Friday, April 14, 2017

It's Difficult to See the Blessings Through Tears

Mom and oldest son-Easter 1993

Holidays always elicit mixed emotions for me.  I often use holidays as a yard stick-a measuring implement to gauge the progress of my two sons.  Photos from past years stir up feelings of happiness or even sadness, good times or not-so-good times, making it difficult to immerse myself in the blessings of each passing year.

When our oldest son was just learning to walk, around the age of 2, I ignorantly imagined that he was ready to participate in a childhood rite of passage--dying and hunting for Easter eggs.  At the time, I remember thinking how wonderful it would be to organize the egg dyes, each one mixed with care, prepared in little matching plastic cups, ready for him to patiently dip each egg and wait for it to magically turn a bright color.  I purchased the necessary items, methodically prepared each cup, dropping in the little tablet, mixing it with the vinegar then stirring to reveal a new color.  I put a drop cloth on the floor, knowing a toddler could wreak havoc on a floor, me smiling in anticipation of what was to come.

The moment that I plucked our son away from his spot in front of the television, watching his favorite program, he began to wail.  I cradled him close to my body to reassure him that my idea would be much more fun than whatever he was watching, I was sure.  He quieted some. I effortlessly shifted my grasp to high under his armpits, as all Mothers learn to do, bent his little limp body to slip his legs into the highchair, and moved to set him down.  Sometime during the split-second maneuver, he flailed his arms, knocking over the perfectly placed cup of blue dye.  It fell to the floor onto the smooth cover, spilling over onto the hardwood floor.  As it fell, I inhaled sharply in a startled gasp, causing him to start, resuming the ear-piercing wail. 

My mood and my determination plummeted.  My disappointment rose to the surface. I paused, as I sat next to him crying, evaluating my own motivation and reasoning.  Nothing seemed fun about that moment at all.

Every emotion possible floods back to me as I hold a photo from Easter, 1993.  I am bent over attempting to convince our oldest to want to participate, search for eggs and to smile.  My own expression is hidden, but I can remember feeling a bit hopeless at my failed attempt.  His expression is not one of fun, either.  His expression exudes uncertainty. He was still in a horrible phase of extreme fear at the mere sight of any kind of grass or lawn, so I chased him around the patio.  He had no idea what we were doing when it came to searching for eggs.  He didn’t even like to eat eggs!  My hand was completely guiding him into some kind of unknown territory that simply scared the crap out of him. Nothing even remotely close to the word fun.

Another photo from Easter week 1997 elicits another memory completely.  My husband, Chris and I, sit relaxed and smiling in a little restaurant in the center of Paris, France.  He sits handsomely in his new suit, purchased just for this trip, and I, leaning toward him on his left, wearing a brown fitted dress with matching jacket, both of us smiling wide and looking our best. The photo appropriately gives the feeling of a relaxed evening among friends, sharing wine and good food.  On both sides, we are surrounded by some of the greatest minds in the world of Fragile X Syndrome, a genetically transmitted cognitive disability that both of our sons had been diagnosed with some six years earlier.  As I stare at the image, the emerging emotion is one of utter warmth.  Why would such a photo representing a devastating diagnosis, ever bring on such a positive emotion?

After six years of grieving, struggling, and questioning all things on the earth, this one single week proved to me that we were not alone.  We met professionals and families alike that knew what Fragile X Syndrome was. We were welcomed into the homes and at the tables of families just like ours, albeit in the romantic surrounding of Paris. They’d all had similar stories to tell, and they all shared them us.  We learned that there were Doctors that cared and sweated and aimed to help us.  I shared our family’s story.  The audience applauded with a look of familiar sadness in their eyes. 

Now, here our family is, 20 years later.  Easter weekend is once again upon us.  We’ve learned many lessons over the years, mainly how to make it meaningful for our family and do it in a way that makes sense for our very adult sons. 

Many years ago, I threw away all of the paraphernalia associated with egg dying, knowing that it wasn’t necessary to mark this holiday with an egg hunt.  The four or so years of tearful photos of both sons proved that point loud and clear.  So, we moved on, doing what wasn’t “typical” in order to live a happy life for us—not as dictated by the convention.  Yes, it was sad for me in the early years, seeing photos of other children with broad smiles on their faces, holding little baskets, dressed in finely pleated costume, as they bent to retrieve the treasured colored egg.  That picture is not a happy life for us.

This year, we planned the usual dinner in the dining room with napkins on laps, the air filled with smells of yummy choices that I have prepared with care.  But….there will be one new addition. 

About a week ago, as we reviewed the week’s upcoming events with our sons, as we always do, listing Easter and dinner and visitors, we had our own surprise.  Because it is helpful to alleviate any anxiety for our guys, I rattled off some of the familiar things to give ease to the dialogue; ham, potatoes, deviled eggs, jello salad, rolls, coconut cake, sit in the dining room.  I was met with the occasional, “Yeah”, or “Mmmmm” as I listed off each item.

In a surprising twist, our oldest who has limited verbal skills, immediately responded, “Eggs, there!” (pointing to the back yard)

I looked at Dad, who seemed as surprised as I was.  I looked at our son with that hopeful expression on his face, and said, “You want to hunt for eggs in the back yard on Sunday?”

He said, “Yes!” with all of the fervor he could muster.

I said, “Ok, I will put it on the calendar for Sunday.”

Now, at the age of 28, I wonder if he has any real recollection of those egg hunts all those years ago. It doesn’t matter. He wants it now, so I will oblige. There is no age limit for egg hunts.

Dad taking a break from "fun" with boys 1993

Sometimes it’s hard for me to see the blessings during any holiday as I am deluged with images of cute, eager faces on typical children enjoying a typical Easter celebration with family and friends.  As I gaze at my own photos of years gone by, though, I realize that all I need to do it look for blessings and I will find them right in my own midst.

When I look at the photos of our, now two adult sons, when they were very young, I realize how very far they’ve come since those difficult toddler years, I am in awe.  I’m in awe of their growth, yes, but also their courage, determination and perseverance.  They have far exceeded any expectations we had in those early years.

When I look at the lovely memories from our trip to France, knowing it’s been a very long time since my love and I have had a vacation alone, I still feel an overwhelming sensation of warmth, happiness and camaraderie.  These photos represent a real emergence into a world of fellowship that we’ve come to need and enjoy.  Back in 1997 there was no Facebook. Now we are able to share and console on a world-wide scale, knowing that we will NEVER be alone—no matter where we are.  That is one blessing among many that I am filled with.

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