Recently certain things have happened to our little family that has awakened specific memories. I feel the urge to write some of what we have felt so far along our journey as a family. When we first discovered while we were still expecting Michelle that our beautiful little princess that we had dreamed about for so long would have so many challenges and obstacles in her life, it was crushing. The depression and despair I felt was devastating. However, we have many wonderful friends and family that came and stood by us to give us the support and strength we needed. One wonderful friend of mine gave me a copy of this well known and also inspirational poem.
WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
So Tory and I changed our thinking. We started planning for “Holland.” We knew that what we had once dreamed for our little girl could never be. But we wanted to be able to give her all that we could. So we studied and prepared diligently for “Holland.” However, our flight to our destination was not smooth or gentle. It was very rough. The turbulence at the very end was incredibly overwhelming. We truly feared we might not make it to the end at all.
The day Michelle was born was truly terrifying; it was not an experience that we can look back on as a beautiful, miraculous, quiet moment. But one of fear, anxiety, and ultimately loss of our dream. It was as if we had anticipated and prepared for Holland, and all of sudden we had to make an emergency landing and were left in a desolate wasteland. It was dark, cold, and lonesome. I remember thinking, I had dreamed of Italy, then realizing that would never be, I had planned for Holland, why was it that we seemed to have come to be in Siberia at the beginning of winter during an historically bitter winter storm. And that was exactly what it seemed to be. It was dark, cold, and constantly stormy. We never had time to think ahead, we lived in constant survival of each new storm. We would rarely get small glimpses of our surroundings when the storms would clear; all we saw made us feel more and more isolated.
The months that followed her birth were stressful. We were constantly bombarded with tests and procedures, consents to sign and surgeries to endure. Day in and Day out we sat by her bed and held her little hand, as much of the time that was all we were allowed to touch. But we would not give up.
One day the storm became more intense than we had yet faced. We were certain that this was beyond what we could endure and were ready to stop fighting. We were ready for the pain to end for our entire family. The cold, the dark, the isolation had become too much.
We were put in a situation hundreds of miles from home, family, and what we thought was our entire support system where we had to decide whether we would keep fighting for our daughter. Whether we would consent to one last surgery, without which she would die. We stood there hand in hand talking with the Head Pediatric Cardiac Surgeon, having talked alone beforehand and as parents we had decided our daughter had fought harder than was necessary and were willing to let her return to our Father in Heaven, when our Heavenly Father made it clear for us it was not our decision to make. We signed the consent for surgery and with that signature the storms began to clear and warmth of the light of the Son, warmed us to our very center.
The storms did clear. And we still do not quite know where our plane “crash landed,” but we do know this, it is beautiful beyond all description. There is nothing in the world that can describe or would have prepared us for the Joy and Magnificence we experience. Another thing we have learned is that the Pilot never left us. He has stays with us through the entire experience, providing for all our physical, emotional, and spiritual needs. We are never alone or isolated, we are sheltered and cared for and would never have survived without His care. He gave us our wonderful parents and siblings who sat silently holding us as we held Michelle. We had friends who have miraculous come into our lives who loved us through it all. We have the worldwide faith in something or Someone Greater that found us and cared for us. We now know that it is through this Faith that all things are possible.
We may not be able to enjoy the Michelangelo David, or even the Windmills or Tulips, but we still see beauty all around us. In fact we are incredibly thankful for the opportunity to experience this unique journey and the chance to explore this unknown place. Even though we still face storms and know that more storms may and will come our way, we work to keep our focus on the beauty.
