My God, My God

"My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? My God, I cry out by day, but you do not answer, by night, but I find no rest." (Psalm 22:1-2)

I'm right there with David, asking WHY!!

Last night was a rough night. Samantha's site looked ready to be changed, so we embarked on the dreaded, but necessary, task of putting in a new site.  Except we didn't.

See, when dealing with adhesives, needles, fancy inserters and such, there it's bound to be a dud. In our case, there were two.

Samantha uses a Cleo site. It is inserted using something that looks like an ink stamp. You grab her arm, find a place for the site, put the device on her skin, and press down. A needle inserts the catheter and the needle is drawn safely back into the device. The next task is taking the device off and leaving behind the site and surrounding adhesive. Here is a detailed step-by-step guide, if you want to understand it better.

Yet, last night, the adhesive would not stick. I tried another one. Same problem. I refused to try a third. We've poked her as many as four times in the past before one stuck and I didn't want to put her through that.

The whole time this is happening, Samantha is screaming. She is wailing. She even said: "I don't wanna site."

Heart. Broken.

You know that parental ownership we claim to have when our kids do well (like we had anything directly to do with their first steps!)? Well, it cuts both ways. You also feel the guilt for the bad things that happen to your children that are out of your control.

I was up all night feeling incredible horrible that I had to hurt her and nothing was accomplished. I'm praying her current site holds on a little longer. I'm worried if her arm will heal enough by then to go through another poke., I'm praying the adhesive will work. I'm racking my brain for ways to make it work. I'm hearing her cries echo in my mind....

I'm hating PH. I'm hating that she will probably need a site change right around her birthday next week. I'm hating that not long after her birthday is the anniversary of her diagnosis.

In the PH community this is a big deal. It marks another year of triumph over the disease. For me, it marks the day my world changed forever. The day I had to accept the hardest truth any parent could hear. The day when needles became commonplace in my home. The day when PH invaded every inch of us. The day I got angry at God.

Like David, I have often asked why God would allow this to happen. Why has He forsaken us? Where is He?

I know He is still there, but I'm human and I get angry. I get frustrated. I get depressed. Really depressed.

I wonder if I'm actually doing anything to help my daughter. I'm wondering why so much had been thrown at us lately.

I just want a break, some rest in my soul. I think David says it best later in Psalm 22:

"For he has not despised or scorned the suffering of the afflicted one; he has not hidden his face from him but has listened to his cry for help" (Psalm 22:24)

"The poor will eat and be satisfied; those who seek the Lord will praise him---may your hearts live forever!" (Psalm 22:26)