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 - Welcome to HollandSofia 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.

Autism4 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.

Grammy Pat & SofiaIf 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?

Patricia

About Patricia

I’m a native Californian, born and raised in Long Beach. I raised 4 great kids and now have 9 grandchildren. I’m experiencing the greatest chapter of my life right now. I’m blessed beyond words, and so grateful for each day.

I’ve been with the O’Connor Family for the past 19 years and have counted it one of my deepest joys and greatest accomplishments. Never did I realize that a passion could become a profession.

I have come to believe that serving others, in whatever capacity, gives me a sense of purpose. It has also given me the opportunity to meet incredible healthcare professionals as well as myriads of selfless volunteers. And out of those relationships have come deep, meaningful friendships.

We all have an opportunity to do good work. My goal is to create trusting relationships. My desire is to know that what I have done matters. I sum this up with a quote by

Norm Henderson . . . “I want to plant trees under whose shade I may not sit”.

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  • Becky

    Pat, what at beautiful, inspirational message. Thank you for sharing your family’s journey.

    • Patricia Kolstad

      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

  • Cathi Hartwell

    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!

    • Patricia Kolstad

      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

    • Patricia Kolstad

      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

  • Carrie Bayer

    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

    • Patricia Kolstad

      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

  • Kori Marie Kolstad

    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

    • Patricia Kolstad

      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

  • Alexander Antonio Echeverria

    Grammy,

    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,

    Alexander

    • Patricia Kolstad

      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!
      Grammy

  • Toni Wagoner

    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.

    • Patricia Kolstad

      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!

      Momma Pat

  • Carrie

    Pat, your sweet Sofia is such an amazing little girl! Your story is one that is filled with so much unconditional love!

    • Patricia Kolstad

      Carrie,
      Our family has gained much since Sofia was born. She has truly changed us is miraculous ways.

      Thank you so much!

      Pat

  • Julie Keller

    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.

    • Patricia Kolstad

      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.

      Lovingly,

      Pat

  • Karilyn Leslie

    Mom,
    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.

    xoxo
    kari

    • Patricia Kolstad

      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!

      Lovingly,

      Momma

  • Hi Pat
    I love your perceptive on life, you have such deep wisdom. I know how much you love your family and how deeply you care for them ALL. Life is one small lesson after another, you have been great at learning the lesson within the lesson, love, compassion & strength can come out of any situation. I am thankful to know you and your family, Sofia has a special place in my heart.