Saturday, December 26, 2009
Wednesday, December 23, 2009
Tuesday, December 22, 2009
Sunday, December 20, 2009
Friday, December 18, 2009
Monday, December 14, 2009
We got our real tree up this weekend and finished decorating the inside of the house for Christmas! (we are skipping the outside decorations this year).
This weekend we'll be decorating cookies with the little kids. I'm not sure I'll get the older kids here to have another cookie decorating contest like we had last year. Regardless, it will be lots of fun (and lots of work).
Sunday, December 13, 2009
Wednesday, December 09, 2009
The wave of good health we've been riding came splashing down (nothing serious enough to constitute "crashing down"). The stomach flu (not H1N1) hit our house this weekend. Eric got it first and then I got it. I get sick about once every three years, so I was due. It was only a 36 hour bug and I was "hit" the minute I walked in the door from work on Monday (thankfully I didn't get sick at work). I'm feeling much better today. The only bummer was that Mark was out of town, so I was flying solo with Jack and Eric, which made for a miserable Monday night/Tuesday. Mark was in Minnesota visiting his mom for her 90th birthday. Mark is the youngest of six and I am the second oldest of six. So, it's not that he's so much older than me, his mom is just 20 years older than my mom! Mark got back home tonight and it's nice to have my helper back :)
The countdown to Christmas is upon us. I'm one of those people who waits until the week before Christmas to go shopping. My plan this Christmas is "less is more". An easy plan to implement with most my kids. I can think of one, however, who will give us grief. Then again, he gives us grief no matter what.
I'm still trying to decide if I going to send out Christmas cards. My Christmas card has always been a picture of my kids. I think last year was the first year since Hilary was born that I didn't send out cards with a picture. This year, I can't even get motivated to send out cards ... picture or no picture. Every year it gets harder because of Jack .... not really something that's easy to explain and not something most people would begin to understand.
But, I really love getting all your Christmas cards and seeing pictures of your families. Jenny -- you were my first Christmas card of the year! Karen L. --- LOVED your card! (very creative)
Thanks for checking in. Have a fun weekend and stay warm all my Midwest and East Coast friends.
Thursday, December 03, 2009
Go to start the van and .... dead battery. Damn. I yell for Mark and ask him to hurry and jump the battery. He hooks up the jumper cables, I turn the key and ..... nothing. Friggin' nothing. The battery is d.e.a.d. Double damn.
I call my friend and tell her we won't be there. Unload Jack from the car and decide if he can't go to the Christmas concert, he can at least go for a walk around the block to look at Christmas lights. So we go for a walk. We come home, I get Jack out of his chair and back into bed. Then I grab a handful of chocolate hershey kisses and a beer and have my pity party.
Just another one of life's little disappointments.
In addition to life's latest disappointment, I am also suffering the consequences of years of lifting fifty plus pounds of dead weight (aka: Jack). I've been experiencing lower back/buttock/leg pain for several months now, but the pain has now escalated to the point that I can hardly tolerate sitting down for any length of time - which makes driving unbearable. The pain is only on one side (my right side). I have such an aversion to doctors that I haven't seen anyone about it yet, but I think I might have to soon because it's almost becoming dangerous for me to drive with all the seating position changes I have to make (while driving) just to help ease the pain. I don't have time to see doctors or go to physical therapy. Seriously, I don't!
On the upside, I arrived home to a package from my dear friend Carrie with the "UP" dvd for Jack and a Starbuck's card for me. Thanks Carrie .... your timing was perfect.
Life is still GOOD. 'Tis the season and we WILL enjoy it .... we will!
Sunday, November 29, 2009
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!
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.
The many different types of vegetation in one place was remarkable
Hiking along the trail
my absolute favorite. He looks so sweet! (and he really can be on occasion)
Have a great week y'all!
Saturday, November 28, 2009
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.
Thursday, November 26, 2009
Wednesday, November 25, 2009
Eric shared his Thanksgiving letter with us today. I couldn't make this stuff up if I tried:
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.
P.S. I am thankful for God, the land, food and most importantly, my family.
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!
Sunday, November 22, 2009
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, November 20, 2009
Tuesday, November 17, 2009
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 :)
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.
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.
Thursday, November 12, 2009
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.
Monday, November 09, 2009
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.
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.