Sunday, September 30, 2012

The Little Things...

I have to say that I love my life. I am very happy and am so grateful I'm able to stay home to take care of Evan. I have no desire to be a stay at home mom forever, I look forward to teaching once again. Once Evan is in school or at least verbally communicating, I will feel more comfortable with him being 'independent', from his mother anyway. I have been blessed with a loving and supportive family (both sides) and have some incredible friends to top it off. My husband is truly amazing. He works so hard for us and is making it possible for me to stay home right now. He is crazy about Evan and Evan is crazy about him. This amazing life would not be complete without my precious baby. He is the light of my life. He gives me my energy and makes me unbelievably happy. That's why I appreciate the little things since I am so fortunate for everyone and everything I have in my life.

These are just some of the little things I LOVE about my life:

      ~ Evan's smile. I literally am bursting with joy and love when I see his face light up with a smile.

      ~ Evan's laugh. It is hard not to laugh never mind grin when he giggles. And no matter the type of day I am having, his laughter always makes it so much better.

      ~ The way Evan looks at his Daddy. His eyes are especially mesmerizing as he admiringly glares at his Dad with nothing other than a happy face. I can feel Evan's energy change when Joe walks in the door at the end of the day. When Joe changes and puts Aquaphor on Evan, I can hear Evan's belly laugh coming from the changing room (on the second floor!). I feel like Im floating on a cloud to see the love Evan has for his Daddy.

      ~ When Evan giggles at Bruli. Bruli is always running around and acting crazy. After all, he is not much older than Evan. Funny enough, Evan loves Bruli's hyper intensity and feeds off of this silliness to be silly too. There isn't a time when Bruli is fetched a ball and Evan doesn't hysterically laugh and giggle.
      ~ The feeling I get when Joe pulls into the driveway. Totally serious! I feel like a kid on Christmas day when he gets home from work. I think it's cute that I still get butterflies when I see my husband after being away from him for the day.

      ~ When Nibby (our cat) comes running inside late at night. We live in a forest and there are all kinds of wild animals around. I get so nervous to let the cat out at night but he will do anything to get out and I mean anything (he'll scratch at the door, knock things off the table/counter, claw my needle point chair or mattress). So late at night when I finally try to get him back inside, I am elated when he comes spirinting in from the darkness. Nibby 365+; wild animals 0. And I hope we can keep it that way!

      ~When Evan naps. My break, which are becoming more scarce as he gets older. But when he does nap, it is such a relieving feeling. For one- he is saving calories and two- I get to put my feet up for a bit! 

      ~Saturday mornings. Having Joe home is awesome. It's kind of weird being home alone all day everyday with Evan. When the weekend rolls around I am so excited to have Joe around to hang out with and obviously help take care of Ev-Man. Evan usually gets a Daddy bath Saturday mornings which are a nice change after morning baths all week with Mommy.

      ~Shopping with Evan. Evan is very use to and comfortable in his car carrier for travel and in the grocery store. I LOVE to go grocery shopping and Evan is so good while we are out, that it makes the experience more enjoyable. He likes to look around and investigate the scene and will not let me put up the visor since it blocks his view. The stimulation is good for him and I tend to go to the same store so the employees remember us, well at least Evan. Shopping without him just doesn't feel right.

Precious moments like these are why I love my life so much


Monday, September 24, 2012

Sitting by Christmas???

Evan has been progressing very nicely these past few months. But the one area, specifically, he has struggled with is gross motor. As a preemie, born at 30 weeks 5 days, he was expected to be behind. The saying goes that 'most preemies catch up by the age of two'. Well, not only have we passed two, we are still struggling to catch up with his motor skills. While in the NICU, we were told by a very wonderful and educated nurse that Evan would likely catch up by the age of three. I am HOPING that we can at least, get him sitting on his own by Christmas. And what a Christmas that would be.

With Evan being my first and only child, this is all I know about taking care of a baby. This is my normal. Our normal. I try not to compare his development with other children, especially healthy full term babies. In the beginning I assumed the preemie aspect was why he struggled with development but it is obvious that his condition has been playing a roll as well. His calorie needs have been taking over and have stunted growth and motor abilities. I do find comfort knowing that there are other children, with Evan's condition, who had some physical motor delays as well. But I am very optimistic that he is picking up the pace and is on his way to the motor world.

Snacking like a big boy

There is no doubt that this kid is a genius. His little brain is soaking things up left and right. He is learning so quickly and knows so many things that I probably don't even realize. He seems to  understand what I am saying 95% of the time but just can't communicate back to me completely. You can tell that he wants to move around badly. He wiggles and squirms on his back and could probably get around the room that way if I let him. He desperately reaches and points towards things he wants. I figure since he can't walk to where he wants to go I'll walk for him and he can lead the way. And it usually will be right out the front door since he loves to be outside.

Trying to escape

Evan is bearing weight on his feet for longer periods of time. Usually once he starts to stand, I do not need to support him at all but do, since he will randomly break his knees and refuse to stand any longer. This is still a HUGE progression compared to this spring. He has a prone stander which helps him stand and helps strengthen his legs. He also has a custom made 'tilt & space chair' and we no longer have to use the chair's harness for sitting. In the beginning of this year, Evan was still pulling forward when he sat. The harness kept his shoulders back and allowed him to save some energy while sitting, eating or playing in the chair. Now, I never use the harness and he sits quite nicely. He continues to use laterals to support his lower torso but is in control of his upper body. Sometimes Evan will sit on his own without support. But once he starts to tip or lean, he neglects to put his hands down in reflex to falling. Something we continue to work on.

Oh Yeah- I can stand
(when I feel like it)

The TV show Bubble Guppies are the new best thing for Evan. Other children shows don't do it for him but this one tops the cake. He giggles at the characters with a huge smile on his face and I find him 'dancing' and clapping along with the songs. Luckily, DVR has come in handy so we can watch it at the appropriate time. It's hard to say no to something he obviously likes but I try not to abuse the TV. I will let him watch an episode or two while I clean up his bath stuff and get breakfast ready. Fortunately, it is educational and entertaining at the same time (and the songs are incredibly catchy).

That's a Bubble Guppie smile

The progression Evan has shown over the past few months has been tremendous. It seems to be the biggest jump in development he has made in his entire life. Seeing these patterns of making leaps and bounds, only excites me for the future. I cannot wait to hear his little voice have a conversation with me and watch him run around with Bruli. I am very optimistic that we are not too far away from these huge milestones.

Love this boy


Thursday, September 20, 2012

Beautiful to Me

The importance of beauty and being beautiful has dramatically changed for me over the last couple of years. Though, I was never one to be completely vain or worried about my looks. I don't wear any makeup and rarely fix my hair. Not to say that those who do are vain, but for me it was never really important. Looks or what many think of as being beautiful, is not #1 on my list. I have always felt that inner beauty was most important but now the true meaning of being beautiful, to me, includes the inner and outer. I believe that inner beauty is part of truly being beautiful.

Having my first child was not the experience I had envisioned. Thoughts would travel through my mind, while pregnant, about what he would look like. Would he have my nose? His dad's eye's? My ears? His dad's lips? Not once did I ever think about his skin. Why would I? Ironically enough, sometimes I would think, what if he looks 'different'? And I remember not being too worried about it. Ideally, no, I didn't want him to look 'different' but was it my biggest worry or concern? No.

Once Evan was born, the intensity put my 'mommy mode' into overdrive. It was difficult not knowing what my child looked like or was going to look like; not only because of the armor of skin that he was born with but from all the tubes, pads, and dressings that covered his body and face. And still his appearance was the least of my worries during those early NICU days. Survival, was what I was focussing my energy on. But it was hard for me to see other "beautiful" and healthy babies, especially in the hospital that first week. When I say "beautiful" I'm referring to their skin. I definitely had some envious moments right after he was born. When Huggies, Gerber or Johnson & Johnson commercials would come on, the only thing I would look at was the 'perfect' skin each baby had. During this time, I was a little worried about what people would think or say about the way Evan looked. Which was one of the main reasons why I never shared his picture with anyone, until he came home.

In my arms for the first time

I remember that once I was able to hold Evan, I would imagine what it would be like to put his cheek against mine. I wondered what it would feel like or if it would feel 'normal'. At that time, I was not allowed to even touch him with a bare hand. But it was becoming very obvious to me that I was just focussing beauty around healthy skin. Yet, for years I had never been concerned about physical beauty? The shock and awe factor of Evan's condition had my perceptions thrown off especially since it was something I could have never manifested in my head.

About two weeks after Evan was born, my brother came to the NICU to meet him for the first time. The first thing my brother said was, "He is beautiful." His words struck me like lightening. Beautiful. It was the first time I heard anyone call Evan beautiful. All of Evan's facial features were manipulated by the thick, tight skin. His nose and ears were two dimensional, his mouth was stretched open and his eyelids were flipped 'inside-out' fussing his eyes shut. It dawned on me that I was in a fog and that physical beauty did not define if you were truly beautiful. As Evan progressed, his appearance changed dramatically. He literally was emerging from a chrysalis and becoming the beautiful butterfly he still is today.

Having Evan has changed my life. Only for the better. Not only has he made me a better person but now I know that I really serve a purpose on this lovely planet. He has made me realize what the importance of beauty is in my life and what 'beautiful' really is to me. Being beautiful encompasses all that you are. It is your soul, your personality, your being, your attitude. Appearance can be a part of what some people consider beautiful. There are many people in this world who have beautiful looks. There are many people on this earth who have beautiful skin or beautiful hair. And there are many people on this planet who are just straight up BEAUTIFUL in and out.

One person in particular is Carly. Carly is one of the most beautiful people I had the pleasure of meeting. Carly is Australian and I was fortunate enough to meet her in NYC, while she was traveling. Carly is friendly, honest, motivated, and very positive (one of my favorite qualities). Carly is an appearance activist, writer, blogger, and TV presenter. She has an amazingly positive spirit and is truly beautiful. She does so much good for the world by raising awareness and sharing her inspiring thoughts, beliefs and opinions through her blog especially in regards to one's appearance. Her blog posts are very inspiring and give you an idea of what it is like, for her, to be living with ichthyosis.

"...I am a successful blogger, mainly focusing on the challenges and triumphs of living with a chronic illness and a visibly different appearance. My blog has given me a respected voice that I may not have found in real life. Unlike the trolling that happens online, my blog has been the source of love and respect that I often don't get walking down the street. My blog has been my vehicle to tell my own story in my own words..." Carly Findlay: "I couldn't handle looking like you"

I have nothing but an enormous amount of respect for her with all of the accomplishments she has made in her life. Her view on life open's my eyes, especially since I agree that living with and spreading positive energy is the most rewarding way to live. Check out her BLOG to read more.

In this country, the social media puts a lot of pressure out there in regards to beauty and being beautiful. Beautiful, in the media's eyes, are women that are thin with 'perfect' skin, hair, looks, & body. With these perceptions of what beautiful is, makes a lot of people, primarily woman, compete and compare themselves to this 'standard of beauty'. Though there is nothing wrong with wanting to look your best, but there are many woman who take their physical beauty for granted. For example, I found this television series from the UK called Beauty & the Beast: The Ugly Face of Prejudice. I found this, specifically because it features Nelly, the oldest person in the world living with Harlequin Ichthyosis. It is a very interesting video. Nelly and a beauty model spend 2 weeks together to share their opinions on what 'beauty' is and the importance of physical beauty in ones life. Nelly is such an inspiration and was incredibly brave to take part in this documentary. Nelly believes that you should 'live life to the max and not let anything get you down'. It is remarkable to see how different one person lives than another and how some people take their appearance for granted. There are four parts to the youtube version. If you have the time, I suggest you watch all four parts.

Apparently this youtube video is no longer available.
Now, this series looks to only be available via download.. sorry..

Everyone has their own definition of what beautiful is to them and the importance of physical beauty in ones life. It is completely natural to want to feel beautiful as long as it does not consume your soul. Our society and the public have not made it easy for those who look physically different. Hopefully one day, judgments will not be made upon others who have a unique appearance or are not up to the media's standards of being beautiful. Because Evan is certainly 'Beautiful to Me'.


Monday, September 10, 2012

Inspired by Evan

I really have enjoyed planning and hosting my "It Makes Cents to Help FIRST" fundraiser this past May. I am still in awe of how successful it was and how many generous people participated and donated for an amazing organization. We are so thankful to have so many amazing people in our lives. Together we have raised an enormous amount of money for the FIRST Foundation, who help fund research for a cure.

We are very fortunate that some of our friends were inspired by Evan to compete in marathons and triathlons to help our family and to help support FIRST. My sister is a marathon runner. She has competed in many marathons and ran in the Boston Marathon 3 times. The last time she ran the Boston Marathon, in 2011, she had a special shirt made in honor of Evan. She wanted to help raise awareness for Harlequin Ichthyosis and the FIRST Foundation. Unfortunately, we were not able to attend nor were we comfortable bringing Evan into the busy city during the marathon. I have been there to support her in Boston before (and went to college right on Commonwealth Ave) and it is crazy busy and intense, so I was concerned about Evan and the enormous crowds. Lynn did great and we look forward to cheering her on next time.
Lynn warming up

Ever since Evan was born, a friend of ours was dedicated to help our family and Evan.  She actually started a blog months after Evan was born to raise awareness and to help support our family. She also called into a local radio station during the Christmas season of 2010, to a charity that helps needy children. On 96.5TIC-FM, the morning show Craig & Company were having their annual 'We Are the Children' fundraiser.  Jenny decided to call and nominate Evan as a possible candidate for this fundraiser.  Off air, she told them about Evan and his condition. She explained to them how much work it was for my husband and I to take care of Evan and his skin. She suggested that we could benefit from a new washer and dryer which would help ease my workload, especially since the ones in our rental house were old and not efficient. The radio station called me a few weeks later, on air, and we talked about Evan and our daily routine. They then told us that they would be delivering a brand new washer and dryer with a sanitizing cycle, to help with Evan's care. I was so touched at how generous this charity was and that Jenny initiated the help. 

As a runner, Jenny was inspired to compete in her first marathon for Evan. Not having a lot of time to blog, she created a private Facebook page to help promote the marathon that she planned on running. She earned a lot of money for our family and we cannot thank her enough. It was very exciting to go, to the Hartford Marathon 2011, to watch Jenny compete. We were so proud of her as she ran past us, just strides away from the finish line. We are very grateful for her dedication & gracious spirit; and to everyone who was so generous by donating to our family. Jenny will also be competing in the Chicago Marathon, this year, in honor of Evan.
Jenny and Evan at the finish

This past August, a good friend of ours participated in a triathlon in honor of Evan. His efforts raised over $1,000 for the FIRST Foundation. Originally from Connecticut but now living in Florida, Tom travelled up north to compete in this event. He was not use to the hills and fresh water since he was use to competing on the beaches of Florida. It was a warm afternoon for Evan but we were there to cheer him on. We went to congratulate him at the finish line where he met Evan for the very first time. And YES that is an ice cold Miller Lite in his hand. Read more about Tom's triathlon and how he supported the FIRST Foundation HERE.
At the finish with Tom and Evan

We have had a very successful year with fundraisers which supported the FIRST Foundation.  And we have more friends who plan on competing in the Hartford Marathon this year in honor of Evan and to support FIRST. With all of these fundraisers going on you would think I'd be ready for a break, yet I am ready for another one. I have always planned on doing a t-shirt sale for the FIRST Foundation. With the holidays approaching, I thought it might be a good idea to host another fundraiser. Not only will we be able to earn donations for FIRST but a custom made t-shirt could make a pretty nice gift. I am still planning details and need to get my design down on paper. I am very excited to be crafty.
Stay tuned if you are interested. Mostly, this fundraiser will be local since it may be difficult to send a lot of packages out. I DO have a pay pal account so if anyone is extremely interested in purchasing a t-shirt, contact me at I hope to have things ready to go and shirts made before November. 

I obviously cannot talk about fundraisers and not mention one of the most generous fundraisers we have ever been included in. The 'Possum Queen' is the most entertaining and enjoyable fundraiser I have ever been to. This annual event takes place on New Years Day each year, in a neighboring town. The mission is to help local families who are dealing with medical challenges and the finances associated with it. Evan has been included two years in a row for this charity. We live in an amazing community with so many gracious, generous, and selfless people. Read more about 'Possum Queen' HERE.

Evan has inspired so many. He is my little warrior and has made such a positive impact on my life, with all things considering. He has made me a better person and has made me appreciate the little things in life more than I ever have before. There is not enough room in my heart for the amount of love I have for my precious boy.


Thursday, September 6, 2012

About Me: Being Creative

I have to say that writing on this blog has helped me relax and get a break in a way. I have been able to promote fundraisers to earn LOTS of donations for the FIRST Foundation (over $5,000 to be exact), raise awareness for Harlequin Ichthyosis, and "vent" a bit. Blogging has given me something to do and look forward to other than caring for Evan and doing housework.

I like to be creative and make things; all types of crafts, sewing projects, house decor, photography decor, drawing, painting & baking. Evan's care has been so exhausting and overwhelming that I pretty much stopped doing the hobbies I love and had time for. Prior to Evan's birth, I was sewing a lot more and baking up a storm. Now, when I have free time, I'm usually cleaning or resting. Evan wakes up pretty late (9:00am) so I get up 1-2 hours prior just to have some free time. With a therapist coming everyday and thanks to our 65 pound dog that "doesn't shed", I spend most of this free time cleaning the floors. I want to try and manage my time differently so I can do more of the hobbies I enjoy. In reality that just means the house will not be as clean. :-p

The other day, I pulled a sewing bag out of the closet. Inside were some scraps of fabric that were left over from two baby blankets I made for Evan when he was born. Once I have my mind set on something crafty, I usually follow through as soon as possible. For instance yesterday morning, I used those scraps to make some pants for Evan. About 20 minutes later they were finished. For not having been in the sewing groove in years, they turned out pretty well. I was sewing while standing up and my machine was sitting on an end table. Let's just say, I didn't think I would have enough time to finish before Evan woke up so I didn't bother to create a decent sewing set up.

The 1st blanket I made for Evan (before he was born)

Sewing is my favorite hobby. I received a Bachelors degree in Fashion Design and Production in 2005. I am more into sewing, creating a garment from scratch and quilting than keeping up to date with the latest fashion designers or 'styles'. The nice part about designing is that no matter what I make, it's always 'one of a kind'. I have made myself a lot of clothing but haven't in a long time. Other than the blankets I made for Evan when he was born, it has been two years since I have done any sewing. After making these pants for Evan and having pinterest at my fingertips, the inspriation to get back into the swing of things looks good.

The center of the 2nd blanket I made for Evan 
(I actually made this when I came home from visiting him 
one day, finished it, washed it, and brought it to the NICU the next morning)

As much as I love funky dresses, skirts & outfits, I haven't had much time to create these things. Other than having the time for it, fabric is a necessity and unfortunately I am not very close to a fabric store. That's when second hand stores or thrifting comes in handy. Finding clothing/fabric which I can use to make something else is always a nice way to "recycle" (and I try to be as "green" as I can and even posted about "being green" with Ichthyosis a few months ago). So now I am on a mission to get back into these hobbies that I love.

Sporting his new flannels while getting a smooch from Bru