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.
A place that isn’t Italy, but beautiful, wonderful Holland.
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.
This was a very beautiful and inspirational story about my precious cousin Sofia Miyoko. I think I speak for everyone that has read this heart warming story that you are what a true Grandmother (Grammy) is all about, unconditional love for their family. You are truly the a woman filled with wisdom and love. I appreciate everything that you have done for my family and my little cousins. I love you as big as the world.
Love your handsome and adoring grandson,
My sweet Alex:
Thank you so much for your comments and the depth of your caring for our little Sofia. I believe that each of us can use her life as a model of how to truly love unconditionally. She has made me a much better woman, and one that can be filled with empathy and respect for those who live each day with a disability. You are a wonderful young man, and one that I am very proud of. Continue to be selfless and you will enjoy your life to the fullest.
I love you big as the world!
Thank you so much for sharing. You are an incredible writer especially when its about someone or something so dear to you’re heart. I have been blessed by the presence of Sofia and she is an astonishing little girl.. and the love she receives from you all is amazing!!! You’re family is in a category of It’s own. You’re very unique and special to me, to Sofia, and to so many others. Thanks again for brightening my life and sharing your family.
My sweet Toni:
If anyone has the capacity to love, it is you. Your journey has been one of great heartache and unbelievable joy. You have walked the hidden path and come out into the light. Thank you so much for your sweet expressions. I love it when I have the chance to see you and your beautiful kids. You are truly and inspiration to others, and definitely to me.
I know that every time someone meets Sofia, they come away with a better understanding of what it means to be locked inside yourself, not able to express every feeling. Her ability to light up a room with her smile changes everything. And, the meltdowns become a learning experience, as we all have an opportunity to walk along side of her.
You are a blessings to me and to your friends. Thank You!
Pat, your sweet Sofia is such an amazing little girl! Your story is one that is filled with so much unconditional love!
Our family has gained much since Sofia was born. She has truly changed us is miraculous ways.
Thank you so much!
My husband and I landed in “Holland” nearly 15 years ago with the birth of our 3rd child who was diagnosed with Trisomy 21, commonly known as Down Syndrome. We now know that the diagnosis wasn’t fully accurate. Our daughter may have Down Syndrome in her medical record, but in her life she definitely lives with “Up Syndrome.” We are enjoying the journey.
Dear Julie . .
Your words touched my heart . . . and I believe that those of us who love and care for our “gifted” children understand fully the depth of their being. Your use of the word “Up” has put a smile on my face and joy deep within. You, like many families, were blessed with a child so divine that we can scarcely describe their impact on our families, our communities, and beyond. I know that you have opened wide the hearts and minds of those you are close to. Thank you for sharing your love and your sweet daughter.
As I look at the photos you’ve posted of our sweet Sofia, the love I feel for this “baby” is immeasurable. From the minute she took her first breath to this day, she has grown in beauty and love. Our sweet Sofia can’t tell us how she feels about us, but her eyes and her arms and her nods and her smiles say 100,000 x’s more then she could ever express with mere words. She is truly a blessing from heaven, and has touched us all in a way that we would never have expected. Her struggles have become our struggles, her laughter and smiles our joy!! She was born into the right family, for she will have us behind her every step of the way. She will never want for anything, because our sweet Sofia has us ALL in the palm of her little hand.
Kari . .
Aren’t we blessed? We have learned so much from Kristen and Sofia. A deeper love than I could have imagined, patience, understanding, the true meaning of “special”. I’m so thankful that our family surrounds Sofia with this kind of love and support. Even the older boys have this deep abiding love and sense of protection when Sofia is near.
Thank you for your sweet post. What a journey we are on . . . Holland is a beautiful place to be!