Tuesday, September 11, 2012

How We Are Doing

A woman came up to us while we were eating lunch today, pulled out a chair, and sat down to talk to us about Lucy.  She had noticed the feeding tube, and thought that Lucy might have had what a friend's baby had had.  We told her it was SMA, and she was surprised that Lucy was as old as she was.  She mentioned that the expected lifespan for Lucy's type was 6-8 months, which surprised me - we don't often run into people randomly who know anything about SMA.  I explained about Lucy's breathing treatments and BiPAP usage, and she thought that was great.  She then asked if we believed in Jesus, and we said yes.  She said she was glad, because then she could see Lucy in heaven someday.  I believe she was under the impression that we were just counting the days until Lucy passed.  So much has changed since her friend had her baby with whatever diagnosis it had, and we don't talk about that kind of stuff around Lucy, so I glossed over those statements.  Lucy's ears work just fine ;) 

Then she asked us how we were doing with it all.  That's a question that I don't often think about, so it kind of caught me off-guard.  I get the impression that people think that we are just putting on a brave face, but are just really crumbling and miserable on the inside.  It seems like even the most positive, the most spiritual of people look at us with their pity just barely masked.  I don't blame them; I'm sure I would react the same if I were in their shoes, not knowing our life.

That's the thing, though - that's what this is for us.  Our life.  After she walked away, I really thought about how I could honestly answer that question.  First of all, this diagnosis is almost three years old for us - which was something else that surprised her.  It's not new news.  And while certain aspects are still painful and frightening, those things are not what is at the forefront of our minds every day.  The closest way I could think of to say it is that it's not part of our lives; it is our lives.  It's not something I can choose to not be okay with.  It is an aspect of Lucy's being.  In my mind, it is the equivalent of her having a speech impediment, or a food allergy, or needing glasses (not to downplay its obviously being a very serious situation) - it's something we mold our lifestyle to accommodate.

Now, everyone deals with and feels about SMA in their own way, and there is no wrong way, this is just what I feel - at least, this is the best way I can think to put it.  As a guide to conversing with us, I'll put this out there - there is no need for pity, please don't assume that no matter what we say that we're barely holding it together, and - most importantly - don't repeat over and over how lucky we are to have our daughter here.  We know.  And she can hear you.


N Voss said...

Love the way you write!

CureSMA4Stella said...

Yes, Yes, Yes!!!! :) I'm going to make a business card to hand out so I don't have to go over details anymore in front of Stella.

jennifer G said...

After 3 years we stopped worrying about what could happen and what was happening. The fear is never too far away, but it isn't at the forefront. Now I worry about Jacob and how he is...not how his breathing is or when he is going to choke. And honestly I think my kids get to do more cool things because I want him to live life to the fullest and be happy. I am so glad you are in this place and I hope your words help other people know that it gets better, so much much better. After 6 years, I don't even think about how I am doing. Some days I am great and today I want to go to the gym...is that any different than a mother of all typical kids? My reason for not being able to go to the gym is probably different, but we still have the same needs.
You just love your beautiful girl!