God, it’s Me, Kathryn. Where Are You?

I feel as though I am in a very deep, dark, black hole. I keep trying to crawl out, but no matter what I keep sliding down. The further I slide, the less light I see. The less light I see, the further my hope drifts away…

Yes, we are finally home from the hospital and as much as I would like to tell you that everything is better now, I can’t. With each and every day that passes I am sliding deeper, and darker into the hole, and I am losing the hope and the faith that I once had.

We have spent a total of one month in the hospital, two weeks in one hospital closer to home, and two weeks in another hospital in Atlanta. One-fourth of my daughter’s life has been wasted away inside a tiny hospital room. Let me tell you, days are long inside the hospital. Procedure after procedure, fighting to make sure everything is done right, multiple doctors, nurses, and specialists. Day in and day out.

It takes a toll. It takes a toll emotionally, it takes a toll mentally, and it takes a toll physically. The exhaustion is unbelievable. It’s taken a toll on our marriage, on our finances, on our family, and our lives. Yes, we are home, but the damage has already been done. The fight that was once within me, has gone, and I have nothing left to give.

After spending a month in two separate hospitals, the doctors still could not figure out what is wrong with my daughter, test after test, until they had nothing left to test. Almost all came back normal. They decided she is not choking, but retching. She retches if the volume of food is not correct, or if the amount of time that it’s given in is too short. They couldn’t figure out why she can’t gain weight or keep weight on, but after moving up the calorie intake on her food over and over they finally found an amount that she is steadily gaining on. The infection where her G-tube goes into her stomach is still there, no one seems able to fix it. She has had it for weeks now.

So we go home. And we figure out how to put the pieces back together. How to keep going inspite of everything that has gone on, inspite of the fact, that my daughter has awful retching episodes that no one can explain. Inspite of the fact that such a high calorie intake is doing a number on her little body. We have been told she will probably just grow out of everything. But until then, we just hang in there…

And then there’s the sleep. Her sleep study at the hospital came back abnormal. Three different doctors, three different opinions. If that doesn’t make you nervous, I don’t know what would. So we go home with an apnea monitor to make sure she is okay at night and doesn’t stop breathing. But that monitor constantly goes off until we decide that we can’t take it anymore and shut it off. There is guilt for shutting it off, but the exhaustion eventually wins over.

She still doesn’t sleep. There have been days and nights where she literally only sleeps an hour or two. She tosses and turns, she’s constantly gassy, but the prescriptions don’t help much. They tell us to give her melatonin, but even that only seems to help a little. And so I sit in her room, sobbing, begging her to sleep, because none of us can take much more. We just need sleep or we are going to lose our minds.

Then, two days after we got back home from the hospital, my husband’s first day at work, I get the news: my husband has deployment orders. Of course it’s okay, he’s not leaving for a long while yet, I am supposed to breathe easy in that, but I can’t. Why the timing? Why now? My mind is already months ahead trying to plan for his departure for months alone with two special needs kids.

Three days after we get home, we hear more news. Although we had been originally told that Tricare would pay for our gas, hotel, and food for the two weeks we lived in Atlanta, it’s not true. They don’t cover those expenses during emergency situations. We will have to pay for everything. We have spent the past few days fighting it, trying to find a loophole, but there is nothing. Nothing they can do. And so now we have racked up thousands of dollars that we must find a way to pay for. Because living in Atlanta is not cheap, let me tell you…

And then there is my son, who has missed us oh-so-much while we have been at the hospital. I have missed a month of his life, a month of raising him and watching him grow while I sat in the hospital. It breaks my heart to miss it all, to have to choose between my two kids. The stress of wondering if he was ok, the stress of knowing he missed his mommy and his sad little voice saying, “Mommy, come home,” every time we talked.

Now that we are home, I still have few hours to give to him, I haven’t had time to take to potty train him, or to go over the pile of papers from his school. I am constantly driving to another specialist or doctor appointment with my daughter, or fiddling with her feeding pump and apnea monitor, or trying to get her to sleep or to stop crying. The time to sit and play with him is few and far between. And that month I was gone? He grew up even more. Time is passing and I won’t ever get it back again…

So I sit here and am left asking, “Where are you God?” I’m here, but He doesn’t seem to be listening. The anger in me has taken over and there is nothing left I can do. “Where are you God, when all the desire to be the mother I used to be is gone? Where are you God, when I am too angry and disappointed to be the sweet and supporting wife? Where are you God, when all my faith is dwindling away and I feel like even You have left me?” And I hear nothing…

I found God when my parents got divorced, it was hard and took time, but I found Him. I found God after I miscarried our first baby. I found God through the multiple health issues I have been dealing with and through the severe anxiety that ensued. I even found God after my son’s multiple diagnoses of Autism, SPD, Apraxia of Speech, and Feeding Disorder. But right now, I just can’t find Him. I can’t see Him. I have lost sight of Him, and I don’t know how to get back to Him. I just don’t.

“Where are you God? It’s me, Kathryn. I am down in this very deep hole and I can’t get back up. If you’re there, show me, because I have nothing left to give.”