April 29, 2014

Summer Writing Project~Coming To Terms with Disability~Beautiful Holland

August 2, 2014

I started this summer with one blogging goal, to take part in a book writing project with Meriah Nikols concerning life affected by disability. But, true to life with disabilities, Addison's needs pushed this project (...and running and anything else that wasn't part of daily survival) to a far back burner. As I told Meriah, so far back it's no longer on the stove. I still feel very passionate about this project and I still need to get back to my writing. It is too good for me to not do it. I don't know if I will get any other segments written but you have to start somewhere. And in this minute this is my somewhere.

Part 2 of the writing series is Coming to terms with disability.  I am republishing this post from April 29, 2014 which explains how I came to terms with his disability.  Love, Kat

I love spring flowers. Actually, I love any flowers. Someone once asked me what my favorite flower was and the only answer I had was it depends what’s in bloom. Gardening is one of my favorite past times. Anyone who has been to our house can see that. When we moved to our home in 2001 none of our gardens existed. Almost all of what you see was dug in my free time with the kids by my side, usually with their own little shovel in hand. My kids love to garden and will tease that mama will build a garden around anything. I adore watching the spring bulbs come up. It is a little glimpse into the hope that the dead of winter will soon pass and there will be something beautiful to look forward to. Every year Allen and I go away for a time just the two of us. However, I love the blooming so much we have to go before the first bulbs, the crocuses, start to come up because I don’t want to miss any of it.

Last April just as the cherry tree blossoms opened and the tulips bloomed, I was admitted to the hospital to monitor and eventually induce Addison. The kids knew I would be sad to miss this and text me photos of the blooming tulips beside our fence. When they came to visit me in the hospital on April 28th, the day Addison would be born, they cut some of the blooms and brought them to me in a jelly glass. Addison arrived at 11:33 pm and everyone now knows a few days later genetic testing confirmed he had down syndrome.
On May 21, 2013 we met the first part of Addison’s therapy team for our initial assessment with Infant and Toddlers. At that time a social worker, Angela, came to our home along with Trudy, Addison’s physical therapist. After we talked a while about how we received Addison’s diagnosis and the impact it had on our life, Angela was eager to share with us a popular story written by Emily Perl Kingsley, writer for Sesame Street and mother to a son with Down Syndrome.

"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 the thing is, I don’t really agree with Emily that raising a child with down syndrome is a pain that will never go away. But I completely agree it is something much different than what we were expecting.

I think her analogy is particularly fitting because those who know me well, will attest I usually end up enjoying where ever I end up.  However, I have never particularly aspired to be any specific place other than where I am.  And although I have a great time checking out new places, when asked about my trips I can surely be heard saying, "It's nice but I wouldn't want to live there."  

Well, except Italy. Being Italian, I have always wanted to explore Italy.  I had the opportunity to visit my sister while her family was stationed in Italy several years ago.  I fell in love with the country. In a heart beat I would move there and never look back.  There were many beautiful landscapes to capture the eye, orchards and vineyards and olive groves no matter where you looked.  The food was amazing.  The people, unforgettable.  Even the sheep were something to behold.  The weather was fabulous.  But the one thing I didn’t see in Italy were blooming flowers.

However, Holland!  What is the first thing a person thinks of when they envision Holland?  The one thing that was missing from Italy.  Fields and fields of tulips.  While I never thought I'd ever visit Holland, I've found out it's a beautiful place to live.
So in those early days as we wondered what Addison’s future would hold I reflected on Mrs. Kingsley’s story.  Motherhood for me is much like Italy.  It is the only place I have ever desired to be.  And yet, I have never wished to be in the Holland of a mother to a child with special needs.  As I considered all these things, I knew one thing for certain, I would never look at a tulip the same way again.

Last fall Addison’s big brothers planted 100 tulips in our flower beds. As we celebrated our boy's 1st birthday on April 28th, those tulips are now in full bloom.  The idea of God’s perfect timing came to the forefront of my mind.

Addison’s due date was a month away when doctor’s felt it was imperative he be induced. Allen and I struggled with this decision for many reasons as we waited it out in the hospital with nurses and doctors constantly monitoring the well being of our boy. On the day he was born in my Bible study I read,

I sought the Lord, and he heard me, and delivered me from all my fears. Psalm 34:4 

Before I closed my Bible, the doctor came in to discuss my test results and told me it was her feeling we must deliver Addison right away.

As I reflect on this a year later, there are many things I know.

1- Addison was not an accident of nature. He was fearfully and wonderfully made by our God who loves Him with a far greater love than even I can begin to imagine.

2- This verse tells me God didn’t put into our hands a great trial but rather through Addison delivered us, and I believe many others yet to be known, from some trial.

3- Even though I have no desire to go anywhere but Italy, God has placed me forever in Holland. Where God puts me is where I want to be. Even in the face of great trial, I have never known greater joy and peace than when I am where the Lord has planted me.

4- God’s timing is perfect and when we seek Him diligently He will reveal not only His perfect will, but also His perfect timing to us. If Addison had been born on May 21st, when he was due, the tulips would have long since been finished blooming. But for the rest of my life tulips will bloom on our son’s birthday and remind me of the beautiful place God has chosen for Addison and for our family.
Those who know about spring bulbs understand one of the amazing things is how they multiply. You don’t really have to do anything to them. They take care of themselves. The bulb will feed off of the leaves for an entire summer. Then they go dormant for the winter. And sometime, when it seems winter will last forever, the bulbs start to peek up from under the snow until the weather turns warm and the flowers bloom. And somehow in all of that, the bulbs manage to split and reproduce so that in a few years your flower bed will be filled with many beautiful bulbs. And that is what life with Addison has been.

Many, O Lord my God, are thy wonderful works which thou hast done, and thy thoughts which are to us-ward: they cannot be reckoned up in order unto thee: if I would declare and speak of them, they are more than can be numbered. Psalm 40:5 

Every.Single. Day.  has been one blessing after another. Even in the times of trial we see God’s hand working and blessings pouring from this little life. The blessings multiply in ways we can not explain. Emma started a journal in which she was writing all the many ways people had shared with us how Addison had touched their life or the blessings they had received from knowing him. We stopped writing in it. Not because the blessings stopped. Indeed, because there were just too many things for us to keep up with writing.

Indeed they are more than can be numbered.

Happy Birthday Addison, you are a blessing greater than any mama could have imagined!!!

5 comments :

  1. This post reminded me of James 1:17 — "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." What a good and perfect gift He has bestowed upon you in Addison! Your contentment and willing spirits are a constant source of inspiration to me.

    ReplyDelete
  2. Happy birthday to Addison! What a blessing it is to know your family!

    ReplyDelete
  3. I'll first confess that I only read the first part of this post (since it's 2am!). I'll catch up on the rest later. I love that Italian proverb! We were all the way across the U.S. for Easter last year - just the four of us. We don't usually make plans for Easter, but rather let things flow as they may. I LoVE your table setting. As always, the pictures are beautiful! But, I have to say that one of my favorite things about this post is the fact that you used REAL dishes at your celebration! My grandma always did that, and I like to as well. Looks like you had a beautiful day just like we did. :)

    ReplyDelete
  4. I just realized that handsome Addison and I share a birthday... now THAT is something pretty awesome. Glad to have something in common with your sweet little man. As the mom of a special needs kiddo, I have read that Holland story more times than I can count, and parts of it certainly do ring true.

    ReplyDelete