Sunday, September 25, 2011

Family Weekend

This weekend was Family Weekend at Northern Arizona University.  What used to be called "Parent's Weekend", is now for the entire family.  Mark, Eric and I went up to Flagstaff for the weekend to see Mary. Hilary didn't want to come  - she quite enjoyed having the house to herself for a few days, and Jack spent the weekend at Ryan House.  I'm still not 100% comfortable leaving Jack at Ryan House - this is only the second time he has been there for the weekend without us staying with him.  Jack's nurses checked in on him for us and when we arrived to pick him up this afternoon, he was doing great.  He's very tired tonight though and I can't get a read from him as to whether he's okay with staying at Ryan House, or whether he is mad at us for leaving him there. It's certainly not an easy thing to do, but I will admit, it's really nice to get away for the weekend and have a break from all of Jack's care.

It was good to see Mary and it seems that college life is treating her well.  Mary has decided that she wants to be a doctor.  I think she's read my "Dear Future Physician" letter, so she knows what's expected of her! :)  She has signed up to be a volunteer in the emergency room at the hospital in Flagstaff - which is a Level I trauma center.  It will give her the opportunity to see some "good" stuff and find out if she has the stomach to be a doctor.  I too spent my weekends volunteering in the emergency room of a Level I trauma center during college.  Things didn't quite go according to plan for me, as I ended up on the wrong side of the white coat.  I'm optimistic that things will work out much better for Mary!


Ready to cheer on the football team

NAU isn't a powerhouse football team, but it was still a fun game to watch

Mary and her cousin, Kelsey at the game 

Eric isn't a big football fan  - he'd rather read his Lego Ideas book

The girls found the game about as interesting as Eric and left early 

Today we walked around downtown Flagstaff - which has a lot of really neat little shops.  It reminds me a lot of Estes Park, Colorado - but, not quite as upscale.

Old Route 66 runs through downtown

There is also a lot of wall art on the buildings 


As a follow-up to my last post, the other part of the email from the media relations person at SLCH said this:

It would be a privilege to highlight Jack on our Facebook page, as well as on the main hospital website. Will you be in St. Louis soon for a follow-up appointment?  If so, we'd love to meet you in person and interview you and Jack for a profile. 

So, yes SLCH wants to share our story. The problem is, when I wrote the email, I truly wasn't "fishing" for our story to be told.  I was using Jack as an example of the many children like him who SLCH cares for.  There are many local children who have the same "profile" as Jack that they can feature on their Facebook page and website.  While I encouraged her to profile a local child, I also let her know that I would very much like for her to meet Jack in person and I let her know when we'd be in town.  I haven't heard back from her, so I'm wondering if the fact that I didn't jump at the opportunity to be the featured story, made her lose interest. I guess I should have just said "yes" and left it at that. Oh well ... regardless, I made my point and it was heard.  What SLCH does from here, I don't know.  Que Sera, Sera.

Speaking of St. Louis, we leave weekend after next and I'm not even close to being psychologically ready for the trip. It is such a long and brutal trip.  Mostly for Jack.  But, we do what we have to do because I'm stubborn as hell and I won't let anyone else but the St. Louis docs manage Jack's care.  There will no doubt come the day when we will no longer make the trip - for any number of reasons.  But, until then .... onward!

Have a great week my friends.

Monday, September 19, 2011

The Silent Child

One of the statements that Anne made in her video that really hit home with me was this:

As a person with a disability, you are often ignored in society.  If you are able to speak, you can at least have a come back, defend yourself.  

I would also add that if you are able to speak - you are noticed.  It's the disabled or sick child who can talk that is chosen to be the "poster child". Their stories are shared on television, websites and Facebook pages - stories of children who are fighting cancer, who have incurable diseases, who have received new hearts and lungs, or who are pioneers in the use of new medical technology. I recognize that "feel good" stories with cute and articulate kids are both good for publicity and heartwarming for people to hear. They are valid and important stories that should be shared.  But, what about the cognitively impaired child who cannot talk?  Their faces and smiles need to be shown and their stories need to be shared as well. The lack of recognition of the "silent child" really gets to me sometimes.  While I completely understand why it's difficult for people to connect with a child like Jack, it's still hurtful that he is often ignored.

I "like" and follow St. Louis Children's Hospital on Facebook.  Stories of the children that SLCH cares for are shared on a daily basis on its Facebook page.  Several months ago, I sent an email to SLCH's media relations person offering my perspective for her consideration.  Here is a portion of what I wrote:

I'd like to challenge you to also recognize the stories of children like my son.  A child who isn't a "poster child" because of the disease that has ravaged his body and stolen his ability to communicate.  A child who will never be cured despite the top notch care provided by SLCH.  I'd like to see someone write an article, share a story - even a picture - of the child who isn't necessarily a "success" story, but who represents another population of patients that SLCH provides care for - the silent, chronically ill, developmentally delayed child.  A child who is equally as beautiful, and whose story is equally worth sharing.  While there is no question that the physicians, nurses and staff at SLCH recognize the value of our children's lives as evidenced by the compassionate care they provide, I would love to see this recognition extend beyond the four walls of the examination room.  Every once in a while it would be nice to see a story about a child like mine.  A story about how the care provided by SLCH - while it may not cure his disease or save his life - it does enhance his quality of life, for however long that may be.  It's not a sensational story, but it's ours.  And, I believe, it's your story too.  

I received a very nice response, that provided in part:

I couldn't agree more.  Caring for children like Jack is a critical part of what we do, and provides tremendous fulfillment and inspiration to the nurses, doctors and therapists who follow these brave heroes every day. 

As the parent of a "silent child", I feel strongly that I need to raise awareness whenever I can.  It's important for people to know that just because a child can't talk, doesn't mean he has nothing to "say".

Monday, September 12, 2011

A Video: Life With CMD

The Chairwoman and founder of Cure CMD, Anne Rutkowski, recently participated in a video with her daughter where she talks about life with a child with CMD.  Her daughter is about the same age as Jack, has the same subtype of CMD as Jack and, like Jack, her daughter has cognitive impairments that affect her ability to communicate. Anne made several points in this video that really resonate with me - which I'll share more about in my next post.  Anne is an emergency room doctor and one of the brightest people I know. When she talks congenital muscular dystrophy - she uses big words and talks way over my head!  The thing I liked about this video is that it's Anne the mom, not the doctor, the advocate or the trailblazer that she is.  The video is almost 7 minutes long, but, hopefully some of you will take the time to watch it.

Saturday, September 10, 2011

9-11 Memorial Prayer

Remembering those who lost their lives on this 10th anniversary of 9/11.

The following was written by my husband, Mark.

(click to enlarge)

Thursday, September 08, 2011


I realize it's been awhile since I've posted any Eric-isms.  There is never a shortage of Eric-isms, I just haven't been very good at writing them down.  Here are a couple of recent ones:

"Hilary is the only person I know who doesn't think I'm awesome."  

"In my opinion, the scariest thing in the world is an angry mom."  


Thanks for all your thoughtful comments on the loss of Rylie.  Hilary already put the dates and times for adoption at Petsmart up on the refrigerator. However, I'm not ready to jump right in just yet - at least not until we get back from our trip to St. Louis.  I'd rather not get another dog at all, but I don't think I'm going to win on this one.

Now that "Fall" is here, so are the school-born sicknesses. Eric has his first case of strep throat and Mary texted me this week with "Mom, I'm already sick."  We've been so lucky with Jack because he hasn't been sick for over a year (knocking on wood).  I'll be curious to see if he gets sick once the teacher and therapists start coming out to the house and bring all the school germs with them.  Speaking of school, we have Jack's IEP in place, but don't yet have all the people to provide the services.  Looks like it won't be until at least mid-October (after Fall break) before we have a team put together.  Good thing my expectations were low. 

Hope you all have a fabulous weekend. I'd just like for the temps to get below 100.  It's Pumpkin Spice Latte time at Starbucks, but I just can't get into the Fall coffees when it's 110 degrees outside! The weather is definitely something I'm looking forward to in St. Louis (along with seeing all our awesome friends).


Saturday, September 03, 2011

The Thing I Don't Like About Having a Dog ....

 .... is that they die.

It's no secret that I'm not an animal person, but I did think our dog Rylie was a pretty sweet dog.  If I had to have a dog, she was the perfect one for me. She had a quiet, gentle disposition.

Sadly, she died on Friday night, at home.  Mark was out of town until today, so I had to handle the whole thing and it was rather traumatic.  Long story short - I ended up taking her to the vet, a bunch of tests were run and it was determined that she was dehydrated and something was wrong with her liver. However, there wasn't anything this particular vet could do until next week - when we could have some additional testing done. She sent us home after pushing fluids into Rylie and told us to come back the next day for more fluids (this vet didn't have overnight services).  Rylie died two hours after we brought her home.  Ugh!  The one good thing is that it truly was a very peaceful passing and the kids were with her.  I seriously don't ever want to go through that again. Thank God for my friends Anne Marie and Paul - they are "animal people" (they have lots of animals) and they helped me get Rylie to the vet and back home.  Thankfully, they were with us when she died, or I would have freaked out.  We suspect Rylie had been sick for awhile and it caught up with her all at once and she crashed fast. There really wasn't anything the vet could do based on the condition Rylie was in at the time we took her in.

Lots of tears are being shed around here this weekend.  Naturally, there is talk of the next dog we are going to get. But, I don't think I can do this again - and, it will happen again. It's the nature of having pets.

She was Hilary's best friend,

Eric's buddy,

and Jack's protector

Eric slept with her collar last night :(

and, Hilary drew this picture 

So much for an enjoyable three-day weekend.