Wednesday, November 28, 2012

Our Bizarre Stranger Encounter

Yesterday Evan had his monthly ENT appointment. These visits are crucial for us since I am obsessed with keeping his ears clean and free of skin debris. You can see in the video I posted, My World & Ichthyosis, that it is a never ending battle removing skin from his ears. Not only in those nooks and crannies but down his ear canal, up to his ear drum. There is an ENT office a few miles closer than Yale, cutting the round trip drive down to 100 miles. To top the morning off, it was snowing and raining. But the drive wasn't too bad, what happened in the waiting room was what made the trip weird.

Once we walked into the office, the waiting room was packed. It wasn't our typical appointment time so I wasn't surprised. Of course, as when we go to most places, everyone had to have a look at Evan. Most of the reactions or expressions on others faces were typical. A few of the 'eagerly trying to look again' folk too. I ignored it as I usually do with a smile. So I checked in and sat down rolling Evan's stroller up to me. He was directly facing another man, who ironically enough was one of the 'eager lookers'.

I grab a bottle and gave Evan a little drink. I talked to him and had him play with his teddy bear. I noticed the man next to us had his phone and was playing on it. Or I thought. All of a sudden I hear the snapshot of his phone camera. I jolted my head up and looked at him then instantly and obviously turned Evan's stroller in the opposite direction. It was instantly awkward but I didn't say anything. I looked around the room and with the way things were positioned and the way he was holding his phone, unless he took a picture of himself, it was of Evan. Really? People really do things like that? So weird. And if he did take a picture, what exactly would be he do with it? Show people he saw a red baby? I don't get it.

I am not the confrontational type of person but of course now I wish I said something. Luckily, I happened to be texting with Courtney (Brenna's Mom) and she was quick to defend us which made things less awkward for me in the waiting room. :-) Our doctor came right up to us to greet us and chatted with Evan before we went in. I was tempted to mention the situation in the waiting room to him but I didn't. And though it still bugs me, we move on because it unfortunately will probably not be the first or last bizarre encounter with a stranger. I want to teach Evan to stand up for himself but when necessary. I feel that killing others with kindness is a more appropriate way of dealing with awkward stranger encounters but obviously defending oneself when needed. I'm a 'glass is half full' type of gal and would rather keep things positive and try not to let insignificant things get to me. Apparently, I have a thick skin too.

And here is some Evan and Bruli cuteness!

Yes, I did it again!


Monday, November 19, 2012

Cute Stuff..

Here are a few super cute videos of Evan. In the first video he takes a few steps (with a little help from Mommy) and the other video is how Evan reacts to his crazy chocolate lab, Bruli. Both must sees! Also, I recently updated my page Cute Stuff. There you can find a bunch of photos of Evan, including progressional pictures of him from when he was first born. And 2 NEW pages!! POWERFUL POSTS and  VIDEOS. I made a page of links to all of my favorite posts and I organized a page of all of the videos I have posted on this blog. All the videos are linked to its original post. It's nice to look back on some of posts and videos and see how much Evan has developed in a short amount of time!

Showin off to our friends in Springfield!!!

Apparently, Bruli is hilarious!


Wednesday, November 14, 2012

Our Journey to Springfield

This past weekend my mother, Evan and I traveled to Springfield IL to visit a special family. I have been looking forward to this trip and could not wait to meet Courtney and the Westlake crew. Brenna, as I mentioned before, is almost 11 months old and also has Harlequin ichthyosis. So many things have seemed to connect us from the start. Obviously, both having a child with the same condition but also Courtney and I are the same age, our birthdays both fall on the 11th of the month AND her husband's name is EVAN!!! So cool!

We got off to an early start Friday morning, leaving my parents house at 3:45 am. Unfortunately we had a layover, but thankfully everything went smoothly. We arrived into St. Louis, MO at 9:30 am. (By the way, Evan was such a charmer on the plane. We had so many compliments on how well behaved he was and he was trying to give the man sitting next to us fist bumps!) We rented a car and headed to Springfield.

Once we got to the Westlake house we relaxed and talked and it felt so comfortable. Seeing Brenna was so exciting and Connor is absolutely adorable! Evan was due for a bath so I 'set up shop' in the kitchen as I chatted with Courtney about his bathing routine. Before we headed to Springfield, my husband and I worked really hard on Evan's skin so it would be easier for me to manage on my own while away from home. So I did not have to put in as much 'elbow grease' as I normally would. After his bath, I was able to see what their routine was with Brenna. I asked questions and was impressed with their set up as well. They got right down to business!

Before we went out to dinner for some Horseshoes we snapped a few pics of our freshly bathed cuties together. Evan was so interested in Brenna and kept trying to touch her face and hold her hand. I really feel like he knew that Brenna was just like him. It was sooo adorable. We were melting. :-)

So precious..

And if this one wasn't blurry... but absolutely adorable!

After dinner, my mom took Evan back to the hotel so I could spend some time with Courtney and Evan W. I couldn't tell if I was imposing and should have called it a night but I was so excited to be there and couldn't wait to talk some more. It was great to talk in person about our birth experiences and Courtney was nice enough to share lots of Brenna's birth pictures with me. Although, I knew Brenna's story and related to Courtney's birth experience, it was totally different hearing her story in person. 

Saturday we had an eventful day out on the town, or I should say city. Courtney was nice enough to do a little photo shoot of Evan at her studio. Then we stopped at a park to snap a few of me and Ev together. After our photo shoot we all headed out for lunch in downtown Springfield. It was a gorgeous day so after lunch we walked from the cafe to the museum. All of the buildings were so beautiful and historical. We then arrived at the Abraham Lincoln Presidential Museum which was incredible. It was great to relearn the history of Abe Lincoln and learn many new things as well. There was so much to see and many of the displays and exhibits made you feel like you were back in the 1800's. One very clever room was set up like a TV studio, recording the Presidential election campaign on a station similar to 'CNN'. Courtney and Evan stayed with my Evan so my mother and I could go into one of the exhibits that was not so baby friendly. It was a play/movie/presentation of Abe Lincoln which was very theatrical with gun shots, explosions, smoke, and vibrating seats. (So glad we didn't bring Evan in!)

Saturday night we snapped some more pics of the kids playing together. Evan was again very interested in Brenna, especially whichever toy she had in her hand. He was acting like that typical two year old who only wanted what he didn't have. And Brenna was doing some excellent reaching to try and get her toy back! Priceless!
Happy and content with a toy...

Wait a minute, what do you have Brenna?

Hey, Evan that's my toy!

And I'm gonna get it back!

Saturday night my mom took Evan back to the hotel again so us parents could go out for a drink. It was so great to have another evening where we could talk and relax without worrying about the kids. I was able to meet some friends of Courtney and Evan who were very nice. I felt as if I fit right in and knew all of these people my whole life. It was such an amazing weekend and I felt so comfortable with Courtney, her family and friends. Not only did we have such a connection prior to this visit but meeting them in person really made me feel like I had a new family. My husband was unable to come due to his work schedule so I cannot wait for him to be able to meet this family as well. We will definitely see them again at the FIRST Family Conference 2014 if not sooner. :-)

Thank you Courtney and Evan for a wonderful weekend. You both are amazing and are doing such a wonderful job raising your beautiful children. Connor is absolutely precious and Brenna is doing so well thanks to all of your great work. I would also like to thank Courtney for inspiring me to finally reach out to the Ichthyosis community. I have met life long friends who we will be forever connected to. She also inspired me to create this blog to help raise awareness for Evan and others. Courtney wrote a post about our visit as well and has some fantastic pictures that you should definitely check out!