Checking In

It's been a while.  Not much going on ....

Except ...

The flu is back. Underneath that blanket is a sick Eric.  It's been a cyclic flu season.  Seems Eric gets better for a week or so and then he gets sick again.  Eric is not happy that his sick times have coincided with Christmas break and weekends.  So far, he's not missed much school.  

Woody has a broken leg and ....

 . . . so does Jack! 

(casted Woody courtesy of Jack's nurse, Kristi)

As I've mentioned in the past, Jack's bones are very fragile and it doesn't take much to cause a break.  We took Jack directly to his orthopedic doc instead of going through the ER and, initially, I wasn't happy when he didn't cast him.  He was just going to send us home without anything until I mentioned that Jack needed some support when he is transferred from his bed to chair.  He gave us an ill-fitting splint, but it seems to be doing the job.  I emailed Jack's neurologist and asked her if it was common to not cast breaks for non-weight bearing kids.  She reassured me that fractures are common in kids like Jack and that it's typical to only splint - not cast.  Jack is on the mend and isn't in any pain (provided we are very careful with his leg).  Unfortunately, breaks are a big concern with Jack and, no doubt, there will be more in the future.  

We closed out this weekend watching a great Super Bowl game. I'm not necessarily a fan of the Packers, but I'm definitely not a fan of the Steelers, so I was happy with the outcome. :)  

a birds-eye view of everyone watching the game

 

(my dad had his hand on Jack the entire time he was sitting next to him -- very sweet)

I'm heading to Columbus, Ohio next weekend to visit my friend Anne.  I'm not so sure about the timing, Columbus in February = snow.  Hopefully there won't be any weather delays.  

That's the update from here. Thanks for checking in!

________________________________

This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy.

(George Bernard Shaw)

You've Got A Friend In Me

Kristi got Jack a Woody doll for Christmas.  He totally LOVES this thing. Who knew?  I can tell Jack loves his new friend because when he sees Woody, he gets the biggest smile.  It just never occurred to me that Jack would ever be attached to a doll.  I thought it would be appropriate if Jack and his friend had something in common, so Woody got a trach.  Jack, again, loves it!

Eric ... not so much so.  His comment when he saw the new and improved Woody ~

"Ewwww, I don't like neck injuries. Take that thing off, it creeps me out!"


Hopefully, he's doesn't feel the same way about his brother!

That Time of Year Again

The running club at Eric's school is off and "running".  Today was Eric's first race of the season (they only have three or four races total, so it's not much of a season).  He did well, kept a good pace and finished with a positive attitude!  There were hundreds of kids participating in the race and at least that many parents cheering their kids on, so it was hard to get pictures of Eric, but I was able to snap a few with my telephoto lens. The weather was perfect for race day - sunny and in the mid-70s (that's for all my friends suffering with snow right now :) 

pre-race 

and he is off ...

about half way to the finish line 

Hi-ya mom

 after crossing the finish line

enough already mom!

team shirt

Thanks for checking in.  All is well at the Ranch .... wishing the same for all of you.

An Unburdener

The other day, I pulled off my bookshelf one of the many "parents of kids with special needs" books that I purchased years ago but never read.  The forward to the book was written by a pediatric geneticist.  He talked about how the role he has come to play for many of his parents is that of an "Unburdener" - someone who is there for the parent "to talk to, or, more accurately, to talk at, someone who won't criticize, or answer back or feel guilty."

I like that term -- an "Unburdener".  I understand exactly what he means and how important it is as the parent of a child with a chronic medical condition that can't be fixed, to have someone in your life who is willing to act as an Unburdener.  I've been fortunate to have several of Jack's doctors act as an Unburdener and I can say, without a doubt, that my sanity the first few years of this journey was saved because of these doctors.  I needed to know that there were doctors out there who truly cared about Jack and this crappy hand we had been dealt.  I talked "at" these doctors relentlessly. They were - and continue to be -  accessible, patient, compassionate and responsive, without judgment or the need to come up with an answer.  They simply listen.  Twelve years into this journey, my need to be "unburdened" isn't nearly as great as it was in the beginning of this journey.  However, there are still those times when I just need to talk "at" someone.

After reading about the physician's role as an Unburdener, I sent an email to the one doctor of Jack's who has been my primary Unburdener over the years, to thank him for all he's done and to remind him to never underestimate the profound difference he makes in the lives of parents like myself who he so unselfishly serves as an Unburdener.  His response says it all:

You are proof positive that physicians should not be afraid to allow families to contact them by email or phone - it is such a small 'sacrifice' compared to what the families are going through.  You have never ever been a 'burden' and it's only been a delight to play a small part in your journey.

We need more Unburdeners - and doctors -- like him in the world.

Who has been an Unburdener for you?

Snow Day

The kids very much enjoyed their day in the snow.  Mary took a private snowboard lesson, which gave her the opportunity to learn how to use a snowboard (which she has no experience with), as well as got her to the front of the lift line (which was very long).  She had a blast, but was exhausted at the end of her two hour lesson.  Eric wasn't quite as adventurous and was happy to just play in the snow and throw snowballs! The weather was perfect - it was sunny and not too cold. 

We are so thankful for Ryan House and its wonderful staff who gave us this opportunity to get away for the weekend.  Jack did well, but I think he was happy to see the familiar faces of both his nurses who stopped by to visit!

Renting the gear

all geared up and ready to go

playing in the snow

all smiles after a couple of hours on the slopes

let the snowball fight begin

I love this shot! 

Unfortunately, the weekend did not end on a good note.  This is how we found our car Sunday morning as we were getting ready to leave

Needless to say, no note was left and there were no security cameras to catch the creep who hit my car and ran.  Fortunately, the damage is all cosmetic and the car is still drivable.  As of now, the fender is being held up by duct tape.  I'm not in a hurry to get the car fixed because I'm not in a hurry to spend the thousand dollar deductible!  Grrrr!

Back to the grind tomorrow.  Have a great rest of the week my friends. 

Taking the Leap

This weekend I'm finally taking the Leap and will deliver Jack to the wonderful staff at Ryan House and I will NOT be staying with him.  Can I do this?  It's so incredibly hard just to think about it, let alone do it.  The fact is, when I stay with Jack at Ryan House, I'm not giving myself any respite.  The issue is not my confidence in the staff at Ryan House, it's my inability to "let go".  But, I must do this.  I've been given an incredible resource and opportunity that not too many parents of medically fragile children get and I have to take advantage of it.

Right?

The rest of us are heading to Flagstaff to enjoy a weekend in the pines and snow, and a little sledding and snowboarding.  Personally, my butt will be parked in the lodge by the fireplace with a drink in my hand! Although, I may venture out for a picture or two.

It's a little strange to be getting away as a family of four.

Both of Jack's nurses plan to stop by Ryan House to check on Jack, which makes me feel better.  I know everything will be fine, but it's nice to know that there are people in town who can help out if needed.

Wish me luck .....

and wishing all of you a wonderful weekend.

The Good Times

Lest I gave the impression that being a SN parent "sucks" all the time, I thought I'd share some of the good times.  The wonderful doctors, nurses and therapists who have shared this journey, the amazing friendships I've made with my fellow trach moms and the good times celebrating birthdays and family.  There is much good, as I so clearly reminded myself in putting together this montage.

Thank you for all your supportive comments to my last post.  This is definitely a road that must be traveled together - with friends who truly understand.

Make an on-line slide show at www.OneTrueMedia.com

On Being a SN Parent

As the parent of two children with disabilities, like it or not – I am a member of the “parents of children with special needs” club.  Being the parent of a child with special needs is not a role that I embrace or a role that defines me.  There are many parents out there who are better suited to be parents of children with special needs. They accept their role, if not willingly, then certainly without resistance. They march forward with a positive attitude and the resolve to make a difference.  I admire and respect these parents - they are the champions of change. They gave us the ADA and the IDEA. They push and they get results – whether it be for their own child or for the disability community as a whole.

I’ll admit that I started this journey with great hopes of at least being a champion of change for my own children.  I fought the insurance company so my deaf daughter could have the newest technology implanted in her head.  I moved half way across the country so she could attend one of the best schools for the deaf.  I gave her the best I could and when she turned eighteen, she packed away the cochlear implant and tossed aside everything I worked so hard to give her – hearing and speech.  

I got another chance with Jack.  I worked with him, pushed him and wished him to walk, talk, eat and breathe on his own. I made sure he had the therapies and education he was entitled to.  I travel 1500 miles to give him the quality medical care he deserves.  Despite giving it my all, there has been no progress, no successes, no "inchstones" achieved.  In Jack’s case, his disease won’t allow it.

Perhaps I don’t embrace my role as the parent of a child with special needs because I suck at it.  I don’t say this in a “poor me, I’m a failure” kind of way.  I don’t think I’m a terrible parent, I’m just not a good special needs parent.  Or, perhaps I’m not a good special needs parent because I refuse to embrace it? 

Each of us deals with our role as a special needs parent the best we can.  I believe we are all champions of change – whether it be in making a difference in the lives of many or making a difference in the life of one.  And for some of us, it’s being a champion of change in ourselves as we strive to get up each day and give it all we’ve got despite the fatigue, grief, stress and resistance to embrace the role.   

Regardless, we are all CHAMPIONS.

[This post was inspired by today's post on the Hopeful Parents website.]

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 . . .

Cousins

More cousins

Sisters

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!)

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.

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!

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!