Remind Myself to Live (by Lindsay)

I'm having a "mad at the universe" kind of day.

It doesn't help that we got about an hour of sleep last night (Ella finally stopped crying around 4:30 am).  And that was on top of a pretty rough day yesterday.  In addition to having a mouth FULL of canker sores, which is nothing new for me, but it's been a while since I've had so many that it makes me feel physically sick. 

But leading up to Thursday, I was having a pretty good week.  I was in a good place.  Almost a little at peace.  

I expressed these feelings to our pastor this week, and he started to say something, stopped himself, and then said "Never mind, I shouldn't tell you that".  When I asked him to elaborate about what that was all about (c'mon, everyone knows you can't do that!), he made an up and down motion with his arm.  A roller coaster motion.  Bursting my little bubble of thinking that I might be finally ok with everything.  Ha.  

But of course he was right. 

Not that I wouldn't gladly accept a week of feeling good about things.  But I need to remind myself that there will still be difficult times.

Times like right now.  

Ella is STILL getting worse.  We see it every day.  It is so hard to work on "therapy" skills for two reasons.  First, we know it won't prevent the regression from happening.  And second, it's so hard to watch her struggle so much.  Today her OT commented on how much she is still regressing.  She said she normally doesn't want to say anything about it (as to not upset us), but Ella's 6-month review is coming up, so we needed to talk about it today.

It breaks my heart watching Ella try to do what her growing mind wants to do.  Like push a baby doll in a stroller.  Such a simple task for a toddler.  But for Ella it's almost impossible.  She tries SO hard by hitting the stroller with her wheelchair.  But it doesn't turn the way she wants it to, it gets stuck in corners, etc.  And like any other 1-1/2 year old, she doesn't want help.  We're tempted to hide the stroller, so she can't try (without succeeding) anymore.  And that thought fills me with such sadness.

I'm also coming to the realization that our life will probably never have "dull" moments.  As some things start to fall into place, new challenges arise.  Constantly.  And it's exhausting.  On every possible level.

And then yesterday, Ella was evaluated by a developmental therapist (at our house), who made a comment about how obvious it is that Ava and Henry are being negatively affected by all of this.  Great.  Don't get me wrong, she wasn't saying it in a bad way (implying that we're not doing a good job with them), she was just pointing out that SMA is being hard on them as well.

Finally, at some point in the near future, we're going to have to start making decisions about possibly introducing some more serious medical interventions (g-tube, Cough Assist machine, bi-pap machine).  And these are not decisions that will be taken lightly. 

But I'm trying so desperately to focus on why I had such a good week last week.  Why I was in such a good place.  

And I think part of it was because I was constantly reminding myself to live.  To truly live.  To live in the moment and enjoy the beauty of life, without dwelling on the challenges.

It's not an easy task.  For anyone.  

But it IS possible.  In the midst of everything going on, I was able to do it.  To some extent, anyway.

There is one place in particular, that brings out these positive feelings in me.  

Church.

At the end of every church service, one of the pastors calls out, "People of God, what are we called to do?"  And the congregation replies, "Live the love of Christ!" 

This past week I've found myself reciting those words over and over.  "Live the love of Christ!"  It reminds me to LIVE.  It reminds me to LOVE and that I am LOVED.  

These five simple words are very powerful to me... 

                    I just have to keep reminding myself of them...