Holla' Holland!

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'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.

For years I have known my plane landed in Holland. For four years Josh has done so well (for Josh) that I have been able to pretend that maybe at some point, someone would tap me on the shoulder and say, "Hey, what are you doing here? You are supposed to be in Italy." and hand me my ticket. Maybe if I worked hard enough while in Holland, maybe if I did everything right, maybe.....

There were even times that, in a Don Quixote moment, I saw windmills and thought they might be the leaning tower of Pisa.

But alas, I have been disillusioned. My son will never speak. I am never leaving Holland. And that is okay. It can be rather beautiful.

Whoo-hoo!!

I have spent the last 2 or 3 weeks convincing myself that I will be fine if I don't get into the OT program at U of U this year. I would give extra attention to Josh and his therapy and I would get a job. Things would be great. Then I got an e-mail....THE email. U of U wants me to interview!!! Now this doesn't mean that I am definitely in but it means I am 1/2 way there.

The interview is an all day event on March 4. I am super excited and kind of freaking out but it is going to be awesome!

Where has all the time gone?

Ah, home from school. Go pee. See Tyler, talk with him, give him a kiss goodbye. Settle down with BioMed, a pen, and index cards. Quick, only 1/2 an hour before Josh gets home!!

Wait! Was that the bus? Go check...nope. Back to taking notes.

I hear a bus! Run! Wrong bus. Back to taking notes.

Crap!! The bus driver is honking at me because they are tired of waiting for me. Run! So excited to see my little boy. Apologize to bus driver.

Inside, ask Josh about his day. Guess what he might have done while he shakes his head yes or no. Wish he could tell me stories about his friends.

Tell Josh he needs to go play so mommy can study a bit more. Study, study, take notes.

(from upstairs) "MAMA!" "You have to come down stairs to talk with Mom." "MAMA!" (clomp, clomp, clomp)

"MAMA!" "How do we talk to Mama?" "mama" "You want me to put on your cape?" (shakes head yes) "-s-s-s-Superman or b-b-b-b-Batman?" "GA!" "S-S-S-S-uperman or B-B-B-B-B-B-atman?" (shakes head yes on Batman) Instruct Josh how to put lips together and make the "B" sound. "Ba!" Put on Batman cape and go back to studying.

Repeat cape fiasco.

And Again.

30 minutes, only 2 pages down.

Lunch.

Clean up lunch and house.

Try to study.

Tell Josh to get out of the kitchen and not play with kitchen utensils. (from front room) CLANK CLANK CLANK! "Bring back the spoons! Get out of the front room, it isn't a playroom!"

(Josh comes in with books and throws them on my BioMed book). Read books. Read more books.

Feel like bad mom, go play with Josh.

Put Josh in my bed for movie time.

Quick! Study like a mad woman!!

Josh comes back up. Whew! Just finished!...BioMed...still have Medical Terminology, Anthropology and/or Theatre.

House is a wreck again, dinner needs to be made. Can't find any spoons to make dinner, decide to clean instead. Find all spoons in front room.

Make dinner, eat, clean up.

Ah...the internet.

Ugh...

So I never really saw myself as a procrastinator but I suppose I must be. I begged to see my academic advisor for over a month before I saw her in December. By that time, Christmas was upon us. She did not strike the fear of not making it in time to me so as Christmas stuff filled my days I didn't worry about figuring out OT school stuff.

Now here it is, I look up the information I need and deadline...January 15....crap. Alright, I have time. I have done my observation hours, I have people who will be my references, I have the grades, all is well...

Except the GRE. I haven't taken it yet! And moreover, it costs 300+ dollars!! And it takes 3-4 weeks for the official results to get to the school!!! AAAAAAHHHHHHHH!!!!

So here I am, I have just paid $45 to apply for U of U, I need to go buy my transcript, not sure how much that is, to send over to them. I will need to pay OTCA $125 to apply for the OT program. And then after all of that I have to pay someone ridiculous amounts of money to take the stupid GRE and even then, they won't get it on time. (Oh yeah, and I haven't bought books for this semester)

I called the OT academic advisor and she said either way it is a gamble but if I take the GRE asap, they might get it (albeit late) and still consider me.

I am freaking out. I have filled most everything out online, I have gotten mostly completed with everything, it is just that test. So I suppose I will take the gamble. I guess I will spend the money and try. I don't want to waste a year. I want to finish this.

*sigh* My brain hurts.

Merry Christmas!

Josh and I have had a fun Winter Break so far. We saw Santa (like 3 times) and his reindeer. We have shopped and wrapped. We have watched the movies and read the books. I am ready for Christmas to come but I will be sad to see it go.

I can't help but to think of last Christmas and my Christmas miracle. I still don't know what the future will hold but I am so thankful for my family and Josh's accomplishments this past year.

So let us remember this Christmas who it was that made lame men walk and blind men see and my Joshy talk. Merry Christmas and God bless us, everyone.

Amen Josh.

This morning I was reminded that my sweet son can say so much even though he can only speak 7 words.

Today I was excited to share a Thanksgiving tradition I have with Josh. Until this year, he has not been interested in the Macey's Thanksgiving Day Parade but I knew this year he would love it. But when I turned on the TV we still had ten minutes to go before it started. Okay, fine, we will watch the Today Show for ten minutes.

As we watched, they cut to one of their reporters in Afganistan. He was there with Marines. I tried to explain, "Those men and women are not with their families today. They are serving our country." Josh stared intently at the screen. Then said reverently, "Home". At first I was confused, why would he say that? "You want them to come home?" He nodded his head without taking his eyes off the screen.

He watched quietly, snuggled against me, eyes glued to the Marines so far from home. Then as the Marines waved to family, he blew kisses over and over.

Happy Thanksgiving everyone. And (even though there are not many in the military who read my blog), a special thank you to all those who serve our country, from me and Josh.

Ungrateful?

I know I am supposed to be grateful this time of year. And I am for the most part. Is it wrong to want MORE? List of things Josh does I am thankful for:

The baclofen is working really well, therefore, we don't have to worry about his legs so much.

He started saying, "Home" last month. That means he now says mama, hot, home, go, boo, ho, ow...I think that is it. (He can't say "Da" anymore since he started saying home)

He can also say "bu" for book and "ma" for more if prompted and sometimes coached.

With coaching he can say the b, m, f, s, and p sounds

If I use the "In 5 minutes..." method, I can get him to do most things.

He knows that 5 is a big number and uses it by holding up his hand all the time.

He is beautiful.

He is sweet.

He wants to be my baby forever.

He can pick up his room now, although some days it takes a lot of fighting to get it done.

He likes to cuddle still.

He always wants to help, even when I don't want him to.

He sings Christmas songs with me in the car since I don't have a radio.

He is an adorable bowler.

There are so many reasons to be happy with him and I am. I just want more.

Maybe it is because his teachers are frustrated with his lack of progress.

Maybe I am jealous of how easily talking comes to other children. Maybe I am scared that by

going to school I am not being the mother I should be to him. I know all of these play a part in

the way I am feeling right now. But two things have happened recently to make me have that

ache for more.

I was telling Tyler what the teachers said about Josh and saying how worried I was about him and Tyler said, "Have you ever considered that Josh WON'T talk? Or that he won't talk in sentences like other people?" Of course I have considered this. I have tried to accept that possibility since he was 3 weeks old. But we have worked so hard. We have fought for his words. Having a reminder that no matter how hard we work it may not make a difference was hard to hear but it is true.

Then today I was talking to his speech therapist about how he lost "Da" in exchange for "home". She said something like, we will keep trying for it but he may never get it back. I have never had one of his doctors or therapists say something like that, at least not for years. It has been, we are so pleased, he is doing better than we could have ever expected, I think with hard work this kiddo will keep surprising us. So to hear someone say they didn't know if he could get back something as important as "da", that is rough.

And don't get me started on potty training.

*sigh* I know I shouldn't but I want more.