House Of Cards

posted by on 02/01/2011 | 14,771 comments (leave one of your own)

I had a large weight on my shoulders the first week of January, a feeling that something was coming, something big that was looming over us and not in a good way. I’m usually right about things like this and I have never wanted to be more wrong.

Troy had his follow up appointment with the hematologist to find out if he needed his bone marrow checked and that would be based solely on his blood count results from the last two months.  I was dreading the appointment, I tried not to worry too much, but I couldn’t shake the grey cloud full of bad hanging over my head.

The hematologist made his way to us, clutching a single sheet of paper that charted Troy’s white blood count with every blood draw-except for one-well within the normal range.  It was great news; he was diagnosed with acute neutropenia and I was advised to keep my eye on him and perhaps retest in a few months.  I couldn’t help but feel like we won, like we dodged the grey cloud full of the nasty that could have altered our everything if that single sheet of paper would have contained numbers that weren’t the ones we had needed, needed since June. Troy and I practically ran out of the Children’s Hospital, stopping only to spend my hard earned cash on a stuffed wiener dog he saw in the gift shop window.

The following Monday it found us, the inevitable cloud.

Zoe’s school was canceled that day due to snow and she woke up with a low fever and complaining that her back hurt.  I figured it was a bladder infection or perhaps a kidney infection, she probably got up eight or nine times the night before to use the bathroom.  I gave her some ibuprofen and put her in my bed to let her rest.  We didn’t go to Urgent Care right away, I needed to order her birthday dress online, I wanted to be sure it made it here by her family dinner on Saturday.  I also wasn’t to keen on taking Troy with us, he’s a germ magnet and gets sick easily, I didn’t want to risk it. Zoe slept fitfully for a few hours and I reluctantly decided to load everyone up and make the trek to see the doctor.

We arrived around noon and after assessing her symptoms, they had her go into a cup so they could test her urine.  She was absolutely miserable and can barely walk.  A few minutes later, the doctor asks if he can speak to me in the hall and tells me that they notice something in her sample and he wants to now draw blood.  Zoe doesn’t want them to, but Troy tells her not to worry, “it’s just a little poke”, I guess getting your blood drawn twice a week for two months qualifies you as a veteran.  Ten minutes later, the doctor informs me that Zoe needs to see a specialist immediately, he’s already phoned ahead and they will be expecting us around 3:30 that afternoon. We are sent home and I know. I know it’s here.

Twenty minutes later as we are walking into the house, I hear the phone ringing. I answer and it is the specialist that we are supposed to see in a bit. I take the phone into the garage to speak with him, shutting the door behind me.

He tells me he has seen the fax of Zoe’s labs.

“I need to you to go straight to the ER, I’m certain it’s Type One Diabetes.  Her blood sugar is almost 500, so we need to admit her as soon as possible, they are expecting you.”

I hung up the phone and stared at it, willing it to ring again and the doctor tell me it was a mistake.  I walked back into the kitchen and stood silently at the sink and stared out into my backyard, like I always do.  I could hear the TV in the living room where the kids were, watching a show collectively, like they always do.  I turned to water on and began to do the dishes, the water was scalding hot, I never turned on the cold, I let it burn my hands and I didn’t notice. There was nothing that could hurt as much as the pain searing through my heart and bubbling at the back of my throat, nothing that could rival what I was about to tell my daughter and change the course of her life.

I went into the living room and sat down on the coffee table, facing her as she sat on the sofa.  I told her that we had to go stay at the hospital, that she has diabetes.  She looked at me with wide eyes and asked how long she would have it, if medicine would make it go away and I had to tell her no.  As I held her and she cried into my shirt and I cried into her hair, I wondered if she would remember this moment, the tenth day of January, five days before she turned 10, the moment diabetes came to stay.

She was in the hospital for three days, my best girl was severely dehydrated and had lost almost twenty pounds.  I couldn’t believe the number that was showing on the scale when she stepped on it, her collar bone jutting out of her hospital gown, she looked so thin.  She was showing all the signs, I will never forgive myself for not catching it sooner.  She was using the bathroom at night almost every hour on the hour, her little body trying so hard to find somewhere to put all the extra glucose she couldn’t break down.  I know now that if you search online for those symptoms, Type One is the first thing to come up.  I spent hours researching Troy’s neutropenia and his issues with his white blood count, I’m ashamed to say it never even crossed my mind to be worried about Zoe.

The second night we were in the hospital, after Jeff, Troy and Zoe’s dad had gone home and Zoe and I were ready for bed, I made the mistake of looking up articles on the computer.  It was too much and it began to sink in, this had us by the balls.  All I could think about was my girl and what might happen down the road.  The whatifs were sinking in and coming down on me hard.  I had to leave the room and as I stepped out into the hall, I wanted to run.  I wanted to go back to a place where there was no diabetes, no thoughts of insulin and needles and finger checks.  No child deserves this, especially my best girl.

I stood in front of the nurse’s station in my pajamas and had my very first panic attack.

A nurse walked with me and we sat together for some time on a bench near the entrance to the pediatric floor.  She talked to me and brought me water, she told me how her daughter was sick and had been sick for ten years with a disorder to her nervous system.  I asked her if she would tell Zoe that I went for a walk, I couldn’t go back to the room, I didn’t want her to see me that way.

I went down to the family lounge and it was empty.  It was almost midnight, most families had gone home or were trying to sleep.  I sat in the corner and sobbed.  I could feel the anxiety in my chest, twisting and turning and not letting go as I struggled to breathe.  I looked up and saw an older man walking towards me, he told me the nurse had called him just as he was turning up his driveway.  He was a chaplain that works at the hospital and this wasn’t his floor, but the regular lady on call had taken the evening off due to illness.  I admit I bristled when I heard he was a chaplain, I didn’t want to talk about God’s plan.  He sat next to me and told me that his son also had diabetes and was diagnosed when he was very young, that’s why he drove back to the hospital to speak with me despite the fact that it was so very late.  I asked if his son ever had any severe lows or had to be hospitalized when he was younger and he told me no, that it is a manageable condition.  I asked how his son was doing today, he was almost my age, and the man told me a story of how his son was killed a few years ago in an auto accident.  He told me he knew how I felt, that I needed to let people help me and our family and maybe one day, we can help someone else.

I will never forget that man and his words and how he threw me a much needed lifeline to pull me out of the deep, dark hole I had sunk into that evening.  It still hurts, I wrote this post and deleted it several times over the last three weeks, but this is our new normal.  I currently give Zoe four injections and check her glucose at least six times throughout the day.  It is getting easier, she is feeling so much better with the insulin and she has almost gained all of her weight back.  It doesn’t seem to phase Zoe, she has been so very resilient, not to mention so very brave.  I think often about that man and his son, how he would probably give anything to have his son back, diabetes or no diabetes and I know we can do this, that we will make it.

So, that’s where we’ve been, where we are.  Our little family has been rocked to its very core, but we are still us.  I realize for the first time how so very delicate the structure is, the structure that can come crumbling down in an instant.  We are still here slowly putting it all back together the best way we know how, but most importantly, we are still standing, standing in our house of cards.

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