along with the help of bright pink neon biker shorts, we all celebrated in Wil’s walking.

After Wil walked, he began to excel in large motor skills, so we focused more on his speech and fine motor skills. The challenges do not end, they only change with time. So it is for all of us. Most recently, we have needed to adjust Wil’s course in school. He was on a high school diploma track, and now he is on the track to certificate of completion. The diploma track is just not the right fit for Wil. That fact would have hurt me greatly if I could have somehow looked into the future when Wil was a baby. Not today though. We have gotten to this point day-by-day-by-day, step-by-step, challenge-by-challenge, success-by-success. I am so proud of Wil and all he has accomplished. He reads, does double digit addition and subtracts with the use of a number line. We approach everything with great optimism. There are goals that have been greatly achieved, and others that need to be adjusted as we make our way through time. These adjustments are never time lost, only time learned. There is never giving up, only realigning and readjusting. Staying flexible while forging forward.

I don’t believe the pessimists mean-spirited when they say life is only going to get harder as Wil gets older. In fact, I think they are trying to protect me with their realistic views. But what they don’t understand is my enthusiasm is derived directly from the challenges. It’s in the day-to-day living of these challenges that I have discovered the creative gifts life delivers and that is what drives my enthusiasm. If that leads them to believe I wear rose-colored glasses they would be greatly mistaken. Why would I want boring, single-viewed lenses when life has already shown me it can deliver neon pink biker shorts?

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Snow First, Science Second

On Sunday, coming home from the movies, Matt was driving and Katherine jumped in shotgun, so I sat in the second row car seat with Wil and Elizabeth hopped in behind us. As we motored on home, “Let It Snow” came on the radio and Wil started bouncing around in his seat, then I started bobbing my head, then he started bobbing his head and then Elizabeth joined. We were totally rocking it out in the backseat to that old classic and Matt and Katherine looked over at us from the front seat and rolled their eyes in mock embarrassment. Ahhh, this is what it’s all about, I thought to myself.

Then just yesterday, I met a woman whose daughter is a neo-natal nurse. She told me her daughter wants to adopt a child with special needs. She said it pains her to see moms just walk away from their babies when they learn of their diagnosis. That fact pains me greatly too.

When Wil was born, I was scared and I cried for all that I had “lost” in a typical child. It is natural to grieve our lost expectations. But then, why do we not build up new expectations? Why do we just walk away? I’m no better or worse than anyone else. The only difference is I was so tired of crying about my baby. I wanted so deeply to smile about my baby. And in that process I discovered whatever I look for, I find.

I found so much to love, laugh and smile about. There are the hard parts, too. Elizabeth is fond of saying, “Wil has good days, and bad days, then he has Wil days.” But Wil days are what make our days so much more amazing. The deeper the challenges, the greater the rewards. I notice every single new word Wil says, every single new step forward he takes and I feel a deep joy in all of it. Wil’s life is a joy and reminds me of the pure power of the simple pleasures in life. Wil does not get out of bed unless I give him a hug first. That simple fact sets an upbeat tone for the day. After he brushes his teeth, he says, “Mom, breath.” Then blows his soft, minty breath to me and I say, “Oh, minty!” and he laughs and gives me a hug. We do this every day and it never gets old. So simple, yet so powerful.

Instead, the medical terms come first when our new babies are born. Science is tangible. Science is explainable. Science is very important. But so are Let it Snow moments. I believe even more so. Our feelings and emotions may not be as tangible as science, but our feelings are what rule our worlds every single day miles above science. When I changed my feelings about Wil’s chromosomal differences, that changed my life. It wasn’t his chromosomal make-up that changed, it was the way I looked at it that changed. I want to bottle up these “Let It Snow” moments and share them with new moms just a clearly and tangibly as those 47 squiggly chromosomes show up on a piece of paper. But emotions and feelings aren’t meant to be bottled. They are meant to be lived, felt, experienced, absorbed and learned from. They are not definitive and finite, but a fluid, expanding and fulfilling component of our life’s journey.

I picture myself over 10 years ago, laying in the birthing room, opening a folder full of medical terms, tears streaming down my face. Wouldn’t it be glorious, if instead, I opened that folder and in front of the medical terms, placed before all the papers, the sounds of “Let It Snow” came pouring out, and in all that I could not see, but could feel, the beginning of a new journey that lies ahead?

Let It Snow, Let It Snow, Let It Snow