Christmas in the Jungle

It's been a (somewhat) relaxing and very enjoyable four day weekend. I retired the Fall decorations in Jack's room and replaced them with a whole lot of Christmas. I added more lights this year and his room looks really cool - especially at night with the lights off (except for the Christmas lights). Jack loves it!

The icicle lights are very cool, although you can't really tell in this picture. I need to get some pictures at night for you to really appreciate the effect

Eric and I got up early this morning and headed out on a road trip to the Boyce Thompson Arboretum - located about an hour East of where we live.  It was nice mom and Eric time.

Eric has the posing for pictures down pat.  He kept stopping and telling me to take his picture :)

The many different types of vegetation in one place was remarkable

Hiking along the trail

AND,
my absolute favorite.  He looks so sweet! (and he really can be on occasion)

Have a great week y'all!

The Boy Who Was Going To Run Away

After getting in trouble this morning, Eric decided he was going to run away from home.  He packed a grocery bag with everything he needed, hung it on his sword and out the door he went.

Needless to say, he didn't make it very far before he realized home wasn't such a bad place.

A Good Time Was Had By All

I am thankful for cooking bags ... a perfect turkey!

I am thankful for cousins

I am thankful for my little comedian

I am thankful for our family patriarch

I am thankful for him for many reasons

I am thankful for family and friends

Happy Thanksgiving

Eric shared his Thanksgiving letter with us today.  I couldn't make this stuff up if I tried:

Dear Family,


I love you.  First of all, I can't believe Mary is only 16 and has a job! For dad, why doesn't Hilery have her drivers license yet? She's 18 for petes sake!  Okay, I'm getting a little carried away here.  But anyway I love you all!  By the way, Dad I'm surprised how strange you act.  But, I like you anyway.  Does the dog still not like me? Well, this is for the dog [insert picture of person sticking out tongue].  Sorry. I don't think that is appropriate.  I am thankful for how hilarious my family is even if the dog doesn't like me.


Sincerely,
Eric


P.S. I am thankful for God, the land, food and most importantly, my family.

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We certainly never want for a good laugh around here with Eric.  I'm not sure if there's any significance to the fact that he failed to mention me and Jack by name.  Maybe that's a good thing :)

This is my fourth Thanksgiving in blogdom.  Wow! I never imagined or intended to blog this many years.  A heartfelt "thanks" to all of my readers who have been following along all these years.  Wishing each and every one of you a Thanksgiving filled with love and laughter.

P.S. If you plan to order one of The Willow Tree Foundation necklaces or keychains as a Christmas gift (and I'd sure love it if you did), please get your orders in soon because I have to order them from the designer, I don't have a supply on hand.  Thanks!

Relaxing Weekend

It was a fun and relaxing weekend.  Hilary made it home just fine.  She apparently didn't miss us that much because she's spent most of her weekend where she always spends it .... in her room! But, she has been nice enough to hang out and play Wii with Eric.  (Those two have a love/hate relationship.)

I saw a fantastic movie yesterday - Blind Side.  The only movies I like to see are ones that are uplifting and have happy endings and Blind Side fit the bill to a tee. The best part, it's based on a true story.  Definitely, two thumbs up in my opinion.

I'm looking forward to a short work week and spending time with family on Thanksgiving.  Hope you all have a relaxing and fun Thanksgiving week.

Friday's Food For Thought

So damn easy to say that life’s so hard

Everybody’s got their share of battle scars

As for me I’d like to thank my lucky stars that

I’m alive, and well

.     .     .

And today you know that’s good enough for me

Breathin' in and out's a blessing can’t you see

Today is the first day of the rest of my life

Now I’m alive, and well

Yeah I’m alive, and well

("I'm Alive" by Kenny Chesney)

(click to see YouTube video) 

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Happy Friday!

Not So Different

The sweet smile and sparkling eyes are still there .... you only have to look to see them.

Not so different eight years later

Thanks for all your nice comments to my last post.  Thanks for understanding, for "getting it" and for "seeing" Jack for who he is. ♥

Jack is just so happy these days and is staying so incredibly healthy.  I'm amazed at how long his run of good health has been . . . it's been years!  (another advantage of keeping Jack in his cocoon :)

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Hilary comes home Friday for Thanksgiving break.  RIT is on a quarter schedule, so she has finals all this week.  I've sent her a few texts this week, but haven't heard a word from her.  I'm hoping it's because she is too busy studying.  I'm nervous for her to make her first flight home by herself.  I know it's not that big of a deal to catch an airplane, but Hilary has a tendency to not pay attention to the world around her and that's not a good thing when you are traveling alone.  All I can do is try and prepare her for the real world, she'll have to learn to survive out there on her own.  I'm (fairly) certain she'll do just fine.

************

Here's another Eric funny.  He thought it would be fun to give his dad a report card.

Eric has a reputation for his "hurry up and get it done with as little effort as possible" attitude at school. Looks like he was projecting his feedback onto his dad!  Eric also joined the running club at his school.  He's very excited about it and I'm excited it's something he can do without the excuse of "I don't know how to do it".  (Eric is a perfectionist like his mom and, as a result, he is reluctant to try and/or stick with new things.)  Running is the perfect sport for Eric and hopefully it will help burn off some of the pent-up energy that has him bouncing off the walls most days.

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Mary is busy with school and working her new job at Target. We are all staying healthy and life really is good! Thanks for checking in.

Follow-up No. 1

There are several of the "themes" discussed in the article that I posted about in my last blog entry that are worthy of follow-up as they relate specifically to my life and Jack's life.  This follow-up post relates to the theme titled "Conflicting Social Values" and the belief that your child's life is devalued.  My experiences deal more with people not acknowledging Jack as a human being despite the fact that he is right there in the room with them.  This happens quite often when dealing with medical professionals.  I've left more doctors in this City because of the way they have treated Jack.  I've also noticed a huge difference in the way Jack was treated as a baby versus how he is treated now that he is older.  In particular, by those who cared for him when he was a baby in the PICU and when he returned to the same PICU for his spinal fusion surgery seven years later.

Jack was an adorable baby.  He was the "star" of the PICU during the many months he lived there and not only did the doctors and nurses adore Jack, the parents of other kids in the PICU would stop by Jack's bed on a daily basis just to get a glimpse of his smile.

Seriously, could you resist this face?

And, I can assure you his smile was just as bright with an ET tube shoved down his throat!  Jack never lacked for acknowledgment or attention during his early days in the PICU.  The day Jack bailed from the PICU, many notes of love were left for him in a journal that I asked everyone to sign.  Here are just a few of the messages written by the doctors, nurses and RTs who cared for Jack:

"Jack, I look forward to coming to work so I can see you! Seeing you always keeps my life in the proper perspective because even after all you have been through ... you always have that perfect little smile ready to cheer me up! You are just the most wonderful baby boy ...."

"Jack, I will always remember coming into work and looking forward to seeing your absolutely adorable smiling face and your big bright eyes."

"Sweet, Sweet Jack, this old place is going to be a little less bright without your sunshine smile that you were so generous with.  It's has been a wonderful blessing to have known you and your mama.  You are definitely a little angel sent from God to remind us why we do what we do."

"Jack, you are a beautiful baby and I love to see you smile! I am so happy to see you go home, although I'll miss our kisses! You are so sweet and I couldn't forget you or your happy disposition.  Stay happy and smiling forever."


"Jack, what are we going to do without your smiling face? You are so precious and I will miss you terribly.  I'm sad for us, but happy for you."

and they go on and on .....

Then Jack grew up and his disease stole some of his "brightness" and tempered his smile.  He's still the same sweet Jack, but so many people don't see it -- won't see it -- because they can't look beyond the tubes and the paralyzed body to the little boy who lives in there.

When Jack returned to that same PICU, where many of the same people who wrote those notes still work, he didn't get quite the same reception.  The care he received was excellent, but it didn't go beyond that.  No more "hi sweet Jack, how are you doing?" These same people walked past his room and waved "hi" to me, but didn't come in the room to see Jack.  They too couldn't see past what his disease had done to his body ... and his smile.  It broke my heart.

Shortly after that PICU stay, I had a discussion with one of Jack's former doctors regarding this change in attitude towards Jack.  Here is what he shared:

"I totally believe you can see a difference in attitude of nurses caring for him now compared to when he was a baby, but frankly, with chronically ill children - communicative or not - as they get older they get less "cute".  Heck, it's why so many people go into pediatrics in the first place.  Sick adults are just not as much fun as sick children. And, whether it's inherent in our programming or not, the younger the child, the "cuter" they are.  So, perceptive people like you with children with chronic conditions perceive the difference in attitude. But, it does not mean that people care less -- it's just different."

Incidentally, this is what I love about this doctor  - he is as forthright with me as I am with him (and we've had some great discussions as a result).  He listens to what I have to say, but he still tells it like it is - always in a supportive way. He acknowledged what I already knew and I respect him for that.  But, it still bites and it makes me sad for Jack.

And mad too.

And it's why we stay away from hospitals and doctors and people in general.  It's why we keep Jack safely cocooned at home surrounded by people who can see the sweet little boy underneath his paralyzed shell. It's where Jack is treated like a human being who can see and hear and as someone who has feelings and an opinion.  We stay secluded at home because it's where people aren't afraid to talk to Jack even if he can't talk back.   It may not be the "right" thing to do, but it's what we do.

Daily Living With Distress and Enrichment

This weekend, I was looking through some of the papers and articles I’ve accumulated over the last eleven years.  I came across an article that I shared on the Tracheostomy.com message board back before I started blogging.   I think it is worth sharing again with those of you who follow my blog who also "live the life" or who are close to those of us who do.

The article discusses the results of a study of families of children who are supported by a ventilator or positive-pressure device at home.  The results were not surprising and, from my perspective, were spot on.  I also think much of what this study revealed is true for parents of any medically fragile or chronically ill child, not just parents of children who are ventilator dependent.

The study explored the moral dimension of family experience through detailed accounts of life with a ventilator dependent child and examined the moral phenomena inherent in (1) the individual experiences of the ventilator-assisted child, siblings and parents and (2) the everyday family life as a whole.

The study identified six principal themes:

1.  Confronting parental responsibility: parental responsibility was described as stressful and sometimes overwhelming. Parents needed to devote extraordinary care and attention to their children’s needs. They struggled with the significant emotional strain, physical and psychological dependence of the child, impact on family relationships, living with the daily threat of death, and feeling that there was “no free choice” in the matter: they could not have chosen to let their child die.

2.  Seeking normality: all of the families devoted significant efforts toward normalizing their experiences. They created common routines so that their lives could resemble those of “normal” families. These efforts seemed motivated by a fundamental striving for a stable family and home life.  This “striving for stability” was sometimes undermined by limitations in family finances, family cohesion and unpredictability of the child’s condition.

3.  Conflicting social values: families were offended by the reactions that they faced in their everyday community. They believe that the child’s life is devalued, frequently referred to as a life not worth maintaining.  They felt like strangers in their own communities, sometimes needing to seclude themselves within their homes. 

4.  Living in isolation: families reported a deep sense of isolation. In light of the complex medical needs of these children, neither the extended families nor the medical system could support the families’ respite needs.

5.  What about the voice of the child? The children in this study (patients and siblings) were generally silent when asked to talk about their experience.  Some children described their ventilators as good things.  They helped them breathe and feel better.  Some siblings expressed resentment toward the increased attention that their ventilated sibling was receiving.

6.  Questioning the moral order: most families questioned the “moral order” of their lives.  They contemplated how “good things” and “bad things” are determined in their world.  Parents described their life as a very unfair situation, yet there was nothing they could do about it.  Finally, an overarching phenomenon that best characterizes these families’ experiences was identified: daily living with distress and enrichment.  Virtually every aspect of the lives of these families was highly complicated and frequently overwhelming.  An immediate interpretation of these findings is that families should be fully informed of the demands and hardships that would await them, encouraging parents perhaps to decide otherwise.  This would be but a partial reading of the findings, because despite the enormous difficulties described by these families, they also reported deep enrichments and rewarding experiences that they could not imagine living without.  Life with a child who requires assisted ventilation at home involves living every day with a complex tension between the distresses and the enrichments that arise out of this experience.  This irreconcilability is particularly stressful for these families.   Having their child permanently institutionalized or disconnected from ventilation (and life) would eliminate both the distresses and the enrichments.  These options are outside of the realm of what these families could live with.

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I found it very interesting to read that a lot of the stress we feel in our daily life is attributable to the inability to reconcile the tension between the distresses and the enrichments that arise out of this experience.  It makes a lot of sense, but I never really thought about it that way until I read the article. I don't know that we can ever truly reconcile the hardships and the joys of this experience. For "survival"  purposes we have to try and keep focused on the enrichments our child brings into our life (and there are many).  But, it's also important to recognize and accept (without guilt) that somedays we won't be able to think past how tired, sad and lonely we are and that is okay too.  It's a delicate balance (and utterly exhausting) to find a place of inner peace given our daily struggle to reconcile the distresses and enrichments of this life.

The article discussing this study was published in the January 2006 issue of Pediatrics (the official journal of the American Academy of Pediatrics).  If anyone wants a copy of the article email me and I'll send it to you.  I have it saved on my computer at work, so just know if you want a copy it will be coming from my work email.

Happy Birthday Pics

Happy Birthday To You

Happy Birthday To You

Happy Birthday Dear Jack

Happy Birthday 

To You!

And Many More . . .

Thank you all for your sweet birthday wishes.

Love,

Jack

Happy Birthday Jack

Eleven years ago today, Jack and I began our journey down a road on which I spent many years desperately searching for a U-Turn.  I never found that U-Turn, but I discovered so much more along the way: courage, hope, patience, perseverance, acceptance and abounding friendships.  What a privilege it is to be Jack's mom.  Happy Birthday Buddy!

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Email post is below.

Prelude to the Birthday

Jack will celebrate his 11th birthday on Wednesday. As I usually do around Jack's birthday, I find myself thinking about where we started, where we've been and where we are today.  As many of you know, through the years I've written down my thoughts on Jack's birthday and have shared them with family and friends via email and on this blog.  As I ponder the last eleven years, I find myself thinking about how little Jack has changed, and how much I have changed over the years.  In terms of progress, Jack has made none in eleven years.  Yet, he remains the same easy going, content, sweet little boy today that he was the day he left the PICU at the age of seven months.  I, on the other hand, have morphed from a maniac taskmaster whose sole focus was to make this all go away into someone who is at peace with Jack's diagnosis.  More significantly, I'm learning to take the experiences and knowledge gained from living this very crappy hand that Jack and I (and the rest of our family) have been dealt and directing it in a positive light to try and make a small difference in this world.  Jack has changed me profoundly and together we are working to leave his faint footprint in the sands of time.

In thinking about how much I've changed over the last eleven years, I decided to pull out my stack of emails that I've exchanged with Jack's doctors since June 1999. There are literally hundreds of emails and oh, how they tell my story.  I'm somewhat appalled at the tone I took with Jack's doctors in the beginning - I sure was bossy!  I'm surprised they even stuck with me all these years given the attitude I had in the beginning.  On Jack's birthday, I will share with you some of the emails (mostly mine and a few by Jack's docs) that have been written over the last eleven years.  I think they do a good job of reflecting how my attitude and my focus changes and how much I "lighten up" with each passing year.  It was really hard for me to pick which emails to share.  I could have shared many more, but it would have made for a very, very long post (as opposed to only a very long post).  I'm not sure if anyone will even find the emails remotely interesting, but I'm doing this for myself more than anything.  Someday, I hope to write a book that is a compilation of all the emails exchanged between myself and Jack's doctors . . . when the time is right (and with their permission, of course).

See you back here Wednesday.