Thursday, April 25, 2013

Yielding (A Reminder)

(Yielding is a well written essay that hits very close to home for me.  I shared this piece on my blog years ago, but it's a good read no matter now many times you read it and it's something I need to be reminded of often.) 


Looking at what might be ours if we surrender to the fact of our child’s disability and its impact on our life, looking around at the roles others in a similar position seem to occupy, we might immediately protest: “Hey wait a minute.  I don’t want to be exceptional, special, an advocate, political, a pioneer, a teacher, an expert on disability, brave, anguished, stigmatized, toughened, changed, holy.”

To surrender means to yield to the power of another; it carries strong connotations of defeat and ignominy. But to surrender also means to give up resistance.  When we cling to our self-will we are in the ludicrous position of putting ourselves in charge of things that are out of our control.  On the other hand, when we give up our will, when we give up resisting something we can’t change anyway, we open ourselves to a new set of choices.  Actually, we never abandon our ability to will and to choose.  We only shed the will we are presently exerting, because it no longer fits the circumstances of our life.  Like a molting lobster, we give up the too-small will and grow a new set of intentions that fit.

Having given up our will that our child will walk, or see, or go to college or continue the family name, having embraced the new choices and undertaken new actions, we may discover that what we are doing is, in fact, exceptional or pioneering.  We may find that our new, bigger shell is that of an advocate or an expert.

Wednesday, April 24, 2013


Last year, our plans included a couple of week long family vacations. What wasn't in the plans when we scheduled these trips was the additional 30+ days of work I'd miss due to hospital admissions for Jack. Given the events of last year, I've been hesitant to make any vacation plans this year. However, the guys I work for made it clear that I was to take vacation time and not worry about how much time I was off last year.  Needless to say, they didn't have to twist my arm to get me to comply.  To date, I've only taken a few days off - limiting my vacations to long weekends.  

We've now made it almost to the end of April without a hospital admission or any significant issues with Jack.  I don't really get why Jack is doing so well at the moment given he's dealing with the same issue he was dealing with this time last year.  The only difference now is that he is on a couple of new meds and we've increased his water intake significantly - which, apparently, are working to keep the pain he experienced last year at bay.

Because Jack is doing so well, I took a leap of faith this week and booked a bunch of flights to several different events taking place later this year.  I sure hope I didn't just jinx myself!

I plan to attend the Cure CMD family conference that will be held at the NIH in July.  I'm excited to meet the CMD families who live on the East Coast. I'm also going to take advantage of being so close to a couple of my trach-mom friends.  If things go as planned (Ha!), I hope to finally meet my friend Christy!  Christy lives about 100 miles from the NIH - which is nothing compared to how many miles apart we are now.  The only potential hiccup in our plans is that Christy's daughter, Harlie, will be having major jaw surgery at Boston Children's a few weeks before I'll be out there and it's hard to know how long she'll be inpatient following surgery. But, the way I see it (as I see most things in life these days), is, if its meant to be, it will happen.

The kids (sans Jack) and I plan to travel to New Jersey for my niece's wedding in October.  I also have plans to hike the Grand Canyon in May and I'm doing the Disney half in September.  I have a few other trips on my wish list, but haven't booked those yet.  My schedule is full.  It feels good.  To feel like I can actually make plans beyond next week is such a feeling of freedom.  You have no idea (well, some of you do) what it means to just be able to make plans, let alone actually carry them out, when you have a child that requires the level of care that Jack does.  There is always an element of fear - fear that the best laid plans will come crashing down around me at any given moment. But, I'm trying to not allow myself to be held hostage by all the "what ifs" and to just go for it. 

Right now - at this moment, life is good.  I'm taking it and I'm running with it for as long as I can.  At least that's the plan. 


Sunday, April 14, 2013

Shared Perspective

I'm someone who likes to read articles in medical journals on a variety of different topics. Sometimes I'm looking for articles that are specific to Jack's disease or issue at hand, but mostly I enjoy reading articles that deal with the issues of parenting a chronically ill, medically fragile, disabled child.  I'm always intrigued by studies of kids like Jack and parents like me. I like to see how my experiences line up with the experiences of those similarly situated.  

Recently, I came across a PubMed article that I wanted to read, titled Experiencing the pediatric intensive care unit: perspective from parents of children with severe antecedent disabilities.  Because I could only get the abstract on PubMed, I emailed the physician who authored the article and asked if he could send me the full article. Within fifteen minutes of sending the email, I received a response from this physician via his iPhone that said he was currently out of town for work, but he would send me a PDF in the next day or so.  As promised, he sent me a copy of the article a couple of days later.  Impressive, eh?  

I read the article and it was spot on from my perspective as well.  What was remarkable to me was how some of what parents shared in this study mirrored what I shared in my "Dear Future Physician" letter. Definitely, a shared parent perspective.  It's heartwarming to me that the medical profession even does studies like this - that they care enough about how parents feel to want to ask the questions and make changes based on what they learn.

Here is a link to the ARTICLE if you are interested in reading it.

Segueing from the PICU experience to the hospital experience in general, for those not on Facebook - St. Louis Children's Hospital has been part of a six-part docu-series called "The Frontline for Hope" that "takes you behind hospital doors to share inspiring stories of the doctors, nurses, patients and families" at SLCH. The series follows the journeys of several different patients and their families.  It's a remarkable series that is aired locally in St. Louis, but the 20-minute episodes (sans commercials) are available online the day after the show airs.  As strange as it sounds, watching the series really makes me miss St. Louis Children's Hospital.  Being at the place that has cared for Jack most of his life and where I spent so much time the first year of his life, gives me such a sense of comfort.  Every time I walk through the doors of St. Louis Children's Hospital I feel like I'm "home". I'm at a place where the doctors, nurses and staff are the very best, where they know my child and where they know me.  Becoming attached to a hospital isn't something most people experience (or ever want to experience), but those of you with chronically ill children completely understand where I'm coming from.  It truly makes me sad that we've made the decision to not make any more trips back to SLCH with Jack.

In any event - if you are interested, you can watch the episodes HERE.

And, just because I'm feeling nostalgic, here are a few pictures of Jack taken during his five month PICU stay at St. Louis Children's - where decisions were made that sent us on this journey that is beyond anything we expected, but which has enriched our lives beyond measure.

I think Jack was the only kid in the PICU who was vented via an ET tube and was not sedated. At the time, we didn't realize that the reason he never tried to pull his ET tube out was because he didn't have the strength to do it (the wrist tie-downs weren't necessary, but they didn't realize that at the time either).

The day he was trached 

(if you only knew how long it took me to make that decision - one of the hardest decisions of my life)

Monday, April 08, 2013

All Is Well

Sorry for the break in blog posts - there's not really much to post about.  Life is calm and boring and all is well. 

For my non-Facebook friends -
picture from a good day (which there have been quite a few of lately)

Thanks for checking in.