Sunday, December 26, 2010

Just Some Christmas Day Pics

Mark got hit with the flu Christmas Day.  That leaves me and Jack.   I realize Mark couldn't help getting sick, but could I just whine here for a minute?  I get a three day weekend, no nursing help, sick kids and a sick husband.  So much for my Christmas vacation.  It's back to work tomorrow and I'm tired.  *sigh*

C'est la vie.  

A few pictures from Christmas Day ....

A new DSi.

A new Wii game.

Love Eric's bed head :)

The aftermath ... not too bad.
The older they get, the fewer (yet, more expensive) gifts under the tree.

Grandpa sharing some words of wisdom (depending on who you ask).

Someone must be telling a good story . . .


More cousins


Conversation around the fire 

Happy boy!

Jack enjoying his Christmas gift -- wireless, surround sound headphones
He's loving them

I got a flip video camera for Christmas, much to Eric's dismay  (practicing his drums on a chux pad!)

Friday, December 24, 2010

Wishing You A Merry Christmas

Two more kids are down for the count  - Mary and Hilary.  The only one left standing (figuratively, of course) is Jack.  It doesn't appear that Mary and Hilary have been hit as hard as Eric, so that is good.  Hopefully they will be feeling better by tomorrow.  Fun times at our house this Christmas!

Wishing you all a Merry Christmas filled with the love and laughter of family.

Wednesday, December 22, 2010

Short Update

The little drummer boy is still sick.  This flu has really knocked him down.  I was a little worried yesterday about him being dehydrated and envisioned a trip to the ER for IV hydration if things didn't turn around soon.  Today, he drank a good amount of Gatorade and seems to be feeling a little better.  He should be back to par by the time the man in the red suit makes his appearance.  I got a call from Kristi on my way home from work this evening telling me that Jack didn't have such a great afternoon.  Here's hoping he isn't heading down the same road as Eric.  When I got home, Jack seemed fine, so hopefully whatever Kristi experienced was an isolated event.

Time will tell .....

My shopping is done, my last day of work for the week is tomorrow, and I'm ready to just relax and enjoy a three day weekend.  Well, I'm not sure there will be a lot of relaxing going on, but I'm looking forward to it nevertheless.

Thanks for checking in!

Sunday, December 19, 2010

Little Drummer Boy

Call us crazy, but we signed Eric up for drum lessons!  At his first lesson, he was very intrigued with all the different drums, asked a lot of questions and breezed his way through the first seven pages of drum music.  (The year of piano lessons really helped.)

Here is the little drummer boy showing off his sticks after his first lesson ...

Here is the little drummer boy today ....

sick with the flu.  It really wiped him out - he slept ALL day today! Here's hoping it doesn't spread through the house or it could make for a very unpleasant Christmas Day. 

"T" minus 6 days and I still have way too much Christmas shopping to do.  I'm done with the kids, but I still have Mark and people outside of the immediate family to buy for. I didn't get a darn thing done this weekend (what the hell was I thinking?)  I'm hoping by putting it off until the weekday evenings, the crowds might be lighter.  You think?  

Wishing you all a stress-free and healthy week topped off with a very, merry Christmas! 

Monday, December 13, 2010

It's Beginning to Look a Lot Like Christmas

The live Christmas tree is up and decorated ....

with a few of my favorite decorations ....

the family room is decked out with Christmas cheer

Christmas shopping is almost done; kids are in the final days of school before Christmas break and Hilary will be home on Friday.

All is as well as it can be ...

and this is for ME! 

(a poet I am NOT, but you get the idea)

And for YOU ~

The light of the Christmas star to you
The warmth of home and hearth to you
The cheer and good will of friends to you
The hope of a childlike heart to you
The joy of a thousand angels to you
The love of the Son and God's peace to you.
(Irish Christmas blessing)

Friday, December 10, 2010

Food for Thought Friday

An excerpt from The Pursuit of Perfect by Tal Ben-Shahar, Ph.D

[T]he four benefits of suffering: wisdom, resilience, compassion, and a deep respect for reality.

Wisdom emerges from the experience of suffering.  When things go well we rarely stop to ask questions about our lives and predicament.  A difficult situation, however, often forces us out of our mindless state, causing us to reflect on our experiences.  To be able to see deeply, to develop what King Solomon referred to as a wise heart, we must brave the eye of the storm.

Nietzsche, a wise man himself, famously remarked that what does not kill us, makes us stronger.  Suffering can make us more resilient, better able to endure hardships. Just as a muscle, in order to build up, must endure some pain, so our emotions must endure pain in order to strengthen.  Helen Keller, who in her lifetime knew much suffering, as well as joy, noted that "character cannot be developed in ease and quiet.  Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved."

Everybody hurts sometimes, and allowing ourselves to feel this universal emotion links us together in a web of compassion.  The dictionary defines compassion as a "deep awareness of the suffering of another coupled with the wish to relieve it," but the only way we can gain a deep awareness of the suffering of others is by having suffered ourselves.  A theoretical understanding of suffering is as meaningless as a theoretical description of the color blue to a blind person.  To know it, we need to experience it.

One of the most significant benefits of suffering is that it breeds a deep respect for reality, for what is.  While the experience of joy connects us to the realm of infinite possibilities, the experience of pain reminds us of our limitations.  When, despite all our efforts, we get hurt, we are humbled by constraints that we sometimes fail to notice when we are flying high.

A deep respect for reality implies an acceptance of what is - of our potential, our limitation and our humanity.  Recognizing that suffering is integral to our lives and that there are other benefits to pain, such as the cultivation of wisdom and compassion, we become more accepting of our suffering. And when we truly accept grief and sorrow as inevitable, we actually suffer less.


Sunday, December 05, 2010

Star Student

Last week, Eric was selected as the class "Star Student".  Each day during the week, there is a special activity revolving around the Star Student.  One of the activities is that all the kids in the class have to write a letter to the Star Student.  Eric brought home a folder with all his letters and it was hilarious to read them.

Most of the letters were a version of this:

Dear Eric,
You are a really cool and good kid.  You always listen to Mrs. K.  You are always looking at her and you get your work done right.  You are a really good builder. You can make up something with legos really quick.  You can probably make a robot with legos in a minute.  You are also a good artist. Our giant posturs were really cool and I liked yours the best.  Mrs. K picked you and I think you deserve it.
Your friend,

But, THIS one was the best - you gotta love this kid's honesty:

Congratulations on being star student.  Just to warn you I'm not good at staying on topic so, just warning you.  I like being funny and crazy too so I'm not one of those people who doesn't respect your silliness.  Ugh, I hate writing star student letters. Not that I hate you, but I hate these letters. Why are they called friendly letters? Do you have to be friendly in them or something. Oh, I am closing your letter now so bye! 


My "Star Student"

Have a great week y'all!

Thursday, December 02, 2010

Getting Into The Christmas Spirit

In an attempt to get into the Christmas spirit ... Jack and his friends and brother decorated the Christmas tree in Jack's room.  I still have a few more lights to put up in Jack's room and have another tree to put up in our family room, but it feels good to have at least started the process. 

A good time was had by all! 

The pictures below don't begin to do the tree justice.  This is actually taken with all the lights off in the room, but you can't tell.  Wish I knew how to take pictures in the dark to get the true effect of the tree.  

Oh well, use your imagination.  :)

This evening, we went to listen to our friend perform in a Christmas concert. Jack got all dressed up in his "Dapper Dan" sweater and really enjoyed getting out of the house.

Hanging out by the Christmas tree in the lobby of the hotel where the performance was held

Hope you all are getting into the Christmas spirit as well.  It's hard for me to get too excited about things this year, but I'm doing my best to put on my happy face and enjoy the season, while remembering the reason.  

Thanks for checking in!

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.

Sunday, October 31, 2010

Simple Gifts

I sure miss those days when my kids dressed up for Halloween as nice things ....  like pumpkins and Disney characters.  

Halloween had a sparse turnout here in the desert.  I'm beginning to think that trick-or-treating has become a thing of the past.  I could have skipped it all together, but I reminded myself that Eric is still a little kid and he is entitled to enjoy the things his sibs and cousins did when they were his age.  It really stinks to be one of the youngest cousins in the group, as Eric usually ends up trick-or-treating solo.  

I shared this picture on Facebook, but wanted to share it here too.  This is especially for my friend Stella  Julie!  (don't mind the kid in the background getting ready to attack me with his scythe!)

We enjoyed a quiet and relaxing weekend (if you consider getting up at 5:45am this morning and going on a two hour hike relaxing).  I was listening to Christmas music on my iPod (don't laugh) on my hike and when I got to the top of the mountain and sat down to rest, the song "Simple Gifts" started playing.  I closed my eyes and allowed myself to just hear and feel the words.  I felt myself relax for the first time in a long time.  The timing of the song was perfect and something I desperately needed to be reminded of.

Here is the version of the Simple Gifts that I was listening to (Alison Krauss and Yo-Yo Ma).

May you all have a week of peace and simplicity.

A special little boy is celebrating his 12th birthday this week.  More on that later.

Monday, October 25, 2010

I Finished

I finished the LA 1/2 marathon and I wasn't the last one across the finish line.  Yea!  I have to admit, I was a little worried as I was sitting on the shuttle bus that picked us up at the finish line of the race and drove us to the starting line.  It was a loooonnngg bus ride and I kept thinking .... holy crap, how far are we going to go because I have to walk back to where we started!  The first 10 miles weren't too bad.  After that, I just wanted to be done. I'm happy to announce that I raised over $1800 $1,900 for CureCMD.  Thanks to all who supported me.

And this, my friends ... is why I walked the race (love him!)

My cool medal. 

I also had the opportunity to hook up with one of Jack's former doctors who is now at Children's Hospital of Los Angeles (and who is featured heavily in the many emails I share).  I haven't seen him in over four years, so it was great to catch up with him too.  He also did the 1/2 marathon, but he ran it and finished hours ahead of me!

Between our trip to St. Louis, my mom's death and funeral and the marathon, it's been a whirlwind couple of weeks and I'm ready for some peace and calm.  Wish me luck with that, okay?


Some pictures from last week.

Toasting my mom with a little Tullamore Dew
(good stuff!)

Me and my sibs

Have a great week. Thanks for checking in.

Monday, October 18, 2010

Thank You

I just want to again say THANK YOU to all my wonderful friends for your kind words of support; for the emails, cards, flowers, food and, mostly, for just caring.  I think it's difficult for most people to understand the power of the support I get from my Internet friends.  They don't understand the need to search for and find a camaraderie with people over the Internet -- many of whom I've never met.  They don't understand  because, for the most part, they haven't had to look beyond their workplace, their church, their neighborhood or their child's school to find people they can relate to - people they have something in common with.  The same can't be said for me.

I'm very fortunate to have extended many of my online friendships to in-real-life friendships.  Regardless of whether I've had the privilege of meeting you in person or only online - the care, support and love I feel from my Internet friends is powerful and it is real.

To all my in-real-life, non-Internet friends, many of whom have been part of my life since long before the "Internet" became a household word - you are equally as special and I am equally as grateful for your love and support.

Thank you for caring about me and my family during this difficult time and thank you for taking the time to tell me so.

Friday, October 15, 2010


My Mom's Obituary 

Some family pictures from the past

(Circa 1967)

(Circa I haven't a clue ... 1970?)

(Circa 1975)

(2006 - yea, I know, that's a big leap in years.  All of us and our spouses)

(2009 - my parents' 50th Wedding Anniversary party)

Even though I knew this day would come, it all seems very surreal.  Next week, reality will hit hard when family comes into town and we have to get through the visitation, funeral mass and burial. 

Next week will be tough.

Thank you all so much for your love and support.