Building Guardrails

Taken at Dun Aengus on the Aran Islands, in County Galway, Ireland

Something happened today that really jarred me.  Now, before I tell you more, I must emphasize two points: 

• First, Claire is fine.
• Second, I don't want to over-dramatize today's events.  There's a difference between what actually happened and how it made me feel.  My blog post is about the latter.

So, here's what happened:  As I was leaving for work, Claire had a seizure and stopped breathing, causing her to turn blue.  Now, Claire has seizures every day, but never ones that cause her to turn blue.  It scared me.  A lot.

I watched helplessly as the color drained from her face.  I tried to think through what I should do:  Should I call 9-1-1?  Give her Diastat? (A "rescue medication" that stops seizures quickly.)  Perform CPR? 

Luckily, Claire's nanny was with us and suggested that I blow in her face.  I did, and at the same time began rubbing her sternum--a move I'm sure I picked up from the one episode of Grey's Anatomy I've watched.   It helped, but she continued to struggle to catch her breath.

When the seizure finally ended, I began to take stock of the situation.  I quickly realized just how wildly unprepared we were for this type of situation--both in terms of knowledge and resources as well as from an emotional standpoint.

Neither Brad nor I knows CPR.  (Though we both took a course while Claire was in the NICU, we haven't had to use that knowledge in over two years, and I don't think I've retained much, if any, of it.)

We have no equipment in the house to address a situation where Claire stops breathing.  No ambubag., no oxygen, nothing.  (And why would we?)

And most significantly, the situation highlighted for both of us just how fragile Claire is.  We both have known for a long time that Claire's health is more precarious than that of a typical child.  I have often reminded myself that there's a greater chance that she'll lead a short life as opposed to a long one. 

I am fortunate (or as fortunate as one can be) to know a number of parents who have lost their children, and their grief, admirably shared, has taught me to treasure every second with Claire, even the difficult ones, like when she is teething. 

But as much as I may recognize the fragility of Claire's life in my mind, today's events demonstrated that I haven't fully prepared my heart for the possibility of losing Claire.  I don't know if anyone can ever prepare for such a situation.

Several years ago--long before Claire came into our lives--Brad and I took a trip to Ireland.  One of the highlights was a visit to the Aran Islands, off the coast of Galway.  There's a fort on the Aran Islands called Dun Aengus, and for the heck of it, Brad and I cycled to the top of the island to see the fort. 

It sits at the edge of a cliff that must drop at least 100 meters into the ocean.  Even in 2007, when we were there, there were no guardrails.  Tourists could walk right up to the edge and look straight down at the swirling sea below. 

I remember getting about 10 feet from the edge before I began to feel fear and discomfort stirring inside of me.  It was a windy day, and I was afraid the next gust of wind would blow me right over.  Doubtless, people had fallen over the edge before.  And, as I watched others shuffle closer, I knew I had no desire to go any further.  I was fine with the view fom where I stood. 

Today, I was reminded of our trip to Dun Aengus and of the fear I felt as I tried to inch closer to the edge of the cliff.  After watching Claire turn blue, I felt as though I had been pushed closer to the edge of the cliff than I ever wanted to go.

I also realized that I can't just sit and let that fear consume me.  I must use the knowledge I have gained from this situation to build guardrails and make the edge of the cliff a safer place.

I have calls into Claire's neurologist and her pediatrician to determine what to do if Claire has another seizure like the one today.  I spent the evening researching CPR courses and am going to be signing the both of us up for one really soon. 

And, although you can never really prepare yourself emotionally for losing your child, both Brad and I have had open conversations about that possibility. 

Our guardrails are under construction, but I'm glad they are being built.