Journey Mercies . . . Welcome to Holland
She arrived with the usual fanfare, a normal, easy delivery . . . mom and dad crying tears of joy, Aunt Kari on hand, and me taking photos as fast as my camera would let me. She came home from the hospital waiting for a name. Mom and Dad wanted to make sure that they chose the perfect one. On the fifth day we learned what we would call her . . . Sofia Miyoko , Wise Beautiful Child.
Sofia had a smile that would light up the room. As the months passed, Sofia progressed up to the point of rolling over and then, the progression stopped. Soon mom & dad knew that questions needed to be answered and so their journey began.
The battery of testing (MRI & CT scans, hearing and genetic testing, as well as ultrasounds) over the next year or so did not reveal much in the way of answers. It was exhausting. We learned that thankfully her hearing was fine, but it begged the question; if she can hear, why can’t she speak?
The answer finally came after 2 long years of fighting to understand: Autism
In watching my Sweet Sofia for nearly 6 years I have found a deeper sense of myself. I now have a profound sense of understanding and gratitude for those families whose lives have been touched by these children we call “special”. As her “grammy”, we have a bond that is so very special. When I visit on the weekend, she squeals as she runs to give me “arms” – which translated means a BIG HUG around my neck. Without a spoken word she declares her love for me moment by moment. Autism does not define Sofia – it truly gives her another dimension that most of us never see in anyone. It’s called unconditional love. No matter how angry she may become over the smallest of incidents, in the twinkling of an eye, she turns toward me, lets me give her a tight squeeze, and her love comes right back.
4 and ½ years after Sofia’s first developmental test, her parents are still continuing to wade through the maze of doctors, specialists, social workers, therapists and the like. It has been a journey of enormous proportions, one that will last a lifetime. It has taken great strength of heart, wisdom, patience, and perseverance to make sure that Sofia gets all the services she needs.
I have learned and gained the incredible capacity to see beyond my own healthy children and grandchildren to a place where more families than I could have ever imagined, dwell. The place between normal and abnormal, between strong and frail, between functioning and non-functioning, between looked at in love and looked at in pity.
If you’re familiar with this story or the feeling of arriving at a destination different than the one you had planned out, I want to invite you to click this link and read the charming story by Emily Perl Kingsley that reminds us of the beauties that exist even outside of our planned destination.
This blog is dedicated to my sweet, very lovely granddaughter, Sofia Miyoko Islas, her mother, Kristen Elizabeth, her daddy, Jeffrey, and her sisters, Daniella, Madison and Gabriella. For without them, I would not have experienced the very deep and abiding love that I have for Sofia and all families whose lives changed when they landed in Holland.
• Share with me your thoughts and/or experiences of loving, meeting or supporting these children and their families.