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! 

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)

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.

HAPPY FRIDAY FRIENDS! 

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,

Mavik

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

Eric,

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! 

From,

Eli

___________________________

My "Star Student"

Have a great week y'all!

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!

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.

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?)

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!

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.

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! 

Happy 12th Birthday Jack!

As I sit at my computer poised to share my thoughts on this, Jack’s 12^th 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.

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.

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.

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.

Remembering

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.  

Now She Can Rest

(Circa 2008)

For those who don't follow me on Facebook - my mom died Monday afternoon.  Sadly, I didn't make it home in time to see her.  She fought the good fight, she finished the race, she kept the faith, and now she can rest in eternal peace.

For those who are local and who knew my mom, the information regarding her services is as follows:

Rosary - Wednesday 10/20/2010   6:00pm
Whitney and Murphy Funeral Home 

Funeral Mass - Thursday 10/21/2010  9:30am
St. Mary's Basilica
231 N. 3rd Street
Phoenix, AZ

Graveside service following Mass at Holy Redeemer Cemetery
23015 N. Cave Creek Road
Phoenix, AZ

Recap

We are half way home after an eventful week in St. Louis.  This year's trip didn't go as smoothly as the last one, but all in all, not a bad visit.  To recap:

Cardiology: Echo and EKG showed no problems.  Due to Jack's low heart rate when sleeping (low 40s), they did a 24 hour holter monitor. Of course, because it was a stressful week for Jack, his heart rate didn't dip in the 40s like it typically does.  I don't expect the holter monitor to reveal any "bad" news.  I was told, if everything looks good, I won't be hearing from them.

ENT: Ears were cleaned out and bronch showed a good airway.  No granulation tissue or erosion issues.  We are changing Jack's trach to a Bivona flexTend with a different flange and switching from TTS to an air cuff (this will make no sense to my non-trachy friends).  I'm not sure if we are upsizing or not.  The trach nurse was going to talk with the ENT regarding the results of the bronch and then decide whether Jack needs a bigger trach. I'm thinking he doesn't.

Neurology: We really don't get any "news" at these visits.  Jack's issues are obvious. Contractures are Jack's enemy right now.  We can do range of motion and stretching, but there really is no way to prevent contractures from happening.  The biggest concern I have is the jaw contractures because it will be an issue should Jack need any work done on his teeth. Essentially, Jack won't be able to have any work done on his teeth because you can't open his mouth wide enough to get in there.  After our "medical" visit with Jack's neurologist, we went to lunch with her and got to have a social visit.  Jack's neurologist is a great doctor and a good friend.

Orthopaedic: See prior post.  Not sure what to do regarding the broken screw.  I'm going to make an appointment with Jack's local ortho and get his opinion.  I suspect he'll say the same thing as the St. Louis ortho - if it's not hurting Jack, there is nothing to worry about.  It's hard not to worry about what I see in that x-ray!  As for how or when the screw broke - I really don't know.  Jack had an x-ray taken back in March by his local ortho and the screw wasn't broken then. So, it happened sometime within the last seven months.

Ophthalmology:  This appointment is the one causing us trouble.  Because Jack had congenital cataracts, he is at risk for glaucoma.  After doing the EUA, Jack's ophthalmologist told us that the pressures in Jack's eyes have been consistently rising the last six years.  He said he always draws a picture of what he sees when he does an EUA and, while the pressures aren't dangerously high, the changes he's seen in his pictures over time has him concerned.  The risk with high pressures is blindness.  Jack doesn't need to add blindness to his list of ailments.  So, the ophthalmologist wants to see Jack back in 9-12 months.  Ugh! He gave us drops we have to put in Jack's eyes everyday and then he'll do another EUA when we come back. The treatment for the high pressures is another eye surgery.  Because Jack's ophthalmologist has been following Jack since he was 13 months old and because he has been doing the EUAs and documenting the changes in Jack's eyes, I really don't feel like this is something that can be handled locally.  And, at the end of the day, as much as I hate the drive to St. Louis, I have confidence in the doctors in St. Louis and I don't have the same confidence in the doctors in Phoenix.  I wish I did because it would make life so much easier, but I just don't.

Eric saw the ophthalmologist too and he got good news - his eyes are improving and his new prescription isn't as strong. Yeah!

Vent Issue:  Apria gave me a hard time because I didn't let them know two weeks in advance that I was traveling.  They claim that if they knew I was traveling to St. Louis, they would have had a plan in place ahead of time in the event of equipment failure.  I highly doubt it. I told the Apria rep that there was no way they were going to place blame on me because they had to scramble to get me a replacement vent. I couldn't believe the hassle it was to get a replacement vent.  Apria is a national company and they should have more than one backup vent in the entire state.  Seriously people, buy more vents!  They made us drive to Illinois to pick-up the vent - which was b.s.  They should have delivered the vent to us - we are the customer.

Visiting with Friends:  As always, we had a great time visiting with our St. Louis friends.  We stayed with friends we knew from Phoenix.  We lived in the same apartment complex when we were both young and childless. They moved to St. Louis before we did and have always been there for us over the years. We also had fun visiting with Jason, Jenny and their boys, Ben and Alex.  Eric especially enjoyed playing with boys who like Lego as much as he does.  Eric also spent the night with one of Jack's former nurses who has a little boy the same age, who likewise loves Legos.  I think Eric had a good time in St. Louis.

My Mom:  While we were in St. Louis, we learned that my mom's brain tumor is back and she is deteriorating really fast.  She is now in a hospice facility and doesn't have too many days left with us.  She's had a difficult and painful road following her initial diagnosis of a GBM in July 2007 and her body is tired.  Your prayers and good thoughts for my mom and my family are appreciated.

That's the recap and update from here.  Tomorrow will be another long day, but at least at the end of it, we will be home sweet home!

The Source

I think I discovered the source of Jack's distress the last few days.  I was wracking my brain trying to figure out why Jack was completely "checked out" (in a way I had never seen him before) when he was in his wheelchair, but once he got home and out of his chair, he was fine.  It occurred to me that Jack is on a different ventilator when he is out and about in his wheelchair.  So today, I changed out the circuits on the home vent (the one hooked to the humidifier) and used it as his travel vent and he had a much better day today.  Clearly, there is a problem with our travel vent.  I called Apria and told them they needed to get the vent changed out here in St. Louis before we get back on the road.  There was some grumbling about the fact that because I have one working vent, why do I need the other vent exchanged right now.  I reminded them that I PAY for TWO VENTS and they will damn sure provide me with two working vents at all times.  I didn't make them bring out a new vent tonight, but it had better get here in the morning!

Jack saw his orthopaedist today and we learned that one of the largest screws inserted into his bones when he had spinal fusion surgery has broken off.  It's one of the anchor screws that goes into his left pelvis. The ortho says that it shouldn't be a problem and shouldn't cause Jack any pain.  I'm not entirely convinced.  Here is the x-ray - it makes me sick to my stomach just to look at it :(

obvious broken screw on your right. 

Despite the broken screw, Jack was in a much happier mood today, so I was able to get some pictures of the boys.

Nothing better than starting your day off at Starbucks. Sadly, Jack only gets to experience the atmosphere, not the taste of Starbucks (but he doesn't seem to mind!)

Waiting for our next appointment. 

And no better way to end your day than outside on the deck enjoying the beautiful St. Louis Fall weather with a couple of these

Jack has a bronch/EUA tomorrow and thankfully he doesn't have to be to the hospital until 1:45pm.  I am so sleeping in tomorrow!

Thanks for checking in and for all your well wishes.

An Update

Sorry I haven't been very good about updating our St. Louis visit.  It's been a rough week so far - at least for Jack.  I'm not sure what it going on, but he's been very sleepy, uncomfortable and crying on and off most of the week. I feel like something is wrong, but I don't have a clue what it is.  He is most miserable when he is in his wheelchair - where he has been spending a majority of his time lately.  It's very hard to see him hurting and not know why.  I'm not looking forward to tomorrow because it's going to be another long day and I can't take another day like today.

Jack saw his neurologist today and she forced convinced me to get the flu shot for Jack.  I am totally against flu shots - I don't get them for any of my kids.  But, Jack's neurologist can be very convincing and, the fact that he could get it right then - during her clinic - I decided to go ahead and let them do it. She tried to convince me to get one too, but I declined :)

I haven't gotten any pictures of Jack this week because he has been miserable.  But I did snap these pictures of just two of the many things I love about St. Louis Children's Hospital.

finally, a place that understands that vans with lifts need more space!

I've rarely waited more than 30 minutes, but nice to know that I don't have to!

Wish us luck tomorrow - Jack really needs to have a good day.

Thanks for checking in.

Safe and Sound

We arrived safe and sound in St. Louis.

I forgot how tough this drive is.  Eric did great except for about the last two hours of day two. He had had enough and was just wanting to get out of the car. He so desperately wants to fly home.

The getting Jack in and out of the car is getting tougher with each passing year.  He, obviously, can't ride in his wheelchair for the whole trip, so we put one of the captain's chairs back in the van and lifting Jack in and out of that chair is hard on one's back, to say the least.  Jack did well for the most part, but the transitions from car to hotel room and back to car were hard on him.  He was wiped out tonight and feel asleep before 10pm, which is very unusual for him.

While I really love all our St. Louis docs and I know that the trip is totally worth all the work, it makes me mad when I think of the lengths we have to go through to get Jack the quality care he deserves.

Anyway, after a good night's sleep, I'm sure I'll have more energy and be ready to tackle all the appointments and procedures scheduled this week and I am looking forward to spending time with friends.

Just a few pics from our time on the road: