Monday, June 28, 2010

A First

Tonight I captured a FIRST .... three of my children engaging in an activity TOGETHER!  This never happens because Hilary is a loner and typically does her own thing and because of the age difference between Eric and his sisters.  To most, this scene would be no big deal, but it truly is a first for me and listening to my kids laughing and having fun together is just so ........... cool!

If only Jack was in the picture holding a Wii remote, it would be the "perfect" first.

Sunday, June 27, 2010


I had a blog post drafted but then decided not to post it because it seemed too narcissistic. Then again, all blogging is narcissistic to some degree.  When I started this blog, it was never intended to be about me, it was started solely to keep people updated on Jack's spinal fusion surgery in 2006.  I kept it up after that because ... well, because people kept reading.  Occasionally, I'm "struck" with words about this journey with Jack that I feel are worth sharing - words I call "Blog Thoughts".  Writing is very therapeutic and cathartic for me and I write as much for myself as I do for those who read this blog.  However, it's been over a year since I've written a Blog Thought.  I'm wondering if maybe I've got nothing left to share.   Perhaps I've finally reached the point in this journey where I really am okay.  I'm not consumed with how different my life is or what I don't (and won't ever) have.  Granted, it's easy to be in this place of contentment when things are going smoothly with Jack (and nursing and insurance) and, I'm certainly not looking for any drama just to have something to blog about. The problem is: contentment = lack of blogging material.

I know who some of you are who read this blog because you leave comments.  I know how many hits a day this blog gets.  So, I also know that there are many who read this blog and never comment.  It does beg the question .... why do people read this blog?  It can't be because of my words of wisdom or profound thoughts because, lately, I've got none.  I'm not sure my family's everyday life is all that interesting either. So, you ask, what exactly is the point of this post?  I'm not sure I know, but hey ... at least I gave those of you who check in on us something to read! :-)

Seriously, my point is that this blog has morphed into something completely different than what it started out as and I'm not sure where I'm heading with it or for how long.  But, I will say (as I've said before) that I appreciate those who check in on us and continue to check in despite the long break between posts.  I appreciate those who take the time to leave a comment.  Mostly, I appreciate that when times do get tough, there are people out there who truly care.  That, I guess, is why I keep blogging.

Thanks for stopping by.


p.s. I'm open to suggestions if anyone has something they'd like to know about me, my family or if you have any ideas for a blog post.

Thursday, June 17, 2010

All Is Well On The Homefront

We are all well here at the Ranch.

An update on those recovering from surgery ...

Our dog Rylie is up and moving around much better.  She sits at the bottom of the stairs whining because she can't go up. We have a gate that blocks her way  -  and trips me about every other time I go up and down the stairs.  If I'm not careful, I'll end up breaking something and need surgery myself.  For a non-animal lover, I really do think our dog is really sweet. So sweet in fact, I actually let her lick my hand today.  It was gross, but I sucked it up and indulged her  :-) (sorry, I just can't do dog slobber.)

Mary got the half-casts off her feet and she is now in those lovely black boots.  She can now get around by walking on her heels in the boots and has graduated from the wheelchair to crutches.  Her stitches are still in until Monday. Mary has some great friends and cousins who have hung out with her at the house and kept her entertained.  Now that she can get around better, they have been carting her around town and gotten her out of the house.  I'm not sure when she will be able to drive because she can't drive with the boots on.

Here is a picture of Mary being serenaded by one of her friends.  What a nice guy!

Eric started his science camp this week and he loves it.  At first he thought it was going to be like school and he really wasn't interested in going. But, he's been having a blast. Yesterday, he dissected owl pellets.  Do you know what one finds in owl pellets?  Small bones! Very cool (if you are into those kinds of things.)  Next week is robot week at camp.  I can't wait to see what kind of robot Eric creates.

Hilary is enjoying hanging out doing a whole lot of nothing.  I'm already starting to book flights for her return to school in the Fall, Thanksgiving break and Christmas break.  I'm hyperventilating at the amount of money it costs to get this kid from Phoenix, Arizona to Rochester, New York. It's insane.  I remember when my kids were little and I couldn't wait for them to get out of daycare because I was going to save so much money.  Silly me.  Kids aren't cheap no matter what the age.

As for Jack ... oh, how I love this kid.  He demands so little and is always so happy and content.  Just give him a few cans of food a day, keep his airway clear and make sure the TV or iPod is on and he's a happy camper.  The simplicity of his life (his dependence on sophisticated machines to keep him alive aside) is refreshing in the otherwise manic life I live. Jack forces me to stop, rest, listen and soak in the moment.  I need him as much as he needs me.

I'm in the middle of reading two books.  The first one is "Finding Your Own North Star: claiming the life you were meant to live".  I'm still trying to figure out what I want to be when I grow up.  I just hope I can figure it out before it's too late to make a change.

The other book is "The Pursuit of Perfect" - the book I mentioned in a previous post.  This book discusses the difference between being a Perfectionist and being an Optimalist.  According to the author, the  differences between a Perfectionist and an Optimalist is that a Perfectionist rejects reality while the Optimalist accepts it.  The Perfectionist rejects failure, the Optimalist accepts it as a natural part of life and as an experience that is inextricably linked to success.  I am a born Perfectionist (as is Eric).  As the parent of two children with disabilities, it's difficult to ignore my reality.  Acceptance wasn't something that came easily or that happened immediately.  In fact, I rejected my reality for years.  However, with time, I've come to accept my reality because of my children and for the sake of my children.  As you may recall, I wrote about being a perfectionist in this post: "Perfection".

I really like this following quote about acceptance:

When we fully accept reality - the good and the bad, the pleasurable and the painful - we can create and spread affluence; when we accept rather than resist, we become a pipeline, a conduit, through which wisdom and goodness can flow.  

Thanks for checking in my wonderful friends!


For those wanting to know how my mom is doing -- she ended up back in the hospital for a week with a severe UTI and other GI issues that needed to get resolved. She was discharged on Wednesday and she is now in a different rehab facility that we hope will actually do some rehab. The last place she was at didn't make any effort to get her out of bed or rehab her.  The hope is that she can get to a point in her rehab at the current facility where she will qualify for placement at an acute rehab facility where she will get the intense rehab she needs.  It's been a very tough recovery from a broken leg and she's got a long way to go yet.  But, she's one tough lady and if anyone can get through this, it's her.

Thursday, June 10, 2010

Summer Days

Summer days ....

Are spent lying on the couch with your feet propped up, sipping gatorade and getting all the pain meds you want

where no amount of pain or grogginess can keep you from doing THIS all day long ....

staying up way past bedtime, hanging out with sibs and cousin playing Wii games and finally succumbing to sleep on the family room floor with no worries about having to get up early the next day 

ahhhh, the FUN days of summer.  (Although, Mary probably wouldn't call this week "fun" - but she's doing well.)

Wishing you all a fantastic Friday that carries through for a fabulous weekend.  Thanks for checking in!  

Tuesday, June 08, 2010

Eleven Years

Eleven years ago today, Jack was discharged from St. Louis Children's Hospital PICU after spending almost five months there looking for answers that were never found and trying everything to avoid the inevitable.  

Who knew what the next eleven years would bring.

Eleven years of:

> sleepless nights

> threading a suction catheter down my child's airway

> dumping cans of liquid food into my child through a hole in his stomach

> changing out a plastic tube inserted through a hole in my child's neck

> rinsing my child's snot out of a plastic canister

> troubleshooting a machine that breathes life's air into my child's lungs

> changing trach ties and g-tube dressings

> wrapping a pulse-ox probe around my child's fingers and toes

> listening to the rhythmic whooshing of the ventilator and the rumbling of the suction machine

>  monitoring oxygen saturations and heart rate

>  having nurses in my house and following someone else's orders regarding my child's care

> ordering medical supplies

> telephone calls to DME companies regarding wrong orders

> reading EOBs

> working my way through countless telephone prompts to get to an insurance company representative who talks to me like I'm an idiot

>  meetings with nursing agency reps, department of developmental disability reps and vent dependent program reps

> x-rays, orthotics, splints and wheelchairs

> coordinating medical appointments with work schedules

>  email communications with doctors

> amazing friendships with nurses and doctors who dared to cross the line

> profound friendships with the most amazing women who walk this walk along with me

> experiencing the love, care and concern of the many people who care for, care about and support families like mine

> dashed hopes

> new dreams

> appreciating the little things

>  discovering who I am

>  growing emotionally and spiritually

>  learning

>  standing my ground and

> loving more deeply than I ever thought possible


The last eleven years have been anything but easy and while I don't believe that things always happen for the best, I do believe that it's possible to make the best of things that happen (to quote Tal Ben-Shahar, author of "The Pursuit of Perfect: How to Stop Chasing Perfection and Start Living a Richer, Happier Life").  I can't imagine a life without Jack and all he has brought to me and those whose lives he touches.

The one thing that has saddened me the most over the last eleven years has been my perception of Jack's quality of life.  His disease has stolen so much from him and there is so much he cannot do.  I often wonder why Jack has to live this life. Yet, not too long ago I had an "AhHa" moment that gave me a whole new perspective on Jack's quality of life.  I was sitting with my mom in the nursing home shortly after she was transferred following surgery.  My mom was in an incredible amount of pain, unable to do anything for herself and unable to communicate anything about how she feels or what she needs.  (My mom has severe aphasia as a result of the surgery to remove a brain tumor three years ago).  Sitting there with my mom, I got to thinking about quality of life and then it hit me  . . .  Jack has a phenomenal quality of life.  He may not be able to move a muscle, is dependent on a machine for every breath and requires assistance with every aspect of his life -- but despite these limitations, Jack is engaged, he is not in pain and he finds joy in his life.  It was the "knock up side of the head" I needed to appreciate that Jack's life has purpose and that I am richly blessed to have him in my life.


I've shared these pictures before, but I'm going to share them again. Pictures from Jack's discharge day - June 8, 1999.  

sporting his new "homecoming hat" - a gift from Dr. Garcia

the obvious connection between Jack and a very special doctor
(Dr. Garcia)

snoozing on the ride home

Sunday, June 06, 2010

Another Great Weekend

We spent another great weekend at the Ryan House.  Eric is in nirvana there.   Jack ...  he's not sure yet.  He's happy, but unsure.  He looks at me with these eyes that say "hey, what's up?  I'm perfectly happy at my house, in my bed, watching my movies and having my nurses cater to me!"  He just needs practice  - which we intend to give him a lot of.  We are looking forward to our next visit.

My favorite place to hang out at the Ryan House:

The Sanctuary is incredibly quiet and peaceful and a great place to read and catch a short nap.

On Saturday night we went to an Arizona Diamondback's baseball game. We had to drag Eric away from the Ryan House to go to the game, as he was convinced that baseball is "so boring".

Does this look like a bored kid to you?

It was fun to get out for the evening with Eric and our friends, but I'm with Eric .... baseball is incredibly boring to watch (so much so that we left the game early!)

Our dog, Rylie had her surgery last week and she is slowly recovering.  She was quite pathetic the first few days. The thing wrapped around her waist is holding on a pain patch.  She's now had the patch and bandage removed and she has to take it easy (no running or stair climbing) for 12 weeks.

Mary has her surgery this week.  I borrowed a wheelchair from my friend, as Mary will be without the use of both feet for several days after surgery - she doesn't get her walking boots until next week.  At that, she has to walk on her heels because she can't bear weight on the front part of her foot for a good 4-6 weeks in order to give the hardware time to set in the bone (they are putting plates and screws in the bones of her pinkie toes).

Wishing you all a fabulous week! Thanks for checking in.