Saturday, January 29, 2011

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!

Wednesday, January 26, 2011

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 :) 


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.

Sunday, January 23, 2011

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?

Monday, January 17, 2011

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. 

Friday, January 14, 2011

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.


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.

Sunday, January 09, 2011

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.

Monday, January 03, 2011

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 pretty much turned around, gave me the finger, 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.]