Wednesday, November 24, 2010

Happy Thanksgiving

For each new morning with its light,
For rest and shelter of the night,
For health and food, for love and friends,
For everything Thy goodness sends.
~Ralph Waldo Emerson

Happy Thanksgiving!


My mom last Thanksgiving sending a Thanksgiving wish (via a text message picture) 
to my niece who couldn't make it home for Thanksgiving. 
Missing my mom this Thanksgiving Day.

Friday, November 19, 2010

Photo Carnival: My favorite picture of my child

I'm participating in Love That Max photo carnival by posting my favorite picture of Jack.

Love this picture! 

I love this picture because it captures the very essence of Jack -- HAPPY!  There aren't too many babies that would be happy while on nasal CPAP.  Jack was about three months old in this picture. This was before the trach, the vent and the g-tube.  This was before we had any idea that Jack had a neuromuscular disease.  If only I had known where we were headed, I would not have been so stressed out about something as non-invasive as nasal CPAP.  I would have held, snuggled and cuddled with this little boy so much more than I did.

Have a great weekend my friends!

(So much for a blogging hiatus, eh?)

Tuesday, November 16, 2010

As If ...

As if I need something else to get the tears flowing these days.  I downloaded Annie Lennox's new Christmas Album (A Christmas Cornucopia) from iTunes tonight and heard the song "Universal Child" for the first time.  I can't imagine that this song won't move every parent to tears, but especially those of us with kids who struggle every day just to live and do those things that too many take for granted - our extraordinary children who are on this earth to teach us all to love unconditionally, appreciate the simple things, accept what we cannot control and to persevere through adversity.

I invite you to join me in a good cry .............

(there is no video with this, just the audio of the song - so,  just close your eyes and listen)

AND, thank you for all your kind and caring words.  Although I may not sign on to blog as often for awhile, I do get all of your comments via email.  So, know that your comments are received and much appreciated.  I love you guys!

Saturday, November 13, 2010

Take Two

So, I wrote a post on Friday night that I published and then deleted.  It was way too "woe is me" that even I couldn't stand it.  I should know to NEVER write blog posts on Friday nights.  Friday nights have always been the toughest day of the week for me. I could give you all the reasons why, but if you don't live the life, you won't get it and if you do live the life, you already get it, so I'll spare you the explanation.

Things are just really hard for me right now.  I miss my mom.  It's hard losing your mom.  It's exceptionally hard when you didn't get to see her before she died and when you didn't take the opportunity to tell her things you wish you had before she died.  I find myself in tears every day.

I don't like to dwell on how much life sucks at times and I don't like to write about it either.  So, I'm  inclined to say that I'm taking a blogging break until after the holidays because I don't even like listening to myself right now. But, I can't say for sure that I won't have some positive thoughts and happy moments to share over the holidays.  So, my blog posts may be few and far between for awhile, but I promise to jump on and share when I feel like what I've got to share is worth sharing.

Thank you so much for checking in on us and thank you for caring.

Saturday, November 06, 2010

Celebrating 12 Years

Singing "Happy Birthday"

Making a Wish

Blowing out the candles (with a little help from his Sis)

From Grandpa

 Concentrating on the Hershey's Kisses

Sporting her new glasses 

A great 12th Birthday! 

Thursday, November 04, 2010

Happy 12th Birthday Jack!

As I sit at my computer poised to share my thoughts on this, Jack’s 12th birthday, the word that most predominately comes to my mind is “AWE”.  I’m in awe that it’s been twelve years since this journey began.  I’m in awe of all that has transpired over the last twelve years.  I’m in awe that Jack and I are both still here to talk about it.  Mostly, I’m in awe of the love of life that Jack exudes every day despite all that has been stolen from him by the insidious disease that has riddled his body.  This child who cannot purposefully move any part of his body, save a few fingers; who cannot sustain his breathing without the assistance of a machine; who has never enjoyed the experience of eating food; and who has never spoken the words his mind so clearly holds - this child wakes up every morning with a smile on his face and eyes that sparkle with the anticipation of a new day.  I am in awe of this child. 

My greatest wish for Jack this birthday is that more of the people who cross his path would acknowledge his presence and take a moment to appreciate what he has to say.  Jack may not speak with words, but his face and eyes speak volumes.  If you’d just stop and speak to him and then look (really look) into those eyes, I promise that you will get a response that will assuredly warm your heart and put a smile on your face.  There is a person inside that silent body who has a profound awareness of all that surrounds him.  Take the risk to get to know Jack.  He is so worth it.

Happy Birthday Jack.  We love you to the moon and back.