Welcome to Holland.

I just found this essay online and wanted to share it with you.

Welcome To Holland by Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with 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."

How perfect is that?! You know, I've been to Italy. And it is beautiful, breathtaking and wonderful. I'd love to visit again someday, if you get my drift....but for now, I'm really happy being in Holland. :)

Happy Halloween!

Last week, we had an appointment with a developmental pediatrician. It was a good meeting and we really liked the doctors Joshua saw. They'll continue to follow him, along with his regular pediatrician, for as long as he needs them. We knew from research and from what other doctors have told us that Joshua would likely have some sort of permanent disability, and hearing the doctors give a concrete diagnosis was both a relief and really hard. The doctor told us that after Joshua is a year old he will most likely be diagnosed with spastic quadriplegic cerebral palsy. They don't diagnose until after a year because of the incredible amount of growth and changes in the muscles in the first year. Spastic cerebral palsy is the most common type of cerebral palsy, accounting for nearly 80 percent of all cerebral palsy cases. Children with this type of cerebral palsy have one or more tight muscle groups which limit movement. In Josh's case, all four limb/muscle groups are involved, hence the 'quadriplegic' classification. Children with spastic cerebral palsy have stiff and jerky movements and they often have a hard time moving from one position to another. They may also have a hard time holding and letting go of objects.

A good friend asked me how the diagnosis affected me, how I was dealing with it. My answer was that I have good days and bad days. Truthfully, the thing that I have the hardest time with is not the diagnosis or knowing that my son will have a physical disability. The thing I have the hardest time dealing with is my fear for Joshua. I'm afraid that he will be made fun of and be called names. I'm afraid he won't be able to run around the yard or ride a bike or go rock climbing with his dad. I'm afraid he won't find a woman who will look past his disability and fall in love with him. I'm afraid that he will only see his disability and lose sight of how wonderful and perfect and valuable he is.

But regardless of my fears for him, I will never stop believing in Joshua and all that he is going to accomplish as he grows up and walks through this world. I believe with all my heart that he will serve as an incredible witness in his lifetime and that God will be glorified through his actions. Both Ben and I will support him in everything he does and tries and we will help him accomplish all of his goals any way we can. And it could be so, so much worse. He could have been diagnosed with a terminal illness. Cerebral palsy won't kill him, it will only slow him down a little bit.

Ok. I'm going to end on a high note. Joshua has teeth! Well, he has a tooth but the second one isn't far behind. :) See?

It was one year ago today we found out that we were having a little boy. I remember so clearly the shock and awe and excitement that came with that ultrasound. Now, every day is filled with awe and excitement (and sometimes shock too! A diaper after a meal of sweet potatoes is a sight to behold!) as we watch Joshua grow. Just look at the difference a year makes!!

October 31, 2007: October 31, 2008: Hahaha! I bought this costume last October when it was on super-de-duper clearance. I just knew our baby was going to be cute enough to pull it off! Happy Halloween everyone! :)

ps...

Josh had a doctor's appointment on Friday. He got a flu shot (didn't even flinch!) and we found out that he is 16 lbs, 10 oz and 26 inches long. His head is still 3rd percentile.

Oh...and he's cutting his two bottom teeth. Cutting as in you can feel them! My little boy has teeth!

A Bunch of Updates

Ok, ok, ok Auntie Jodi & honorary Auntie Diana...keep your pants on. Here's some pictures and an update.

First, a few non-Joshua things to update you on. We're still waiting for our mortgage committment letter from the lender. Once we get the letter, we'll be able to set our closing date. Once we have that date, I'll let you know. I was going to wait until we closed to post a picture of the house, but I just can't stand not showing it off! It's small and sweet and will be a wonderful place to raise our little bug.

The only picture I have of the inside is one of the kitchen. Aside from the bathroom, it's the only other room that isn't four blank walls and a floor. And the bathroom...well, that will be a whole post in and of itself. I'll simply tell you that there is tile. Lots of black & yellow tile. The floor kind of makes you a little dizzy. :) So here's my TINY kitchen. To the right of the stove is the dining area & to the left is the garage. One of the first things we'll be doing is painting the cabinets!

Next order of business...Ben's third trip to Casa Vin'Arte to see his baby. This visit took all of 10 minutes and consisted of transferring the wine from one big glass carboy to another. Next visit is filtering, and then we get to bottle it and bring it home!
Ok, that's all the non-Joshua updates. Here's what you really visit this site for. :) My youngest sister, Gina, surprised mom by coming for a visit. :) I deserve a gold medal (or at least a few cookies!) for keeping that secret for so long! It was her first chance to meet Joshua (she's pregnant and didnt' want to risk coming sooner in case she caught CMV from Joshua) and they both seemed pretty taken with one another. I'm so glad you came, G! Joshua misses you. :)

Joshua & Auntie Gina from Jamie Nodine on Vimeo.

While Gina was here, we had a baby shower for her and Jodi came up to spend some time as well. Gina got lots of wonderful things for her baby, including this wonderful hand knit hat from her friend, KT. I asked KT to make one for Joshua, so hopefully I'll get that soon and put up pictures. It was such a beautiful weekend here, we decided to go apple picking and enjoy being outside. Joshua, as usual, loved it.

Josh's therapy continues to go well, he is getting stronger and more able to do things each week. He is reaching for things and trying to touch everything! YAY! He's gotten really good with his left hand. He's obesessed with putting it in mouths. :) If you have a mouth, he has a hand to go in it. Jumping is still his favorite activity, followed closely by standing and taking steps (while completely supported of course!).The other thing he's obsessed with is lights. Light fixtures, light bulbs, anything that shines. Sometimes he'll stop mid jump to look at the light fixture in the dining room! Ben thinks he's going to be an electrician. Aunt Jodi says he may be the next Louis Comfort Tiffany! Whatever he will be, I love watching him develop into it. :)

When Cousins Attack!

This series of photos makes me laugh every time I see them. Notice how innocent Timothy looks. But we all know that looks can be deceiving. Here they are posing for a picture with grandpa - Sitting there all nice and then BAM! Just look at how my nephew attacks my son! :) Poor Joshua is defenseless (and apparently surprised) by Timothy's attempt to remove his shirt!HAHAHAHA! Ok, so maybe I rearranged the photos a little to frame poor Timmy. In reality, Timothy is so , so gentle with Josh. Every time they get together, Timothy strokes Josh's arm or his face. He's such a sweet little boy. Sorry I framed you, Timmy! Auntie Jamie loves you. :)

After grandpa was done with the boys, Josh got in some snuggle time with his great-grandpa while Timothy cruised around the house. That little boy can really move!

Joshua's therapy continues to go well. I am so impressed with how fast he's learning and changing. He's recently started reaching with both hands and putting things in his mouth. He tries really hard to get the pacifier in his mouth and I have no doubt that in a few weeks he'll have it down. He still loves to stand & jump and will even take a few steps if you lead him!

A typical therapy session with Joshua's OT, Rochelle, usually starts off with some stretching and moves into play. We work on sitting and his core strength, work on reaching and grasping, work on laying on his tummy and even crawling! Last week, Joshua "crawled" across the living room. It wasn't a true crawl, but he was doing reciprocating leg movements which was awesome! He sort of pushed himself across the carpet with his legs, but his arms were still down & his cheek was on the carpet. :) Funny image, huh?

The introduction of food continues to go well with one little hitch. In the past week, Joshua has only had two dirty diapers (and they've both made me gag/nearly throw up!). I'm calling this little hitch Poopwatch '08. :) I've tried giving him straight apples, straight pears, pear juice, apple juice...all the things that are supposed to make babies go. So we decided to try sitting in a warm bath. While it didn't make Joshua poop, he did enjoy the experience.

Rebecca, I know how you love the rolls, so this picture is just for you:

Even with the lack of poop in his life, Joshua continues to be a very happy boy. He loves being outside in this crisp fall weather and continues to be the light of our lives. :)

Does anyone else think that my son resembles Mater, from "Cars"? It's the first thing I thought when I took this picture! Even if he does look like a rusty old tow truck from time to time, he's still my little stud muffin and the cutest baby on the planet!!

Never Say Never!

God has a funny sense of humor. He always gives us what we need. And what He gives us is always, always, always better than what we could have imagined. Let me give you a few examples...

When I was 16, I wanted a car. But I had requirements for my car. It couldn't be white, couldn't be a 2-door, couldn't be standard. I would never drive a standard white 2-door! I mean, there are so many cars for sale out there, I was sure I could find something to meet my needs...as long as it wasn't white, wasn't a 2-door, wasn't standard. Fast forward a few months and what was I driving down the road in? A 1988 Nissan Sentra. To be more specific, it was a standard, white, 2-door Nissan Sentra. And I loved it.

When I thought about the children that I would have someday, I pictured them with dark hair, big eyes & bright smiles. But I also had requirements for my children. I didn't want a child who was either mentally or physically disabled. I mean, I just couldn't handle that! I worked in a special ed. classroom right out of college and that was so very frustrating for me. And I was afraid that I would pity my child if they were somehow handicapped. So I'd just take a healthy, perfectly normal child, thank you very much. Fast forward a few years and who is the light of my life? A little boy with dark hair, big eyes & a smile that is brighter than the sun. To be more specific, he is a little boy with dark hair, big eyes, a smile brighter than the sun with a great possibility of a permanent physical or mental disability. And I wouldn't change a thing about him.

When Ben and I discussed the type of home we wanted to buy someday, we pictured homes that we could raise a family in. But we had requirements for our home. Sometimes some requirements conflicted with other requirements! Ben didn't want to be in the center of town, but I didn't want to be too far away from things. Ben wanted a large plot of land but neither of us wanted to do lots of yard work. We wanted an older home with character that we could fix up and make ours, but we didn't want to have to fix it up before we moved in and then spend all our time & money fixing things. I couldn't even consider a house without a dishwasher, garbage disposal and lots of counter space. We didn't want a little tiny house. We both said we never wanted a ranch style home. We wanted a two car (or more!) garage. We didn't want less than three bedrooms. We were starting to think we'd never own a home (but if you take a quick look at the title of this post, you'll see that we're learning never to say never!!). Fast forward to Saturday, October 4, and what did we do? We put an offer in on a 1,025 square foot, two bedroom, one bath ranch with a 1 car garage and an outdated kitchen with no dishwasher, no garbage disposal and very little counter space. Two hours after putting the offer in, it was accepted!! And we're thrilled. I'll give you more details when we get further into the closing process and have more to tell. :)