I want to share with you several things that gave me great comfort and help at what was a very difficult time in my life. Probably the most difficult time.
First, here is Emily Perl Kingsley’s fabulous essay “Welcome to Holland.” I don’t recall the first time I came across this, but I do remember that when I read it, it rang true and I very much appreciated and could identify with the emotions she shared. When she mentions the pain that will “never, ever, ever, ever go away”, I always get choked up.
“Welcome to Holland” by Emily Perl Kingsley
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 is like this . . .
When you’re going to have a baby, it’s like planning a fabulous trip–to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s 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 sent 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 awhile 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 significant loss.
But . . . if you spend the rest of 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.
This next little poem meant a lot to me when I came across it as well. I also don’t recall where I first saw it, but ever since I found it, I’ve kept a copy in my journal and when Alex was little, I read it frequently.
“My Broken Doll” by Ted Farrell
A broken doll was sent to me,
From heaven up above.
A broken doll to have and hold,
A broken doll to love.
My joy was turned to sadness.
My life I thought was done.
I’d hope the doll I would receive
Would be a perfect one.
It’s srange how that which seemed so sad
Should be a joy and fun.
I thank God for this priceless gift.
My broken doll, my son.
I read this next poem in a religious magazine called The Ensign. Although not specifically about being the parent or sibling of an autistic child, I believe that many feelings about adversity are universal and I just love her unexpected final line.
“A Lesson in Adversity” by Lisa South
Traveling by bus,
those around me slumbered,
yet sleep eluded me.
I thought how fortunate
my companions were,
oblivious to the aches and pains.
They missed the tedious hours.
They missed the pouring rain.
I envied them so–
until they missed the rainbow.
When my son was first diagnosed, I had no clue as to what was going to happen, how this would affect my life, my family, or anything. I questioned how I would even get through this experience. Many people, no doubt, are familiar with the hymn “How Firm a Foundation”, especially the first and second verses. However, it was verses 3 and 4 that made a huge difference in my life. I careful printed the words onto index cards and taped them to the wall above my kitchen sink. As I would wash the dishes every day, I’d focus on the message in these lines and I came to feel that God WAS helping me, strengthening me to bear what I had to bear.
Verse 3. Fear not, I am with thee; oh, be not dismayed,
For I am thy God and will still give thee aid.
I’ll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, upheld by my righteous,
Upheld by my righteous, omnipotent hand.
Verse 4. When through the deep waters I call thee to go,
The rivers of sorrow shall not thee o’erflow,
For I will be with thee, thy troubles to bless,
And sanctify to thee, and sanctify to thee,
And sanctify to thee thy deepest distress.
This last item I want to share is one paragraph from an address entitled “The Moving of the Water”, by a leader in the LDS church, Boyd K. Packer. By an uncanny coincidence (or not!), this address was delivered April 11, 1991, just three days after Alex’s initial diagnosis. I read these lines over and over, every time I needed a little boost. I gave each of my children a copy. I treasure these thoughts.
“You parents and you families whose lives must be reordered because of a handicapped one, whose resources and time must be devoted to them, are special heroes. You are manifesting the works of God with every thought, with every gesture of tenderness and care you extend to the handicapped loved one. Never mind the tears nor the hours of regret and discouragement; never mind the times when you feel you cannot stand another day of what is required. You are living the principles of the gospel of Jesus Christ in exceptional purity. And you perfect yourselves in the process.”
I truly hope the words I have shared here might bring a measure of comfort and peace into your life.