Wednesday, August 19, 2009

Looks Like I'm going to Holland

I guess denial might be where I've been?? I'm not sure. But I'm now officially worried about my little one.

We have been diagnosed with a "Profound Expressive Language Delay" perhaps connected with a suspected central motor problem.

We went to a developmental specialist about a week ago, and received her evaluation in the mail a few days later. There's something about seeing a "problem" in black and white that makes it real. We are being referred to a neurologist.

Laila is at or above normal intelligence, and perhaps I always just thought she was laid back and happy, which she is. But I am finally realizing there is something going on, we're just not sure what. It looks like I'm going to have to brush up on an old skill even more (sign language). It's really weird to try and teach her to communicate with us, knowing she understands exactly what we're saying.

My sister shared the following essay with me, she has a child with special needs, too.

Emily 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.


Emily said...

That was beautiful, Lucy. My prayers are with you as you take on this new path in life.

Sarah said...

Oh oh oh. That's hard. Just know after the shock wears off, it's not as bad. Acceptance was the hardest part for me. Once I was able to deal with it, I could use my new knowledge to research and learn how to deal with Dale's problems. Good luck! We'll be praying for you.

becca said...

xoxo sis!

Jamie said...

Such a beautiful post! Laila is a beautiful and talented little girl. You're so lucky to have her! Best wishes and prayers for dealing with any challenges that come with such a lovely little beauty.

Jenny said...

Your Holland will be beautiful and fulfilling! With your attitude and talents, anything is possible!

The Galan Family said...

What a beautiful essay and what a special blessing you have to be entrusted with Laila. She and You are going to be just fine.

Maren said...

Lucy, while I am sorry you have to go to Holland, I feel that little Laila is in the most capable hands...her parent's.

Des said...

Think of the love she has and will bring to your family. "Acceptance" is a very sad yet tender time. Once you make it through...look out world. You are an amazing mom and I can't wait to see what you do with this assignment! I'm here if you need me. Love ya!

Debbie said...

I love the Holland story. It's good that you now know and can work on learning her language and teaching her your's, albeit a bit differently.
We all have a learning path, some just looking different than most.
I'm praying that the Lord leads you to Miss Laila's with ease.

Brandee said...

I love Laila and I love Lucy!! We are thinking about you guys lots and we'll be sure to keep you in our prayers. I'll call you!

Chapman Family said...

If anyone can handle this, you can. And how cool to know that there IS a reason that you learned sign language. You have already been able to help others out with this talent, and now you get to help out sweet Laila. What a blessing to already have a step forward.

Shilae said...

What an insightful and powerful essay! Laila is beautiful.

The Lough Family said...

Love the story. If you get a chance, you should contact Amanda. She could help you with any questions you may have (she's a speech/language pathologist).

Gwenda said...

Love the "Welcome to Holland" story! Laila is so darn CUTE!!

Jen said...

I love that essay. I will be passing it on to many others who have special needs children. You're fantastic and like it has been said a lot on here, Laila is in wonderfully, capable hands.

Lori said...

This is a long one Lucy.

Now that the tears have stopped flowing, I can comment. Two years ago Lonnie & I decided to be foster parents. When doing so, foster parents need to notate if they have any certain requests such as age, race, disabilities etc. Admittedly, we were looking for younger children, race was irrelevant, but we said that we did NOT want children with special needs because we did not feel qualified in the least to care for them. Shortly thereafter, two little people (ages 4 & 5) came to live with us. No one knew the extent of their disabilities (or didn't tell us). Just within the last year we have learned that Kirsten is one point away from mentally retarded and is neurologically impaired (which is different from MR). We learned just two weeks ago that Aaron who barely spoke a few words just two years ago but is trying and speaking so much more now, has apraxia which is also a neurological disorder. It may take years for him to ever speak normally and fluently. We thought he was just slow but there is more to it than that.

Our other children are above average in intelligence and this was so foreign to us. To say it has been taxing, frustrating,and exhausting, would be an understatement. To say we have not wanted to quit would be a lie. To say we are scared of the future since adoption is imminent for us, is an understatement. We have been in "Holland" for the last two years. For some time we kicked and screamed and said, "We cannot speak this language".

The beautiful part for you Lucy is that you loved Laila before you ever saw her, met her, or touched her. You loved her all this time and then you realized she had special needs. This has been the hardest part for us. There was no love first. There was just one hard unexplainable, frustrating moment after another where we prayed we could get through the day. We had to learn and are still learning how to love the differences.

We definitley never got on a plane to Holland but definitley landed there. Wtih all of the children's issues we recently contemplated whether adoption was something we really could do. Then the other day the most beautiful thing happened. We were reading a library book about a little girl adopted from China and were discussing last names. Kirsten proudly said, "I want you to adopt me". I explained it clearly as we read the book, but I am never quite sure what she understands or even grasps. But as she squeezed my arm tightly and snuggled up to me and whispered those words, I had to choke back the tears. Then we tried out the new names. "What do you think Kirsten Groft sounds like?" She said her "new name" and smiled proudly. I looked at Aaron who seemed to be paying very little attention and he sweetly said, "Aaron Grrrruff" with all the sweetness he could muster. I could barely contain myself. He's been practicing the name ever since.

Much of our family and some of our friends, think we are nuts to take on these children. Very, very recently, I finally came to the conclusion that you just don't throw people away because they are not perfect. To be honest, Laila, Kirsten, and Aaron, are probably more perfect than the rest of us. I'm here if you need me Lucy.

Watashi no Uchi said...

Love you guys! Let me know if there's anything we can do! (even if you just need to vent or something) Good luck with everything and keep us up to date! We SO wish we lived closer to you guys! You're in our prayers and thoughts constantly! Give her big hug from Andy! By the way, I LOVED that essay! It totally applies to everything in our lives and being grateful for what we have. Hey, maybe we'll learn the sign language too so that when she comes out here to visit, she can talk to us as well! Love you guys!

NaN said...

I'm glad you attributed the essay to Ms Kingsley; I 'met' her many years ago on a widow's message board. She also was a writer for Sesame Street. Her only child Jason also acted. As for your daughter, you can be a great advocate for her. I work with MC adults, many who have little or no family support at all. Good luck!

Susan Coish said...

Oh my! I remember the first time I heard that essay I cried and cried. It was during a class in Nursing school, we had a guest speaker come in to speak to us about what it was like to adjust to life with a child with a special need. Personally, I think Holland is going to be a beautiful place for you!! May God give you the strength to get used to your new surroundings!!