Beyond Blessed

Tonight I am feeling so blessed.  Great things have been happening for me and Eli, and I don't want it to go by without thanking God for His amazing gifts.

Because of the book Wendy on Wheels Saves the Day....and the fact that we are cartoon characters in it....we have been blessed with a little local publicity.   Our newspaper did a phone interview and printed an article about it.  A local TV station came to our house and did a feature piece on us. It was so cool!  (You can watch the video here)

My heart's desire has always been to have Eli known by others.  And it's happening for us and I couldn't be more excited!  He's been the cover boy for our local Playdate magazine.  I wrote an article for Playdate, also, telling Eli's story.  In two weeks, I'll be the guest speaker at a MOPS meeting, sharing our story with others and trying to give hope to moms who may feel overwhelmed, isolated, or exhausted.

Raising Eli has had it's fair share of challenges, that's for sure.  But, being his mom and seeing what a happy child he is, even though he has so many challenges, has been the most amazing thing I've ever experienced.  I can't believe some of the amazing moms of special needs kids I've met along the way.  Moms who inspire me, educate me, listen to me, and simply "get" me!

The last two years with Eli have been the best so far.  We've finally figured his feedings out....and he's actually weighing in at 25 lbs!  There was a time I thought he was withering away before our eyes!  He is so easy to take places.  He's tolerant and content.  He loves looking around and absorbing the world, all the while cracking up as Elmo plays on his iPod.

I can't imagine life without Eli's laugh in it!  Here's a little glimpse into my world....my favorite sounds: 

Eli's chatter and his laughter.

(He's learned to squeal like a little pig!  It's adorable to us.)

This is Eli having a very good time:

To all my new readers....WELCOME!  

To all the rest of you....Thank You for continuing to come back!

I have big plans for my blog....so stay tuned...  :)

Blogging vs. Facebook

I'm torn.

As of today I have 226 friends on Facebook. I love the instant gratification of updating my status or posting pictures and immediately having a response to it! Whether people just click the "like" button (letting me know they were there) or comment (which makes me feel so connected to the outside world) - it makes me feel happy. My special world feels not so lonely. I have family and friends encouraging me daily....it's quick, easy, and just plain fun!

Blogging takes time. Time to pull all my thoughts together so I don't sound like a moron. Time to load the pictures into Blogger. Time to edit it all so it sounds coherent and the pictures go where they are supposed to. Time to wait for feedback. Then time to wonder why I put so much effort into my blog when the payoff is so small. I've always viewed my blog as a journal, so I rememeber dates and times of special events.....but Facebook is able to do that also, with much less effort.

Don't get me wrong! I'M SO THANKFUL FOR THE HANDFUL OF YOU WHO FOLLOW ME AND COMMENT REGULARLY! I've built some great blogland friendships because of your faithfulness!

But, I'm trying to figure out how much time on the computer is TOO much time. Lonnie and I have talked about implementing one day a week where we spend it "Unplugged". I've given up reading several of my favorite blogs because it just all takes too much time!

I could be using my time to read my bible. More books. Learn about how to better care for Eli. We could go more places and meet more people and do more things.

Spring is here. Life is shifting for me. I'm not sure where I will end up, but I'm taking some time to figure it all out.....so thank you for understanding my long absences on my blog.

We did go do something fun yesterday! We have a local magazine our newspaper puts out bi-monthly called Playdate. It's full of info for entertaining your kids in our valley. Well, yesterday they had and Expo downtown at our convention center. It was full of booths of local vendors and home sales party companies....but it was also full of wonderful kids activities. There were two big jumpers. Play areas. Game areas. Arts and Crafts areas. A stage with fun shows to watch. A food court. Face painting. And the best part of all: Characters roaming around for you to get your picture taken with!

Eli finally got to meet Ronald McDonald:

I worked there in high school, so it was a big deal for me. I really wanted this for my scrapbooks!

It totally cracks me up that he's making a funny face like "Get this weirdo away from me!"

Eli was having a bad day. Turns out his stoma is infected....again!

So, we didn't last very long at the Expo. It was crowded and noisy and he couldn't hear his music.

His tummy hurt and his body was wild. Being in his stroller wasn't his idea of a good afternoon so we came home after about 45 minutes.

There's always next year, right?

A Never-Ending Journey

     Today, Melanie over at Better Than Normal posted "Everything Out On The Table".  She's overwhelmed, depressed, and coming to the realization that she's "not the super mom she wanted to be."

     Last week Katy over at Bird On The Street posted "Jealousy Jane".  Sharing the difficulties of seeing other families with multiple children, all healthy, and we don't even have one healthy kid.  She quickly followed up the next day with "Counting My Blessings" because she is not about being negative.  Just real.  Admitting the struggles we all face as the moms of special children.

     It made me realize I need to start pouring my heart out more - because that's kinda what a blog is for (and my big sister always wants to know 'what I'm really feeling') - and being more transparent in my writing.  Which is gonna be hard for me to do!  We are very private people.  We don't like to let everyone in on our problems.  We'll figure them out ourselves thankyouverymuch.  It's easier to pretend everything is fine, than to tell someone you feel so overwhelmed with life that you want to just run off and join the circus.

     But, Eli is going to be 5 in August.  Five!!!  Seriously.  Lonnie and I are amazed at how fast the time has gone by, and we know it's not going to slow down any time soon.  So, here is my attempt and putting it all out on the table and telling you how I really feel....

WE ARE:

• On a Never-Ending Journey.  Most parents have a destination with their kids.  The kid graduates from High School, goes to college/gets married/has kids/buys a house/visits occasionally.  You get your house and life back.  You get added family members.  New experiences, etc..    We don't have a destination.  We just have a journey.  Living day by day just keeping him alive via tube feeds.  We worry who will care for Eli when we are too old and/or gone from this earth.  And that's assuming he'll outlive us.
• Disappointed that he's had such health struggles that we weren't able to do all the amazing therapies we wanted to take him to. 
• Sick to our stomachs that he has NOT gained weight in THREE YEARS!!! 
• Overwhelmed at the thought of how school is going to work for him.  A simple cold just put him in the hospital for two nights.  How will he ever handle all the germs at school?  We've quarantined him every winter.  He stays healthier that way.  But he needs to be around his peers.
• Feeling like the world is very small because we only leave our town to go to Children's Hospital in Seattle.  We haven't had a vacation in 5 years.  Eli and I have gone to my Aunt's house to visit for long weekends....and for those I am incredibly thankful!!!  But other than that, we have done nothing fun as a family.  That sucks.  A lot.
• At our wit's end because no one can figure out what is wrong with Eli.  Did I mention he hasn't gained weight in 3 YEARS!?????

HOWEVER, WE ARE ALSO:

• So madly in love with Eli that we can't imagine life without him.
• Thankful for every day God blesses us with his care.
• Enjoy his laugh more than anything else in the world.
• Positive that he is THE BEST kid in the whole wide world.  Just try taking his blood while he's sleeping....he'll let you!  Because he's awesome like that!
• Thankful to have a house with a huge paved driveway where he can run in his Bronco.....his biggest accomplishment in life!

"I LOVE YOU MORE TODAY THAN YESTERDAY. 

BUT NOT AS MUCH AS TOMORROW."

So, how'd I do?  Did I get real enough for you Sis?  :)