Monday, June 2, 2014


I am having trouble putting words to my feelings lately. Things just feel different again.  I sat in church yesterday unable to sing a single word.  Instead I felt wave after wave of emotion and tears come over me.  I continuously had to tell myself "blink it back," "choke it down" and "swallow that huge lump of sadness that's stuck in your throat."  

We are at the beginning of summer, the most wonderful time of the year and I so want to feel every bit of the smile I am forcing across my face.  Last weekend, Memorial Day weekend, held with it all the possibilities and fun times that come with summer and I so wanted to feel feel it without reservation, to feel it without concern.

How do I do this summer with these boys and this girl? How do I do summer, every day of summer with all of us all together?  This oxygen thing is trying to separate her from us.  All of her equipment is trying to do that to us, it's taking our place beside her.  It's pushing us further away from her, it's making it hard to get out with her, it's making it hard to travel and hard to vacation with her.  

She wasn't on oxygen last summer.  She no doubt should have been we just didn't know, but nevertheless she wasn't.  I didn't appreciate those years we were oxygen free enough.  She wasn't on cpap last summer either.  When we left the house we didn't have to travel with those things then.  

Our girl loves the water.  How do we go swimming with her this year?  We don't have a pool, but if we get an opportunity to swim sometime this year, how do we do it? I guess she gets to be in the water for a bit and then she has to get out for a bit and get on her oxygen.  That sucks.

When will we ever get back to the beach?  We haven't been since Sophie Kate was 10 months old.  Sand is not wheelchair friendly at all.  I miss it.  

I try to plan the days that we are going to get out and do things on the day Sophie Kate is with her nurse, but in doing so that means we have to leave her behind and that is incredibly difficult. When you see me out with my boys you have to know that as wonderful as it is to spend time with them and as needed as that time is, my heart hurts because she is not with us.  

I know part of my problem is that I am focusing too much on the horizontal and not enough on the vertical.  I am spending too much time watching and longing to do what everyone else is doing and not enough time in the Word and in relationship with my God.  I feel the discontent and jealousy creeping in.  I know full well that satan would love nothing better than for me to spend this gift of summer longing, wishing, worrying and fretting about what we can't do.  He would love for me to spend the next two months unhappy, discontent and in an all around bad mood.  He would really love it if he could get me to show my kids that you can't be happy unless you live as the world tells you to live.  

I know I am in a fight right now, a battle.  I feel it pressing in on all sides.  Outside influences and thoughts that are not of God are taking up too much space in my world.  My girl doesn't know of a world without joy and smiles.  I have never seen someone more content in their circumstances than her.  She finds joy in the most simplest of days.  She doesn't deserve anything less than 100% of me.  These boys don't deserve anything less either and neither does their daddy.  God has appointed me for this task, for these days with these kids...for this summer.  I don't want anything to steal my joy in these moments with them.

2 Corinthians 10:4-5,  "The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds.  We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ."

Trying to keep my perspective vertical people.

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