Saturday, March 24, 2007

Welcome to Holland!

Proverbs 16:9

In his heart a man plans his course, but the LORD determines his steps.

I found this great, and inspirational story, thru LPA by Emily Pearl Kingsley (1987) that I want to share with you. She wrote on her unique experience of what it feels like to be dealt a different hand than you expected with regards to having children. I hope you find the same meaning in it I did...it was/is very moving to me. I have included my thoughts on my "own personal trip" at the end of her candid story. I truly hope you understand the comparison and genuine tone that I purposed to convey. Enjoy!

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. ---The end.


I truly get what this loving mother was trying to say...except I have a slighty different trip planning experience. And I would like to tell you about how I ended up, also in Holland.

As you know, I was planning for our 3rd dream trip to Italy and was about halfwaythru my waiting game for the fabulous vacation to embark...when we rec'vd news that my passport was on hold-and I would need to wait and be patient-no one was sure if it would come thru, and the trip may not happen at all. I worried that this third trip to Italy may not happen, even with all the careful planning, prayer, patience, etc.

But as weeks went by, things started to look up (though there were many ups and downs while waiting). Eventually, I got cleared to go to Italy-but we all had to go immediately to board the plane. Yes, it was a bit earlier than I had planned to go and this time of year in Italy wasn't as I'd hoped for in 8 weeks, but-I felt blessed to be going again-even early. I was finally in route to Italy, when the captian announced "We are experiencing some problems, we are going to be making an emergency landing, our engines have gone out, we're losing altitude, brace yourselves-we may not make it to Italy-or at all-we may land in Holland, we just aren't sure yet".

So in a flash, I thought thru what Italy would've been like again, and prayed that not only would we be spared and land safely, but selfishly that our plans to Italy could somehow continue.

It is such a wonderful place and I'd known of no other experiences like my previous 2 precious, precious trips to Italy. I mean, come on...we've come this far. We have to make it to Italy. Right? No one plans for Holland...it's not the trip I dreamed of-it's different, I've heard of it, yet, I just don't know much about it...and I don't even know if I want to learn more about Holland.

Then, in a miraculous emergency landing, we were spared-but it was touch and go. It did seem that we just might make it to Italy after all...just a short lay over to do a thorough checking of everything. Our captian just asked that we had patience-but he assured us that Italy was in sight. Finally, Italy really looked like it was in our future yet a 3rd time and we were all so very thankful.

So we spent our time so close to Italy, just waiting to make sure we really would end up in Italy, yet a 3rd miraculous precious time...

Then, a different captian came over the speakers and said-I'm sorry, but we were wrong-you're not going to get back to Italy after all...travels there are impossible this 3rd time. But the good news is, you will be going to Holland instead. In fact, it's your only option so you will have to get used to it, as from today on, you'll be in Holland. We'll tell you more about Holland in Mid-May but in the meantime just try and get used to Holland on your own...

Holland...How did WE end up in Holland? I thought we were good to go with Italy!?!

Well, it's been about a week now...

No, we haven't spent much time in Holland yet. There's a lot to learn and many unknowns about this place. But this Holland, is a sweet, sweet place.

Just not what I'd envisioned since I'd dreamed of Italy again. And, although Holland is different, I'm finding myself not caring-not even missing Italy. Holland doesn't seem all that different yet (but I'm told Holland will be more and more obviously different as we spend time here).

Yes, my friends all know only about Italy (at least know of it well, anyway), or only plan for Italy in their future. Just like me, they never dreamed any of us would end up in Holland-but I'm thinking about the positives about how they can still visit us in Holland, and learn about Holland. We can learn together. I know they'll love Holland, even though no one dreams of it, nor plans trips here.

I've been to Italy 2 times before, and for that, I'm so thankful. I still love my 2 trips to Italy and wouldn't trade them for anything. I hope everyone who desires grand trips to Italy IS blessed with them. It's worth it. It's worth every headache and expense and worry. All the time planning, praying-ah, all so worth it...everyone knows or dreams that Italy can be so WONDERFUL!!!

But now, I am focused on my journey in Holland. I want to learn everything about it I can-I NEED to make it the best trip ever, since it's the trip I'm now on. Our family will really love Holland. No, we didn't plan for Holland exactly. But everyone knows that while there may be bumps in the road to planning for Italy, we all still hope to end up there.

We have already accepted our detour to Holland. In fact, it already feels like home. We did not consider this destination but for that brief time while we were still hoping for Italy-always knowing Holland was a possibility...

But now, I find myself concerned that many of our friends and even family don't realize we've landed in Holland. Nor that we are staying here for now. We will make the best of it and just enjoy every minute we are blessed to be here in Holland. Holland is quite beautiful, even though it's not Italy. Yet, how do you tell others about this change in your travel plans-I mean, they all thought you've been essentially in Italy for 4 and 1/2 months! I know I'm confused, so how can I explain how I ended up-- no we ended up, in Holland?

I worry-do people want to know why you're all of a sudden in Holland? Do they think it's weird? Will they be excited for you? Will they mourn for you? Will they tell others that you are in Holland? There ARE so many questions...I know, it all happended so very fast.

Yes, it is different. It is not what we dreamed of when we planned our 3rd trip. It is not where we thought we'd end up. But we feel so very blessed to have this chance to be in Holland and experience this different place. This is obviously what God planned for us. He loves Holland too. I mean, He made Holland. He knows few people plan trips to Holland purposely, yet He wants us to embrace Holland-all of us.

We are looking forward showing you how great Holland is. I want to tell you all about it and how beautiful I've already found it to be!

We still want to help all those who plan for Italy and we'll still rejoice for you when you end up in Italy. We just want you to see that for us and many, many others, Holland is really, really great too.

We even think about another try at Italy...down the road, of course. But who knows where God will take us. We may get to plan another trip or just enjoy our 3 trips-different but equal, to both Italy and Holland. Lord knows there are challenges along the way with ALL trips!

We hope you'll visit Holland and embrace Holland with us-it's not really all that different from Italy. It's still so, so beautiful, and fun, and worth every tear and ounce of energy that went into planning for Italy. I'm not mad that I'm not in Italy again. I don't want you to be either. This change in our destination will make all of us appreciate Holland and so many places other than even Italy so much more. Man though, I still love Italy. Both trips. Everyday.

But, I am so excited now that I know I can just enjoy Holland. After all, His plans are not our plans...but His plans are perfect. Whether Italy, or Holland, or wherever...

I am looking forward to sharing more with you about Holland!

Oh, by the way...I've found in this short time that thousands of people end up unexpectedly in Holland...it's nice to know that there are others who were in our situation who already know some things about Holland and want to help us get used to it here. :-) Not everyone isin Holland like we are because they have a child with Dwarfism, but all have children with a variety of special needs. This story was originally written by a mother whose son was born with Downs Syndrome...Owen doesn't have that, just in case you thought everyone in Holland is the same...there are many different reasons to end up in Holland;-)

---Not the end, but just the beginning.

Wednesday, March 21, 2007

My sweet little Owen

Ok, so I know this blog is "mostly" about my sweet little Owen...but I just wanted to reitterate how I feel about him...he's so sweet (and little;-).

We had our trip to Indianapolis March 17th to see the specialists from around the country who came to the first ever LPA Midwest Conference. LPA stands for litttle people of America. Many people don't realize that Little People are also known as dwarfs. A little person usually has a genetic condition involving the growth of their bones, and thus can have varied health challenges. They don't typically attain an adult height over 4'10"-but most are 3-4 feet as adults.

My precious Owen was indeed given this diagnosis. The many geneticists who saw him found different variances that all point towards a likely diagnosis of a skeletal dysplasia aka dwarfism. They were not sure of his type as it is typically said there are over 200 different types. One specialist (who found the gene for Achondroplasia, the most prevelant type) reported he believes there are over one thousand different types.

It was an amazing day where LP's and average size people-parents, grandparents and various support people of LP's all came together to learn more about their conditions and ways they can better manage their conditions. The doctors who volunteered their time and medical services were outstanding. One MD who was not even scheduled to see us, took great interest in Owen, and he saw us sitting on the floor in a waiting area and he came over and laid on the floor on his belly and talked to us and cooed with Owen, trying to figure out if he could help us. It was amazing to experience this type of genuine and obvious desire to help. He was one of the doctors who told us that he believes Owen does have at least some type of mild skeletal dysplasia. By the way, Owen stole the show as everyone adored him all day long!

We were not officially diagnosed because diagnosis can be very complicated. Owen has already had various types ruled out. The typical route of diagnosis is thru exam, skeletal studies (done via full body X-rays), and sometimes blood tests. The blood tests are only helpful though, if you know what you are looking for. The head MD who was over Owen's care is the same physician who viewed Owen's x-rays at birth (he didn't actually examine Owen then). At that time he did not feel the x-rays led to a diagnosis. But with this examination, he told us that he too believes Owen will be diagnosed with a mild form and that it can be a big deal later in life or never amount to much other than less than average stature. He will see Owen May 16th in Indianapolis again, which is the same day Owen will be evaluated for his hearing/fluid in his ears, and he will see a urologist as well.

All in all, I am relieved. I just love him so much...I didn't really care what the answer was but I just wanted to know so I can know that as his parent, I am doing as much as can be done and that we can prepare for his future and watch for various complications that can arise. Whew, that was a long (and run-on) sentence. It is amazing to me to think that God loves Owen more than I do. But He does. It is also humbling to me to think that God decided that the very best parents for Owen are Tim and I. No parent envisions their children before they are born as anything other than perfect-per the World's standards anyway. I know Owen IS perfect in God's eyes and I believe he will be a small but mighty man of God someday. I'm sure his story will be inspirational to others and he will be a great testimony of God's perfect and wonderful plan for each of us. I look with great anticipation to his future-I can't wait to see how God uses this precious child to continually bring Glory to Him.

Please be praying that we do get a diagnosis and that it would be correct (as it is common to get many misdiagnoses). And also that Owen would continue to progress and gain strength. He has a lot of catching up to do, mostly because he was 2 months premature but also because he has other challenges due to his physical characteristics that make motor skills a little more difficult to learn. He is doing WONDERFULLY in the verbal category-we swear he says "hi!"

It is normal to have questions and concerns and I would be happy to answer these things. Additionaly, a great site with lots of info about Little People is www.lpaonline.org It does a great job answering various questions and misconceptions about LP's, etc.

Thanks for continuing to check back on updates about our precious Owen...our sweet miracle baby.

Thursday, March 08, 2007

Call CPS...
















First Tim leaves him covered on the couch, and tonight I forgot to strap him in his swing. Poor, poor baby! His little feet were dangling over the seat end. Note to self...strap baby in.

Thankfully, the Lord protected him again!:-)

Just thought I'd update about his last appt. It was a week ago on the 2nd (just a day shy of his turning 4 months old). He weighed in at 9# 12 oz...a seemingly amazing 7 pound gain from his birth weight. Not many babies have trippled their birth weight at 4 months...I mean can you imagine your 4 month old weighing over 20 pounds? (ok, maybe my sister in law Les could) :~P

His length was 20 1/2 inches. He was 14 1/4 at birth so great strides are being made there too, even if he is just in newborn size clothes (with the sleeves rolled up;-). He's actually a little tub if you look at the weight for height growth charts. He is in the 90% percentile!!!

But, for his age (even corrected to 2 months) he hasn't quite reached the lowest percentile on the weight and length for age charts. I was encouraged though that if he has nothing genetically wrong, there are options in the future to help him along.

Nonetheless...I don't care. He's so amazingly sweet and precious to me. His smiles melt my heart and warm my soul. I am enjoying him so much...even more than my first two. I think it's also a maturity thing. There are so many stressors as a first time mom, etc. But now, I'm quite laid back and relaxed (at least for me).

I feel back to normal again too...well, my normal anyway;-)

I am heading to Indy on the 17th to see geneticists and other bone dysplasia specialists to see if we can get a diagnosis...I don't care anymore whatever may be. I just think it is wise to know as much as we can so that we proceed thru his infancy, etc properly. It will be a long day but I am excited about it. My sister Heather is going with me so, I'm quite excited to spend the time with her.

I guess that's all for now. Blessings to you!