Huge Small Victories

IMG_5358This weekend we went away for Grayson’s 13th birthday.  I definitely wasn’t in a celebratory mindset going into the weekend, as we had gone through multiple mind changes and so much deliberating about where to go, who should be included, where we would eat at, what we would eat, what the hotel would be like, etc…etc…etc…

The small farm-to-table restaurant was delicious, but did not have “normal food.” There were multiple breaks where Grayson left the restaurant to calm down, and several episodes of concealed (but silent) tears beneath his tightly drawn hoodie while hiding his head underneath the table. Although he tried bites of everything I asked him to, his dinner basically ended up being the “normal” gluten, dairy, egg-free cake that I made for him and brought from home.

The next morning at breakfast, he walked up to our server to ask for his drink by himself and she patted him on the shoulder as he turned to walk away. It was this small, but monumental event that changed my dutiful weekend into a celebratory one, filled with gratitude, amazement and a quiet but firmly substantial joy. 

Any parent that has a kiddo with sensory issues, knows that a touch from a stranger has the potential to turn into a full blown meltdown. But on October 27, 2018, Grayson’s 13th birthday, he didn’t flinch. He didn’t even seem to notice that a stranger had touched his shoulder. 

I was reminded of being in a similar hotel in Missouri approximately 11 years ago. Grayson was sick and on prednisone and a complete mess. He was red-faced, screaming, and asking for juice in the hotel restaurant. He then proceeded to hurl the full cup of juice all over the floor once he received it. This was the same weekend that he bit his new baby sister’s toes and made her bleed for no apparent reason at all.

I also remembered the first time I tried to take him swimming with his siblings at the community rec center. After his screaming and crying calmed down, he proceeded to sit on my lap and repetitively buckle and unbuckle this life jacket for the duration of our time there. 

But on his 13th birthday, we went to a hotel and a new restaurant, and a monstrous skatepark with huge ramps. He didn’t have a melt down.  He asked for help from strangers when he needed it.  He navigated his way through the skatepark while we sat and watched and he tried new things and worked through his fears with the skills and coping mechanisms that have been taught to him by angel-teachers through the years. 

On the morning of his birthday, he wrote me this note, using the voice-to-text skill that was again given to him by teachers as a gentle accommodation when writing by hand was hard for him…IMG_5346

For any parents struggling through a brutal introduction to life with a special needs kiddo…it can get better. The progress is slow and often imperceptible, but the payoffs are immeasurable. I have learned more from him than he could ever learn from me, and although I have questioned over and over if I am the right mom for him, I know beyond a shadow of a doubt that he is the right child for me.

“Love…bears all things, believes all things, hopes all things, endures all things.                     Love never fails.”                                                                                                                                    I Cor. 13:7

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Sail On

imagesIt is said around the time that Christopher Columbus set sail, that the English pirate Drake was raking Spanish holdings up the west side of the Americas.  As Columbus had sailed into the unknown, his fearful crew was allegedly on the brink of mutiny – mutiny, rather than come to the edge of…whatever.  Columbus, in this perilous atmosphere, made a stark entry each day in his logbook: “Sailed on.”

More often than not, were I to keep a logbook, I think that my entries might be quite the same, as are my days.  Wake up…work, kids, clean, errands, food…sleep.  Repeat. “Sailed on.”  When I am honest, there are often times that I find myself questioning, “Is this all there is to life?”  I’m convinced that monotony must be the cause of many mid-life crises.  We get stuck in the rhythm of our days, realize that life could realistically be half over, and feel a desperate need to break free from our own restraints, explore beyond the boundaries of our own boredom.

However, we all too often live our lives looking off into the horizon for the next great thing…marriage, a baby, a promotion, vacation, retirement…we are looking to “arrive” and missing the journey.  The thing is, we don’t know what lies on the horizon.  We don’t know if tomorrow will even arrive, and if it does, we don’t know if it will carry promise or catastrophe. We might quickly find ourselves longing for the boredom and monotony of yesterday.  Obviously, the key is to live with gratitude, finding value and joy in the day-to-day.  But I would also propose, as I struggle to live this reality myself, that we should not only strive to find joyful moments in the tedium, but also learn to lean in, settle in, relax and embrace the restlessness of simply sailing.

Just as it is often impossible for a ship to perceive forward movement on a vast sea without any landmarks, we too are often unable to sense any inner growth or progress in life.  But if we can accept and trust the process, the journey, the Captain, we will at some point be able to look back and see that it was all for our good…the sun, the storms, and the endless stream of days upon days.  So for now, I prepare myself for whatever the day will hold.  I’m sure the range will be vast.  And tonight, I’ll settle in and close out the day with another mental entry, “Sailed on.”