What a Beauty!

It's hard to get pictures of Emmi because she always wants to be silly! I was able to catch a few today though:-)

Summer Nights

Aiden and Max chillin' on a hot summer night!

Look At What I Caught!!!!

WELCOME TO HOLLAND

WELCOME TO HOLLAND

by
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.

I LOVE THIS POEM.  IT IS SO TRUE.  'HOLLAND' IS A WONDERFUL PLACE TO BE AND I AM SO BLESSED TO BE HERE!

Pictures from Max's Birthday

PRESENTS!!!

Look at me!  It's my Birthday!!

Mmmmmmmmm!  CAKE!!

Celebrating with Max

Max's First Birthday

Well, today is the day that, one year ago, my life was changed forever.  Max came into our lives and, for the first 10 hours of his life, things were wonderful and I think our lives would have gone on as it had before, with the addition of one more bundle of joy to love.  But things abruptly changed at 2pm on his birthday when the doctor said she suspected Max to have a form of dwarfism.  I look back today on all the emotions I had at that moment and for the weeks that followed.

My first emotion was disbelief.  Dwarfism???  Dwarfism???  What does this mean?  I couldn't even wrap my mind around the word Dwarf...  I had given birth to a "dwarf baby."  In my whole life, I had never even met a dwarf/little person and I had just given birth to one?  Then I felt fear.  The doctor told me that he would have a higher risk of SIDS because of the risk of spinal cord compression.  He had an MRI and a sleep study before he was even 6 weeks old.  There were appointments with genetics and neurologists and lost of scary "what if's" before we had the final diagnosis of achondroplasia.  I even felt sad.  How would the world react to my dwarf son?   Would he be made fun of and ridiculed?  I even thought out as far as high school dances and dating.  I cried for things that could happen and things that had never happened and that wouldn't happen for years to come.  It was a very difficult time for me, the most difficult time in my life.  I prayed for the strength to make it through those difficult days and I truly believe I was not alone.  I often think of the poem "Footprints" and I am certain that, after Max was born, there was only one set of footprints in the sand.  There were complete strangers that, looking back, had undoubtedly crossed my path by the grace of God.  Like the poem, "Welcome to Holland," I truly grieved the loss of what I had expected life to be like when Max was born.

But the biggest emotion I felt was LOVE!  I LOVED this little baby of mine SO MUCH, no matter how long his arms and legs were.  He was PERFECT in my eyes and he was truly just exactly the way God intended him to be and HE WAS MINE!!!

My life has changed so much since the birth of my little Max.  I have met so many wonderful people and have become part of a wonderful community of people through the LPA.  I have made friendships that I know will last a lifetime and have been introduced to some amazing people who just happen to be short statured.  I have watched Max grow month after month and do things that just amaze me!  He is so determined and nothing holds him down.  If he wants to get to something, he just figures out how to get it.  He does some things very differently from the way Aiden and Emmi did it and it makes me so proud!  He is angelic and delightful and he makes me smile every day.  Aiden and Emmi love Max so much!!  Aiden is so proud that his brother is so unique and tells everyone his brother is a little person.  I think of Max and my heart swells with love and pride!  I embrace his uniqueness and look forward to watching him grow up and do all the things that he wants to do.  I have had such a great support group of other parents who have assured me that, for the most part, everything will be great!

So, here is the update on what Max is doing now.  He is pulling up on EVERYTHING and wants to check everything out.  His favorite spots are standing at the sliding glass doors and looking outside and standing holding on to the bottom step.  He crawls all over the house and he is FAST!  He is saying "hi," "mama," "dada," and "Aiden" (we are pretty sure!!  It sounds just like it!).  He is sitting up while holding onto his toys.  He smiles ALL DAY LONG!!  He has never been much of a giggler, but has been giggling a lot yesterday and today!  He loves grilled cheese, cheerios, toast, pancakes and, as of tonight. CAKE!  He still does not sleep through the night and gets up 1-3x every night to nurse...  I love the snuggle time and will miss it when he starts sleeping all night (but I am EXHAUSTED!!).  He still has no teeth!!!  I think the top 2 are getting close to popping through though!  He is growing and changing each and every day and I am loving watching him.

It has been a very busy year and my baby is growing up to quickly (as they all do!).  I look back on all the emotions that I had after he was born and feel almost silly that I worried so much about things.   I know that it was normal to feel all those things, but I had no idea that life would be as great as it is now.  I take the opportunity often to educate people, even complete strangers, about dwarfism.  (TLC and Discovery Health have really  helped a lot too!! :-)  ).

Today, as on the day Max was born, I shed some tears.  But today they were only tears of pure happiness and joy.  I love this little boy more than words can say!!

Max- July 21, 2009

HAPPY BIRTHDAY MAX!!!

All smiles!

"What you talkin' about?"

Looking very mischievous 

My Birthday Boy!!

Max's favorite pastime-Standing and looking outside.

I see you Max!!

Love those brown eyes!

Yummy!!

HAPPY BIRTHDAY TO MY AMAZING LITTLE BOY!!!!

We love you soooooo much Max!!!

Aiden "shaving" in the shower!!

What a big, handsome boy!!!

Max found the Tupperware drawer!!!

Emmi LOVES her Tibby!!!

Emmi's new coat

Here is a cute picture of Emmi modeling her new winter coat. Hopefully, we will be able to take Emmi skiing this year. Aiden started a few years ago and absolutely loves snowboarding. I need lots more warm summer days though before I can even think about snow!!

Sitting up!

Max is just starting to sit up now. He sits while holding on to things and playing. He is so mobile now and just crawls from room to room stopping to play with things along the way. He loves to stand up at the sliding glass door and watch outside. I will try to catch a picture of him tomorrow doing it. He is so cute!!

Great Times in Nashville!!

Well, we attended our first LPA National Conference and we had a SUPER time!! We arrived in Nashville on Saturday afternoon. It seemed to take WAY longer than we expected to get there from Cincinnati, even with the hour we gained! We met up with Sarah (from Annapolis) and her adorable little Tessa, and got to meet our new friends Jodi, Jeff and there adorable son, Alex. After getting settled at the hotel, we grabbed some dinner at Demo's and went down to the Riverfront. Aiden got an official cowboy hat and he looks like a country western star in it! Emmi almost literally got run over by Julianne Hough (from DWTS), who was the guest performer that night. (Eric just informed me that she is dating Ryan Seacrest now!! FYI!). It was a beautiful night and we watched some of the show before heading back to the hotel.

The hotel was PACKED and there were people milling around all over catching up and making new friends. We saw the whole Roloff family all over the whole week and Aiden was really looking forward to meeting Zach. One night I was in the elevator with Max and Zach and his buddy got on. Aiden was bummed to have missed that! We finally did secure a quick photo op on Tuesday with Aiden and Zach and Aiden is looking forward to showing it to all his friends. I also got the opportunity to chat a little bit with Katie, one of The Little Chocolatiers. She was very sweet (but unfortunately wasn't carrying any large chocolate bowling pins in her pockets:-) hehe!).

On the 4th of July, we met up with a large group of other POLPs (Parents of Little People) at The Old Spaghetti Factory. It was so nice to finally meet the people I interact with on Facebook and in the Yahoo group. After dinner, we went back to the hotel and Aiden and I snuck out down by the Riverfront and watched the spectacular fireworks show! The Nashville fireworks on the 4th are rated #2 in the country (after Boston). They were great!!

We attended a parents meeting and some medical sessions that were informative. We also had an appointment with Dr. William McKenzie from the A.I. Dupont skeletal dysplasia center in Delaware. He thought Max looks great! He has a minimal kyphosis and he encouraged us to allow Max to pull to a stand and start to sit. The general rule is, if he does it by himself, it is ok. Max has been pulling to a stand for the past several weeks and has started sitting while holding on when he tires from standing. He is soooo proud of himself when he does it!! It won't be long now before he starts cruising! We really liked Dr. McKenzie and would definitely use him as a second opinion as needed. We are very happy with Dr. Ain at Hopkins (who is also an achon and has a child with achondroplasia), but appreciated the opportunity to see other doctors at the conference.

Aiden and Emmi spent a lot of time in the children's room while we were at meetings and they both had a great time. Emmi played and bounced in a bouncy house and Aiden met some buddies and played soccer. Aiden really enjoyed himself the whole time and made lots of new friends, both average height and little. Emmi commented a few times that some of the people were "little" but overall, it didn't even phase her. I think everyone should have someone in their lives that is different. I think we would live in a much more compassionate and accepting world.

We had planned to start home on Tuesday and stay half way on Tuesday night, but we were having such a good time that we stayed over Tuesday night. We went on one of the Duck boat tours that drive around town and then drive into the water. It is a DUKW amphibious vehicle from WWII. The kids really loved it! Aiden got to drive the boat too!! Then on Tuesday night, Aiden and I went down to the dance and he met up with some of his buddies and danced up a storm. I wish I had gotten some video!

Well, it took about 10 hours (with stops) to get home, but we made it without any major meltdowns:-). We will miss all our new friends and look forward to meeting up again soon!

Max and his best buddies!

Max, Tessa (and Sarah) and Alex (and Jodi)

Emmi Ioves her new friend Tessa!

Pulling up to sit all by myself!

We have been told that if he does it on it's own, it is ok. (but I still won't let him sit like that very long). He is sooo proud of himself!!

I'm cute!!!

Standing up in my stroller

Best buddies!!!

Maxy and his girlfriend Tessa!!!

Still having a ball

Riverfront with my little Cowboy

Aiden too!

Emmi enjoying herself!

Chillin' at the bar at my first Nationals

Emmi on the Dodgems!

Nashville here we come!!!

We are headed to Nashville for our first LPA National Conference!!! We left on Thursday at about 7p and drove to Cincinnati. We didn't get in until almost 1am and it was a LONG ride with 3 kids!!! They each picked a different time to melt down, so we ended up stopping even more than anticipated. They all slept well and we went to Kings Island for the day yesterday. It was a beautiful day and the kids had a great time! We met up with a colleague of Eric's and his family who live in the area. They have 3 boys and his wife is also a family doc so we had tons in common. Aiden and I rode The Beast, (ugh!! Wooden roller coaster-4+ minutes of torture being jostled around like a rag doll. I need major realignment now!!) The Vortex and The Racer (both in the front row!).
Emmi had a ball on all the Planet Snoopy rides. She smiled all day and no meltdowns!!!! She was awesome! It was a very long day and the kids were exhausted. We left the park around 8p and had pizza at Eric's friends home. Amazingly, the kids still had enough energy to jump around on their trampoline! We finally got back to our room at midnight and the kids fell into bed! Zzzzzzzzzzzz!

My plan was to be up and on our way this morning at 9am to be in Nashville around 1:30.... We didn't actually leave until 10:15 BUT we gain an hour on the drive so we are still right on schedule :-). I am looking so forward to seeing Sarah and Tessa! Tessa is about 15 months old now and she and Max will be able to play. Last time they were together Max wasn't crawling yet but now he is crawling and pulling up to stand on everything so I am excited to see them together! There are so many other families that I have met on Facebook that I am looking forward to meeting as well. I have over 60 POLP (parents of little people) friends on FB. It is such a great community! I will update with photos soon!!
1hr 47 minutes left by GPS..... Hope it goes quick. The natives are getting restless!!!