Journey Mercies . . . Welcome to Holland
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.
• Share with me your thoughts and/or experiences of loving, meeting or supporting these children and their families.
• Perhaps you are living in “Holland”? What has it been like?
21 Comments
Pat, what at beautiful, inspirational message. Thank you for sharing your family’s journey.
Thank you, Becky . .
This has been one of the most important journey’s of my life and the lives of our family. Each and everyone of us . . down to her 4 year old little sister, has begun to understand, support, encourage, and applaud all of the trials and celebrations in our little Sofia’s life. She really has made a significant impact on us.
Pat
Thank you Pat for sharing! You are my inspiration and the “quiet angel” I can alway rely on to touch my heart…my Holland is the here and now of caregiving for a mom that has deteriorated in front of my eyes the past two months after breaking her hip. I never planned on visiting Holland and am not really sure I like it here, but I will take this visit and try and make sense of it. And more importantly I will try and cherish the scenery!
Cathy . . .
Thank you so much for your sweet comments and your story of caring for your mom. You, my friend, are her Angel. Loving, supporting, caring and sheltering her on her journey. And, it now has become your journey, as well. What we do, as children, is to try to give them what they cannot supply on their own. I want you to know that if you need help with anything, please contact me. I hope you know that I am here as a friend for you, with many outside resources which might help with the care of your mom.
I am on a similar journey, now planning to care for my brother. It’s certainly not what we signed up for . . . but the blessing of love that we can supply will help us through the hard times and reveal that not all of us have Italy on our agenda. We might have been there once, but there’s still something very special about Holland. Look it in the eye and realize the gift you are to your mom!
Lovingly,
Pat
Auntie Pat,
I love all your stories about Sofia and the incredible journey she has exposed your family to. It’s so apparent that she is a gift to you and not a burden. A beautiful joy and inspiration. It opens my heart and all the others who hear you share about her to children with this diagnosis.
While I know this journey has not been easy, nor always joyful, you and your family are excellent at extracting the joy from any situation.
I love all of you and am so grateful for this story that you’ve told because of and for Sofia.
Love, Molly
Molly:
Thank you for commenting on this very special blog. It means so much to have “family we choose for ourselves” reveal their thoughts about someone they know. Sofia is our greatest joy, because each day with her there is different, special, unknowing and a gift. She lightens our hearts and strengthens our resolve to make good choices on her behalf. To know that one so innocent depends on so many for her daily needs, puts me in a whole different realm of love. She is my golden ticket to Holland!
Love you dearly,
AP
Pat, thank you so much for sharing your sweet Sofia with us. I remember meeting her a couple of years ago. She took to me right away, giving me “arms” & letting me hold her. Such a lovely little girl! I have friends who are also on this journey with their children & grandchildren. Thank you so much! Carrie
My sweet Carrie . .
Thank you so much for remembering that moment. I do believe she touches people in a way that causes remembering. Outside of her behavioral meltdowns, she loves being with people and loves her hugs. I’m sure that you are aware of your friends struggles, joys and heartaches. I know you are a person who would support friends on their journey, offering help when needed or just a call to say “I’m thinking about you, how’s your day going.”. There is a new commercial on network TV from an Insurance Company who advertises how they can help families who children are “special needs” plan for their future. As much as I hate exploitation, I do realize that family’s need to think about their “forever children” and how their child will manage life when they are are no longer around. It is something that my daughter thinks about a lot.
Thank you for your comments . . . you are an angel to many!
Lovingly,
Pat
Mom,
One of the highlights of my life was the day that I first met our precious Sofia for the first time. I was not there for her birth, or for the few years that followed. However, this darling one has opened her “arms” to me, her KoKo, from the first moments. Learning along with the rest of our family about Autism has been such an eye opener for me. Watching her progress and communicate has been a gift. The unconditional love of this little girl is so precious to me. I will never forget the moment that Sofia, of her own free will, climbed up into my lap and layed back against me, claiming me as her KoKo…and I am positive that that is what she wanted to convey. “I love you Koko…you may not have been here to hold me when I was little enough to fit in your arms….but you are here now.” And just like her Momma, I am able to make this girl laugh…that’s my joy. She is a gift and oh so loved. Thank you Mom for writing such a beautiful piece about our girl. To Kristen and Jeff, You are champions for your Sofia Miyoko. I respect and admire you both so much.
Love, Kori Marie aka KoKo
KoKo . . .
She IS a beautiful miracle to our family. I believe she has done more to bring about unity than anything. We are bound by love, and have become better people because of Sofia. Thank you so much for your response and the picture you have painted. I hope that others who read this story will respond in like when they come across a child who is unruly or having a complete meltdown. We never know what that mom or dad maybe struggling with. All we can do is understand and not look at them with disdain.
Lovingly,
Momma