House Of Cards

posted by Zakary on February 1, 2011 | 122 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.

    Comments
  • Rachel


    We went through this about 2 months ago with my husband only he had pancreaitis (Sp?) on top of it. I know it takes a bit to get adjusted but soon she’ll be back to her old self. Don’t kick yourself for not seeing the signs. It’s easier to look back and notice what you hadn’t seen before. Everything will be peaches soon, I promise.

  • Lacey from Weekends At Home


    I read your post earlier this week, but am just now commenting. I had dreams about it the night that I read it. What a thing for your family to go through. My heart goes out to you.
    You totally are 100% not allowed to beat yourself up over not recognizing the signs. You had no way to know that she was showing symptoms. Things are always clear after the fact, but that is only after. In the middle of it all you had no reason to suspect diabetes.
    It’s good that you all now know and can begin learning to live with it and manage it. One of my friends has it (and has since she was a wee little thing). It does not disrupt her life in the least. She travels, she goes out, she went to college, has a job, and all the rest. She lives her life, just as Zoe will live hers.

  • Katy


    Hello,

    I saw your blog from modg and this happen to be the first post I read. I must tell you, I have been working with kids with type 1 diabetes for 4 years now, and EVERY SINGLE PARENT without a doubt says the exact same thing, that they wished they noticed the signs earlier, it is so much easier to see the signs after the fact.

    I have met hundreds and hundreds of really down to earth, really great, really amazing kids, HEALTHY kids who just have a little extra work to do than the rest…It will be hard and it will be some extra work, but she will be just fine.

    Please please email me if you need ANY resources. I have tons!

    Good luck!

    Katy

  • Veronica


    I’ve been thinking of you. I wish I knew what to say. I found you this instead. :)

    http://www.uncommongoods.com/product/squirrelly-love

  • Lluvia


    I came here from Amanda’s (MODG) FB status. I don’t know you ans you don’t know me, nut as a mother, I feel your pain. Praying that God gets you and your loved ones through this. Good thoughts and prayers for Zoe.

  • Kristina


    Chin up! I’ve had type 1 Diabetes since I was 5 (I’m now 31) When I was diagnosed in 1985 they told my mother is was going to die. She took pictures of me playing in the back yard because she didn’t know how much time I had left.

    Now, with all of the new technology to make it easier to manage, you are really at great advantage. She’s going to be OK. It’s just an huge adjustment.

    Feel free to email me if you have any questions :)

  • Amy


    Oh, I am so sorry …

    And while my heart breaks with the news, I would like to say, that my friend was diagnosed with Type I Diabetes when she was about your daughter’s age. She actually slipped into a diabetic coma before her parents found out–they didn’t know if she would even live. Today she’s in her thirties, happily married, with four kids.

    It may seem dark right now, but the sun will rise again…

  • Kel


    We’ve never met but I’ve been following your blog for a while now – anyone who spells out “send wine” in toy blocks is someone I’d like to know.

    The love you have for your kids comes thru in each post you write about them. Please don’t beat yourself up for not recognizing the signs – because you did! You realized your girl needed to go to the doctor and you took her.

    Many hugs to you all. I know you, Jeff, Zoe and Troy are going to have a great, happy and squirrel filled future!

  • Stacy


    Ah, these children of yours, Zdub! They keep you on your toes. See, you need this kind of worry to keep you thin and beautiful. Otherwise, you’d just sit around eating bon bons and watching squirrels, growing plump. Like me. :)

    I’m sending happy thoughts, mega hugs, and all good wishes to you.

  • Britt


    I don’t know why but I have not commented on this yet. I was bracing myself for days before this was posted, and though I was sad when I read this, I didn’t cry until I talked about it with my mom. It is always, always ridiculously difficult to find a bright side to situations like this, but luckily, there is one. Clearly, you’ve birthed the two most kick-ass kids ever, and Zoe will be just fine. It’ll definitely become a habit to do the insulin shots every day, and she’ll be able to turn down all the guys knockin’ down your door in a few years.

    Love to all of the ZDub clan,
    Brittany

  • Samantha McKinnon


    I only just read this post and it got me all teary.

    How horrible for you all to go through. I’m glad to hear Zoe is doing better now.

    xxx

  • Issa


    So I’ve spent the last 20 minutes reading some of your archives.

    I’m so sorry you guys have this to face, but your daughter sounds amazing and I’m sure she can handle it.

    The post about her telling her class? Reminded me of when I was in 5th grade. Nathan. He stood at the front of the class after being gone from school for 10 days and explained why to us. Diabetes. Type one. I remember thinking he was brave. He didn’t act scared up there though. Because of that? None of us ever teased him about it. It was just part of him.

    I hope your daughter’s classmates are as kind.

    ps. I had to smile at you showing up every day. Nathan’s mom did that for two years straight and eventually he learned to do it himself and then, in HS he got an insulin pump.

    pps. The photo of your kids at Lake Dillon? Awesome. God, I love that place. So beautiful.

  • Chrisy


    It’s difficult to read this post. My 13YO son was diagnosed when he was five in 2003. Like you, I felt terrible that I missed the obvious signs and symptoms. My 11YO son is in a Trial Net study and unfortunately Type 1 is heading his way, too. Found your blog via a friend’s twitter account. Nice to meet you.
    Chrisy recently posted..On Turning 45My Profile

  • katy


    You made me cry. Thanks for this–it’s painful in the best possible way–like a deep tissue massage. You explained how I felt on August 9th, 2011.
    katy recently posted..386 <—abominableMy Profile

  • Steve


    Our girls are about the same age. Lia was 8 at diagnosis. She just turned 10. Not a day goes by that I am not left simply astounded and amazed by the grace with which she handles herself and these cards she’s been given. The hard part, I think, is for the parents to learn to accept and adjust. Seems it’s neverending.

  • Bernard Farrell


    I wanted to give you lots of hope. I was diagnosed as a 15-year old in 1972 when diabetes ‘control’ was really primitive compared to today. I recognized (though really celebrated) the 39th anniversary of my diagnosis earlier this month. I’ve really had no complications and I’m enjoying living life as much as I can as a middle-aged man!

    I believe your daughter will really be fine ultimately, though as a parent I also understand how heart-wrenching it is when your child is sick or has been diagnosed with a chronic illness. I’ve experienced both of these and it’s a sorrow almost too much to bear.

    Please ignore any bad news you may hear about life with diabetes. There’s so many good news stories that are never told. I’ve several friends who’ve had diabetes for over 60 years and are all well.

    PS: If you can at all please attend the CWD (ChildrenWithDiabetes) conference in Florida. These are wonderful, empowering events for all the family, including grandparents!

  • Claire Deters


    You posted this on the first day of February. On the final day of that month the love of my life was diagnosed type one at 21. I was terrified and I still am. He showed symptoms for almost 2 months before he was admitted to the ICU with a blood sugar over 1,000. As you know it gets much easier especially with the support of this online community. Your family is beautiful. And one thing I am confident of is that if there is such a thing as good timing for a diagnosis this is pretty close. Here’s to hoping for a cure, or whatever, for my boyfriend and your daughter.

  • karen


    zoe is so awesome! i love that kid!! sending good thoughts and prayers to her and your family…all the way from Toronto Canada.
    xoxo..i have to go to sleep now! your blog is awesome.

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