You Are There

Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there.If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.
Psalm 139:7-10

The first time I spent time on this verse was when I heard the song by Child of Mercy, called "You Found Me."  This song and verse crept into my mind tonight...

On Friday, it was the anniversary of Samantha's diagnosis of PH. This is bittersweet for us. Without this diagnosis, there would be no medicine to help her live, but I wish she didn't even need it. Then, two little girls (ages 3 and 4) lost their battle with PH.

Also is this time, Samantha had an appointment with her PH team. Her ECHO looks great, but it's time to schedule her annual cardiac catheterization (called cath lab, for short). This is under anesthesia, which is always a high risk for PH kids. Ugh!

Add this on to the decisions we need to make about my husband's job search, and we have been under a lot of stress.

But the tipping point was tonight. Samantha needed another site change...and I was stupidly doing it myself. She is so much more aware now and that makes this increasingly difficult.

Three pokes and the return of Daddy later, she was all tuckered out. We had to put the site in her leg, which will present it's own challenges, but we will deal with it...because we have no choice.

And, all I want to do is run. I want to take my family and go somewhere that PH and death can't find us. I want run to a place where we can all breath easy and enjoy each day without worry.

But, then I remembered the verse and the song. No matter where I go, God is with me....which means He is here now!

He is here when I cry myself to sleep. He is here when Samantha screams out in pain. He is here when I ask why.

He will find me no matter what, because He is the refuge I seek! He is the place where death and PH are irrelevant! He is the place with no worry!

I don't know how to "cope" with PH. I don't know how to make it my "new normal." I don't know how to be okay with the torture my baby girl endures. But I do know that God is here. He always was...