In early November 2008 my youngest daughter started getting sick and my life turned; upside down, sideways, inside out…you name it. Very quickly she started deteriorating, but no amount of tests could tell us why. The last recourse would be to do exploratory surgery, but the doctor just didn’t want to open her up. So, we left. No, I mean we literally left. If there was nothing left to do, and no answers were forthcoming, I decided we should leave. I simply packed up all three of my kids and drove to French Lick, Indiana for a week. Yes, I ran away. That was in April of 2009.
When we returned she seemed to get better, a little anyway. She wasn’t as jaundiced. She was actually eating relatively regularly. So we thought the worst had passed. Well, everyone else did. I quietly worried that the storm hadn’t passed, but was instead laying dormant for a little while. Turns out I was right, because later that Summer she started breaking down again. Again we went in for a battery of tests. And again we came up empty in the answer department. The last doctor we saw literally patted me on the head and said, “Well, I can’t figure it out, so just go on and live. Check back in with me in 6 months.” ARE YOU KIDDING ME!
Then we lost our insurance. (Well, we didn’t lose it. I knew where it was, we just no longer qualified for it because I was no longer working regularly on TV.) So, we waited, and waited and waited, until finally we got All Kids. Then we waited another 5 months until ALL Kids finally got the paperwork right and assigned us to the correct primary care doctor. That put us at September 2010, and a month later we were in our third GI specialists’ office. Again with the tests that produced no answers. But wait. This doctor was different. He wasn’t satisfied with no answers. So I got him all of the paper work and notes from the previous doctors, and he read. And he read. And he read. Until he finally came back to us with an idea. He decided that it was past time to go in and look deeper. And so he did.
For the last two plus years I have been holding my breath. I didn’t realize it. I don’t even remember doing it, but I am feeling the oxygen deprivation now. As I sit here at my daughter’s bedside in the recovery room of Mount Sinai Hospital, I feel the dizziness, I see the white dots, I feel weak. I feel weak with relief, and with an equal measure of fear. I feel relieved that the surgeon has determined that something is clearly not right inside my daughter’s GI tract; that the pain she has been complaining of for the last two years has not been a figment of her imagination, or mine for that matter. Strange thing to celebrate, finding something abnormal medically. But you can’t imagine what it has been like to have doctor after doctor dismiss her pain, pat me on the head, and treat me as though I’m an indulgent, over-reactive mother. You just can’t know the frustration. But the flip side of this coin is the wondering what caused this abnormality and have we taken care of it with the work of today’s procedure? The doctor wants to be hopeful, but the truth is he doesn’t know. He simply can’t know, and neither can we, because we still don’t have a name for this war that we have been waging.
So, I sit here listening to the beeps on the monitors surrounding my little girl; her and all of the other hope filled patients she is sharing this floor with. I sit here and stare at my precious child with an ache in my belly, a lump in my throat, and a tear in my eye that I am holding back just as I have been holding my breath.
I believe this child of mine is a gift. Some might say a gift from God. I don’t deny or agree. (I don’t think I have to identify where she is from, only celebrate that she is here.) I stare at my little precious gift hoping that by sheer force of will my love for her can change her circumstances. And if I stare hard enough, long enough, and lovingly enough, when she finally opens her eyes she will do so to encounter a new reality. One that is pain and sickness free. And then maybe, just maybe, we will both finally, easily and deeply breathe.
Miss Lori can be found Musing from her Minivan at MissLori.TV , Wearetherealdeal.com , YoungChicagonista , ChicagoMomsBlog , and ChicagoMoms.com. You can also see her Activating to Be Great at Miss Lori’s CAMPUS on Youtube, Facebook, Twitter and LinkedIn.