Friday, January 30, 2009

A Cruisin' . . .

I am not.

I should be leaving for Fort Lauderdale today to catch the Caribbean cruise that sails on Saturday. For a multitude of reasons (that everyone is telling me are really just excuses), I decided not to go.

This is one decision that I think I screwed up. I should have gone, but it’s too late now.

I am so bummed . . . and mad at myself.

C’est la vie.

Wednesday, January 28, 2009

Eric Funny

I was sitting at my desk yesterday afternoon when an email pops up on my BlackBerry from Eric's teacher. I was almost afraid to open it, thinking that whatever it's about, it can't be good news.

The email:

Eric said "can you ask my parents in an email if I can eat with Garrett tonight? Here is his house #xxx-xxxx. and Ms. K, Garrett said it has to be today."


My response:

"you can let Eric know that tonight won't work because his mom has a hair appointment and won't be home until late."

So, my kid now has his teacher acting as his personal assistant setting up his play dates on the side!

I'm so in trouble here.

Tuesday, January 27, 2009

Jack's Story

Jack's story is now up on the Cure CMD website. Although, there's probably not much in his story that most of you haven't already read somewhere along the way. It is a pretty cool website though (if you happen to have a kid with congenital muscular dystrophy).

On a completely different note ... as if I don't already spend enough time on the computer - I've now been sucked into Facebook. Mary made it very clear to me that I'm addicted and spend more time on Facebook than she does.

I need therapy.

Sunday, January 25, 2009

I Tried

Back in early December I heard that the Broadway production of the Lion King was coming to town. I thought . . . what a great opportunity to do something fun together as a family. It seemed like something everyone would enjoy. So Santa brought us tickets to the Lion King. Everyone was very excited and today was the day to see the show and spend some quality family time together.

We managed to arrive early, find front row parking and we were graciously escorted to our awesome seats -- Row 2. The view was incredible and we could practically touch the cast members we were so close. The lights go down, the show starts ... and the crying begins! Yes, Jack cried through the ENTIRE show. As you know, when you cry, you produce snot. When you have a kid who doesn't swallow and a kid who is crying .... oh, and a kid with a tube in his neck that snot likes to accumulate in . . . well you can just imagine what I spent most the show doing.

Yes, it was such a pleasant experience (not).

I tried. I really, really tried. I really wanted to believe that tonight was going to be a great night, enjoyed by all. Some quality family time!

Well, at least everyone else enjoyed the show.

Next time, Jack stays home. He'll be much happier and I might actually get to enjoy the evening out.

A picture before the show, when Jack still had his composure


Can I just add ... everyone is now in bed sleeping and as I'm walking through the house picking up stuff, trying to make a path that people can walk through in the morning, straightening up the bathrooms ....

I wonder ...

are we moms the Only people who know how to put a new roll of toilet paper on the friggin roller?

Wednesday, January 21, 2009

Special Request

I would like to make a special request of the parents of medically fragile children who read this blog. The website for The Willow Tree Foundation will be getting a face lift and a new look soon. On the current website there is a tab for "Stories", where several parents (including myself) have shared "a day in the life". I want to expand this section and add more "day in the life" stories. Just this week, I received a message from someone who can help get monies from a major corporation into the hands of the Foundation, saying that she was "deeply moved" by the stories on the website. Our lives - our stories, do touch people and do make a difference. I have big plans for the Foundation, but big plans require big money.

To my sorority sisters - if you find a few free minutes (okay, so you'll probably need more than a few minutes) in your otherwise full day, I will be forever grateful if you would take the time to write about a day in your life -- from whatever perspective you choose and however you want to share it. You can email* it to me as a Word document.

Also, anyone with grant writing experience willing to help me, please email me as well.


Thanks much!


Sunday, January 18, 2009

Just Because . . .

He's so darn cute!

(and I felt like playing around with Photoshop)

Thank you all for your comments to my last post. It's humbling to know that what I write strikes a chord with many of you.

Have a happy Monday!

Friday, January 16, 2009


From Changed by A Child by Barbara Gill:

The physical acts we perform for our children easily become tiresome chores. There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child’s need. We turn ourselves over to our child and what we are doing. We know the intimacy of placing food in another person’s mouth; of sitting by a child’s side in the dark, singing, so that he can sleep. We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong. Our tasks are our opportunities.


As the parent of a medically fragile and disabled child, I occupy many roles, some of which are suited to my personality and some of which are not. My personality is well suited to be Jack’s advocate. I crave knowledge, I enjoy researching and I am up for the challenge when it comes to dealing with the insurance company, the school district, the equipment company and the medical profession to ensure that Jack is getting the best care and the best services possible. I work well with words on paper.

As the parent of a child whose disease renders him essentially a quadriplegic, I also occupy the roles of respiratory therapist, nurse and personal care attendant. I find these roles much more difficult roles to fulfill. Anyone who knows me well can attest to the fact that I am not a touchy feely person, I’m not outwardly emotional and I’m not a nurturer. It’s just not in my makeup. Remember, I’m an ISTJ.

When our children are babies, we expect to provide for their every need. We expect to feed them, change their diaper, dress them, pick them up and physically move them from Point A to Point B. But we also welcome the freedom we regain when our children become independent and self sufficient. Diapering, feeding and dressing your child become demanding, relentless and exhausting tasks after ten years, especially when you add to the list the daily stoma care, dressing changes, trach tie changes, breathing treatments, and the never ending suctioning, suctioning and more suctioning. There are times when I just really dislike (okay, hate) doing all the medical stuff and personal care that Jack requires. However, when I find myself losing patience or rushing through these tiresome tasks, I make every effort to stop myself and reflect on the words found in the first paragraph of this entry – words that really hit home with me the first time I read them many years ago. I remind myself that my touch is Jack’s only opportunity to feel the world around him. He cannot reach out and touch me, he must wait for me to reach out and touch him. If I’m feeling impatient, rushed and bothered with the care I’m providing to Jack, he will most certainly sense this in my touch. I remind myself that the tasks of changing his diaper, getting him dressed, adjusting and re-adjusting ventilator circuits and positioning his legs and arms as he settles in for the night are all opportunities for me to show Jack how much I love him. I force myself to slow down and carry out these tasks with a gentle touch and a soothing voice.

And while there will always be those times when I’m tired and I just want to get the task done (or not do it at all), I strive each day to seize these opportunities to touch Jack with love. After all, Jack will never read the words I write when advocating for him, but he will always feel my touch in those moments of providing for his physical needs.

Monday, January 12, 2009

What's That Smell?

My niece emailed me some pictures from their visit to the Zoo last week. First, you have to know that Eric is hyper-sensitive to all smells. These pictures were taken while they were in the petting zoo section of the Zoo. I don't know if you all will find this as funny as I did, but I was laughing so hard when I saw these pictures!

Thank God they got me out of that smelly place!

Sunday, January 11, 2009

Fabulous Sunday

Today was one of those "why we live here" days. The weather was Fabulous. There was no question that I had to put Jack in his chair and head out for a walk. He was so happy to get out of the house and I was happy to get in an hour walk. We stopped along the way for some pictures.

Have a Fabulous week my friends!

Quick Update

Just a quick update to let everyone know that Mary is doing better. She still hasn't passed any kidney stones, but at least the puking has stopped. She needs to drink more water and I've having to stay on her about that.

Another bit of interesting news, I received an email from Jack's neurologist on Friday letting me know that the first two genes they tested to sort out Jack both came back normal. The plan now is to test two other genes. It was also the first time I've heard the name for the specific type of congenital muscular dystrophy Jack has -- it's called "Dystroglycanopathy congenital muscular dystrophy" and apparently within the Dystroglycanopathy family, there is a wide variation in how a person is affected. I gave up a long time ago caring if we ever found the exact type (genetically) of muscular dystrophy Jack has. The first couple years of Jack's life, I researched everything I could get my hands on trying to find an answer for Jack that I could live with. Once I accepted that Jack did in fact have some form of muscular dystrophy (denial no longer being an option given Jack's physical limitations and ventilator dependency), as far as I was concerned finding an answer no longer mattered because there is no cure. However, Jack's neurologist gave me the link to a new website called Cure CMD and, while I don't imagine a cure for Jack during his lifetime, it is encouraging to see that there is a real interest in finding a cure for congenital muscular dystrophies.

I'll leave you with a picture from Eric's visit to the Zoo last week.

Wednesday, January 07, 2009

A Day

That started off with me finding Mary curled up asleep on the bathroom floor. Apparently she'd spent the entire night throwing up. Oh and, by the way mom . . . there is blood in my urine. Well, I guess that warrants a call to the pediatrician's office. It takes a lot for me to take my kids into the doctor and, for the most part I take a "this too shall pass, so suck it up" attitude. But, blood in the urine - that caught my attention. I first had to run Hilary to the audiologist where they ran some tests on her cochlear implant. The information from the tests was recorded and will be forwarded to Cochlear Corporation's engineers for interpretation. We won't know anything for a few weeks.

Next stop, pediatrician's office. The doctor suspected appendicitis, so off to the ER we went. Six hours and a CT scan later, we received the official diagnosis ---- kidney stones! I didn't even know that kids could get kidney stones. The stones are small enough to pass on their own, so Mary is loaded up with pain meds and she is supposed to be drinking lots of fluids. Problem is, she is still puking non-stop. She needs the fluids to help "flush" out the stones, but she can't keep anything down. Not a good thing and I have this real fear that we will end up back in the ER for dehydration.

And, because both Mary and Hilary missed school today, I decided to let Eric skip school and go to the Zoo with his cousin Bridget and her boyfriend Joe. What the heck, life is too short. What's one missed day of school when you have the opportunity to spend time with family (and visit the Insectatarium) right?

As for Jack . . . he is doing fabulous!

That's my day in a nutshell. Hope your day was a bit calmer.

In the ER

Home and sleeping (with pain meds on board)

My Rx. There's nothing like a beer and tater tots at the end of a long day ;-)

Sunday, January 04, 2009

Riding the Rail

Phoenix just completed the construction of its first light rail system, so we decided to take it for a ride this evening. I know for my East Coast friends, the train is no big deal, but we Phoenicians are easily entertained! A little photojournalism follows, mostly for my family -- but hopefully you all will enjoy the pictures as well.

Buying our tickets

Riding from the East Valley to downtown Phoenix

My sister Maureen who just moved back home after living in New Jersey for five years - and who took the train into New York City every day for work, passed on the light rail ride, but met up with us at the restaurant

My niece Kelsey and her friend Lauren who is visiting
from New Jersey

Studying the kids menu

See no evil, speak no evil, hear no evil (doubt it!)

Waiting to catch the light rail back home. Hilary is yelling at me because I'm standing on the tracks taking the picture and she's freaking out that I might get hit by the train!

Waiting in the rain

Goofy kid on the ride home

Have a great week!