Life as a Leach

http://youtu.be/Yzejd6r9DwE Nothing is impossible for You...You hold my world in your hands...

I recently found out that the lead singer of Sanctus Real has a medically fragile child.  His son, Bowen, has Hypoplastic Left Heart Syndrome, a rare, serious heart problem.  This is the same syndrome that the infant son of a teacher-friend of mine has, and he is currently fighting hard in the hospital!   As I was reading Bowen's Story , I learned that many of Sanctus Real's songs were inspired by their story.  When I read the lyrics to this song, they definitely tugged at my heart strings.  He gets it.  He gets it in a way that only the parent of a medically fragile child can. We're heading to CHOP next week, so this was a very timely reminder as we continue to discover God's plan for Abby's life. Love You Tightly It's my reality, you don't belong to me I know we're living on borrowed time And when I look at you, I can clearly see A gift that I may only hope for a while So while we still have time I'll love you tightly but hold you l...

A new take on gratitude on this Thanksgiving.  I love this song.

Remember last week how I said that when we first brought Abby home, I doubted whether I would be able to handle a true emergency?  Well, it didn't take long to face that concern head-on...just one week, as a matter of fact.  Today marks two years since we almost lost Abby. You can read all about what happened in this post .  Turns out, she had RSV.  I'm not going to retell the story, but I will say that the image of Abby lying there, blue, will stick with me forever.  I really thought I was losing my daughter in that moment, and I still tear up when I think about it. During our hospital stay, this situation, and in many other situations we've had with Abby, many well-meaning people quote the old saying that God won't give you anymore than you can handle.   I  used to say it too! But now, after having a front-row seat in Abby's life, I truly believe that God will give you the strength to handle anything that you face. There's a difference there....

Please watch this video.  You won't regret it.  Get your tissues ready--especially if you are a special needs parent! "When those eyes are looking up at mine,  every trial,  every fear,  in that moment disappears.   And you realize  that it's all worthwhile  when it's your child." This is just about as true of a song as anyone could write.  This woman is a special needs mom, and she wrote from her heart. I'm often asked how I do it all. My first answer is that God will give you strength to handle any situation. This is my second answer.

Little Mozart has discovered the piano! This girl LOVES music.  She dances and claps to any kind of music, and really enjoys the piano.  Her favorite song is "Little Red Wagon" by Raffi.  She starts bumping up and down as soon as you start singing it! As a fun giveaway to celebrate 200,000 hits, I want to hear about your favorite songs!  Simply leave a comment here, on Facebook, or through email sharing your favorite song, the name of the writer/band, and a short little statement about why you love it!  You can enter up to 3 songs!  Just post each entry separately, because I'll be numbering all of the entries and having Caleb choose a number.  Multiple songs in one comment will only be counted as one entry. As a bonus, you get an extra entry if you link this giveaway to your own blog or Facebook page!  Just write in a comment that you did so.  (You can get an extra entry for each one if you put it on your blog and FB page!)...

...what it means to be loved. We love you Abby!

...except, apparently, at school.  Caleb isn't singing any of the songs at school, but he lives his life in song at home.  I can't figure that kid out!  Enjoy Caleb's version of "Give Thanks." :)

33 Miles is one of my favorites these days.  I'm a big fan of the chorus and the line "When I'm shaking like a leaf you're the comfort that I need that melts my fears away." This is also 33 Miles.  Told ya I liked them! This is an oldie, but a goodie.  I still can't really sing it without a few tears.  It's just one of those songs. Matt and I had an opportunity to see Carrie Underwood in concert a few weeks ago.  It's safe to say that both of us kind of lost it during this song.  Good thing we were in the back... I have always, always loved this song.  "Let me know that you hear me.  Let me know your touch.  Let me know that you love me.  Let that be enough."

Sing-Along Matt and I have both taken to playing songs on our iPods for Abby while we're with her. I have found that the music (carefully selected!) really calms her down when she's agitated. I feel like she is even starting to recognize some of the songs, like "Our God." Maybe it's coincidental, but she gets really excited and usually smiles when it is played. :) Another song I play a lot is "What Faith Can Do" by Kutless. Here is a link to the music video on You Tube. http://www.youtube.com/watch?v=u1JBSQMkQEo And here are the lyrics: Everybody falls sometimes Gotta find the strength to rise From the ashes and make a new beginning Anyone can feel the ache You think it’s more than you can take But you're stronger, stronger than you know Don’t you give up now The sun will soon be shining You gotta face the clouds To find the silver lining I’ve seen dreams that move the mountains Hope that doesn’t ever end Ev...

A Few More Updates I forgot to tell you in my last post that Abby got her trach changed this morning by the ENT team and everything looks great! The site is healing nicely and she was able to get all cleaned up. She even has a cute trach wrap that goes around her neck now. It's blue with white stars. (I told Abby maybe I'd start making a line of trach wraps, but Matt informed me that he didn't think there would be much demand for them. Don't you think a Vera Bradley trach wrap would be cute?!?) With the trach being changed and Abby being on the C-PAP now, I might just get to hold her and begin working on the bottle tomorrow!!!! Yay for progress! I will also begin learning from the nurses how to take care of Abby's trach. There are specific classes I will be taking down the road before we bring Abby home, but I am anxious to begin learning so that I will feel comfortable when that [glorious, wonderful, amazing, tearful] day comes and we'll drive away...