Thursday, September 25, 2014

When Life Hits Hard. Again.

"What lies behind us and what lies before us are tiny matters compared to what lies within us."
-Ralph Waldo Emerson

It is a hard week. One of many. One of a huge physical setback that has doctors scrambling to do cultures and biopsies and decide on which medications we need to start. A week that has them squeezing us in for multiple appointments which means multiple drives to UNC. A week that has me and Todd stressing. A week that includes many hours at school meetings to make changes to the IEP to include tube feedings during the day. A week where the older two have to play the supportive and patient role yet again as their own needs get scooted towards the back.

This is yucky stuff.
Stuff that makes my heart hurt.
Stuff that makes Todd angry.
Stuff that makes siblings worry and cry.

Stuff that lets us know Owen is in pain. 

And watching your child hurt can get really really old, really really fast.

And then I turn on pandora, and I hear the Oceans song and I know, He's there.

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
- Hillsong United

And so we dig deep into the sand and hold strong as the waves crash, trusting that we will come up on the other side. We may be gasping for breath, but He will get us through it.

Because what lies inside Owen? It is a strength that can only come from the One above.

And watching him endure heartache after heartache after heartache and still be the vivacious, strong kid that he is? It teaches me one thing:

Life is hard. And Beautiful.

And life with chronic illness is tough. But this kid is tougher.

All three of them are.

They're a team and they've proved that over and over and over again this week as our family works through many setbacks. The older two now have to help get formula and tubes where they need to be at school each morning so the nurse can do what she needs to do at school. And they do it without complaint.

And for these three beautiful, tough souls, I will forever be grateful for what lies within them.


  1. heavy....yet is SOARS at the spirit in this post...THE SPIRIT within the one who posts it too! We serve an awesome God and His mighty hands are at work in each of your/our lives as Owen rises to the newest of challenges. As everyone does. Prayer warriors are united. Family is strongly determined. God is busy.....and we ARE called upon the waves! A song I sing loudly AND off key whenever I hear it! God hears a beautiful praise when HE hears me sing it!!

  2. Sigh. I'm sorry. I wish there was more I could say that would mean something or be profound or the "right thing" to say, but I don't know those things. I can say that I'll be praying, because I will. And that I wish it wasn't so hard. And that I look up to you and admire you both, even though I only know you from a distance. You seem to take so much of this with stride and with a strength that I don't know how you do it. It's a lot going on, and I'm guessing more than you ever even say. But I'm glad that you do say some of what's going on so that we can be aware and sensitive to it and praying and supportive as much as we know how to.

    1. Thanks Samantha! Your prayers and support mean more than you can know!! Loved hanging out Friday night. :)