Monday, January 5, 2015

Lives Matter - on the matter of living

"There is nothing like staying at home for real comfort."  - Jane Austen

Winter is mostly that, for us.  Lucy is not immunocompromised - her immunity works the same as anyone else's.  It's her physical ability to cope with the symptoms that is the problem.  Someone who can't cough and can't swallow is going to have a very hard time with all the junk that comes with a cold or flu.  So we keep her home, and we take extra precautions to minimize the potential for germs to enter our home.  Not all SMA families do what we do, and that's fine.  What we do works for us, and we don't expect it to be what's right for everyone.

Lucy's first major respiratory event happened when she was 3.  She lost consciousness briefly due to lack of oxygen.  It happened because she had secretions in her throat, and a breeze hit her in the face, and she sucked in and choked.  Now, there are some kids with SMA who deal with major episodes daily; they desat and turn blue, and their parents or nurse manage to get them cleared, and moments later they're acting like it never happened, while their caregiver stands shaking. 

Lucy is not one of those kids.

These events stay with Lucy, and since she is nonverbal, we have to do our best to talk to her about them, answer questions we think she may have, and not scare her additionally by saying something that might not have even been on her radar.  Physically, she recovered quickly from the early ones.  The one she experienced this fall, though... it has left a lasting mark on her.  She panics easily, and hyperventilates when we try to do anything that she feels may compromise her airway.  

We realized early on that Lucy loves routine, and is not a big fan of travel, or change in her routine.  She enjoys relaxed, controlled environments.  Of course, that can also depend on her mood and energy - sometimes she likes boisterousness and surprises :)  Overall, though, unless we can tell she's in one of those moods, we keep it calm for her.  Lately, her idea of calm enough is not leaving her room, reading stories, playing with some of her toys, and watching lots of movies.

And we let her.  We've learned that pushing too hard only results in setbacks and mistrust.  Lucy knows Lucy.  She knows how she is feeling, what she is thinking, and, as she ages, what her capabilities and desires are.  We can only hope to guess correctly, for the time being.  And that's not enough anymore.  So as she grows, we have to let her take more charge, and make more decisions, in the path her life is taking.

So far, she has chosen mostly this.

And that's okay.  It's okay for her, and it's okay for us.  And I hope that other special needs parents who have children with the same proclivities understand that it's okay for them, too.  It doesn't mean that your child is not living life.  It does not mean your child is miserable, deprived, a vegetable, or whatever else the masses would have you believe, because they choose to spend their time at home, or even in bed.  It means they're an individual, and that life of derring-do and record breaking isn't one that they want for themselves.  And that's okay.

Checking out Christmas lights in the living room at 3am on 
a sleepless night - this was quite an adventure for Lucy! She 
liked it for the first 10 minutes, and then wanted to go back 
to her room... so we did :)

We want Lucy to want to learn, obviously, and to do projects and communicate effectively.  Primarily, though, we want her to do things if she ENJOYS them.  I want her life to be full in that it's full of things that make her happy - not because we're checking off boxes on society's list of what a person with a handicap must achieve to be of value.

Currently that means we're full of Frozen stuff ;)

I refuse to measure the fullness of another person's life by a set of standards put forth by someone who is not that person.  If Lucy wanted to zip line, or snowboard, or surf, or rock climb, we'd figure out a way for her to try those things.  She doesn't - at least not for now.  And while I do encourage her to try things that I believe she'll enjoy, based on past experiences with her, I have learned that she will like what she likes.  I can't make her into anyone else.  I can watch other SMA kids do activities that will blow your mind, things you'd never think could be done with a wheelchair, a trach, a bipap, while immobile.  I can watch them and be happy for them, and think "Yeah!  They're getting to do what they want!  That's awesome!"  Because they're choosing to do those things, and it's fantastic that they can find a way to make it work.  The exclamations in my head are never "Wow, their life is full!  They're accomplishing so much!"  Because to me, living is not defined by activities - not if the fullness and accomplishments they provide aren't enjoyable to obtain, or the activities are ones that scare you, or make you feel unsafe or uncomfortable.  Full living has happiness in it, and enjoyment, and it's helping others to feel happiness and enjoyment.  There is plenty of the scary, undesirable, and unfun that we as humans trudge through every day - why elect to subject yourself to it to meet someone else's definition of a full life?  To me, anyway, that's what makes a good life.  I can't define living for anyone else ;)

Pushing - we took her out at the end of November to get a tree.  Success!
So the next week, we went to the Christmas parade (above).  It was mostly enjoyed.
So after that, we hung around the house.  Cues come from Lucy.

For some kids, all of those events and activities are just want they want to be doing, what they enjoy - and for them, it makes life full.  That's wonderful for them!  But I hope that when I post pictures of Lucy hanging out, in her bed, doing the ordinary, unexciting things that she likes to do, you can look at it and think yeah!  She's happy!  She's doing what she loves!  She has such a full life!  Because for her, that's exactly what it is.

“After all," Anne had said to Marilla once, "I believe the nicest and sweetest days are not those on which anything very splendid or wonderful or exciting happens but just those that bring simple little pleasures, following one another softly, like pearls slipping off a string.”   LM Montgomery, Anne of Avonlea


Bob & Kathy said...

What a heart-felt tale of I understand it all.....You are one Amazing Mother...and I find Lucy to be a beautiful little girl....Your home is full of love...which is so important.....I pray for you're family every night..I really do...and hope some day for a miracle..which I do believe in...God Bless You...Love
Kathy, Kasey Girl, & Josie....

JoLeeNouvel said...

The world needs more of this: "I refuse to measure the fullness of another person's life by a set of standards put forth by someone who is not that person."

Lucy always seems like a happy child and you are doing nothing but the best for her!