A Blog Holiday

November 30, 2009

Sorry to have not updated in so long… I was on a blog holiday… in honor of Thanksgiving. Okay, maybe I was just really tired and haven’t had anything very nice to say.

I feel so ungrateful admitting that. In reality, we had a nice holiday and I got out quite a bit over the long weekend. Tanner is feeling really good and we’ve been looking at houses again to see if we might find a big yard to romp in when we can’t be around others (ours is a postage stamp). I cut about six inches of hair off and feel so light and wonderfully different. (I felt conspicuous in this family with all that hair.) I saw New Moon with girlfriends and laughed more than I have in a long time. We got a Christmas tree on Sunday morning and actually went into the outdoor garden section of Home Depot with both kids in pajamas (the only public place we have been in almost a month). Tanner ran all over in iCarly pajamas with her pale, bald head uncovered. It was a sight to see.

So, I should have had lots of nice things to say, but somehow I just couldn’t write them down. Whenever I sat at the computer, I wanted to write about how frustrated and irritable we all are cooped up here. About how Tanner is not sleeping, waking 4-5 times a night, sometimes with nightmares, sometimes sleepwalking. She is getting up consistently now at 4:30-5:00 am for good. About how John and I are exhausted. About how Tanner and Jake, once fast friends, can now not spend 2 minutes together without fighting. About how Tanner has asked to go back to see the play therapist because she knows her emotions are out of control and she doesn’t know how to fix it.

I know I should be grateful that our plan to keep her isolated and avoid any more hospitalizations during this phase has been successful. And, I suspect her counts will have come up when we go to clinic on Friday and we will gain more freedom in just a few days. I know how I should be feeling, but I just can’t seem to get there.

Instead, I feel irritable and cranky (have I mentioned I don’t stay at home very well?) and tired of playing 2- and 6-year-old games. I feel desperate for normalcy and a little resentful of all those people I see just romping about taking their freedom for granted. I realize that makes me a glass half empty kind of girl this week, but that’s just the honest truth.

Thanksgiving night, after having a nightmare, Tanner asked me what good thought she could think about while she tried to go back to sleep. I was completely stumped. What good thing could she look forward to? A playdate with a friend? No. A birthday party? No. A special event at school? No. A movie with Mom and a girlfriend? No. No. No. No. No. No. Six months ago, I could have rattled off five fun things to look forward to without even thinking about it. Thursday night, a full 60 seconds after she asked me, I came up with this beauty: maybe you and Jake could get your little stuffed dogs and make a little bed and house for them out of a cardboard box… and decorate it. No wonder she showed up in our bedroom 5 minutes later crying that she was still scared.

It is a horrible feeling to realize your child has nothing to look forward to but another day spent with her Mom and her brother in the house or at some abandoned playground, hiding from other kids and germs.
Tanner’s state of mind is evident in her play. She has played cancer nurse every day for a week. She takes lab tests, delivers chemo, puts me and Jake to sleep for procedures and delivers the bad news that we have cancer… over and over again. This week, the cancer has taken advantage of our weariness and has moved in to take over.

Tanner has just woken up again for the third time already tonight. It promises to be another sleepless night. I snapped at her when she showed up at the balcony the third time, telling her to go back to bed and refusing to come up again and tuck her in… again. I’ll go check on her in 10 minutes and help her if she’s not asleep. There’s no way to know whether her sleeping problems are physical or emotional. I’m leaning towards emotional since she hasn’t had chemo in several weeks. Either way, they’re exhausting for all of us.

So, now you’ll wish I hadn’t broken my blog holiday. Hopefully, I’ll cheer up or it will warm up so we can at least go outside. Friday seems a long way away.

Love,
Beth

8 thoughts on “A Blog Holiday

  1. I don’t know if my story will help or not, but when Lily was around the same stage of treatment as Tanner is now, she and Sophie came over to spend the night with us. They wanted to play doctor/nurse. All the play diagnoses and procedures were about cancer, leukemia, ports, chemo, lumbar punctures. It was horrifying and sad for us but we let them take the lead and we played along since it was obviously what was on their minds. In their play, we kept getting the very matter-of-fact diagnosis of leukemia with an occasional brain cancer thrown in for variety (likely because Lily has met three children – Bishop, Cooper and Samantha – at Vandy who are battling brain tumors).

    For the past few months, though, they’re back to playing school (formerly their favorite game to play when they visit). So maybe this is a necessary stage for both Tanner and Jake to work out some of their feelings about this.

    Okay – so that’s my pseudo-psychological discussion for the day! 🙂

    I was so happy to meet you, Tanner and Jake at clinic last week.

  2. Beth,
    You don’t know me but I heard about Tanner months ago through a friend of a friend of a friend and I’ve been keeping tabs on her progress everyday since then. First off, know that my prayers are with you and your family everyday. I can’t imagine going through what you’re going through.
    After reading your blog today and how apologetic you seem for not “having anything nice to say,” I had to reach out to you and tell you that you are an amazingly strong person and I admire you tremendously. I’m sure you’re rolling your eyes right now and thinking you’re not very strong, but your blogs have been surprisingly positive and uplifting even during the hardest times. I think my blogs would’ve been much more grumpy and grousing all the time if I were going through your trial.
    Maybe you’ll appreciate what I’m saying more a few years down the road when you look back and read your blogs. I think you’ll probably surprise yourself at how composed and resilient you seem.
    Just stay focused on God and His healing power to sustain you and heal Tanner. I’ve found the following to be comforting during times of trial in my life:
    “Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.” Psalm 91:14-16

  3. September 1 my family was at Vanderbilt Children’s for my daughter to have surgery and we were stuck on the third floor for her hospitalization time in surgery holding. I admire all you have been through. We were there just 29 hours and to say we were all exhausted was an understatement. I am amazed that after six months you aren’t snapping more. My daughter is 3 and she has had nightmares and talks about the doctors and nurses a lot because for over a year we too have spent little time away from home. Do you have a webcam where she could maybe play with another child via that? They could play dolls or something that way?

  4. I THINK IN THE PAST YOU SAID SOMETHING ABOUT THIS BEING THE NEW
    ” NORMAL ” SO IT IS ONLY ” NORMAL ” TO HAVE THESE FEELINGS. OTHERWISE YOU WOULD NOT BE ” NORMAL ” I THINK YOU ARE AS CLOSE TO ” NORMAL ”
    THAT ANYONE COULD BE IN YOUR PLACE.

    HAVE A ” NORMAL ” DAY

  5. Beth-
    This blog is not only to keep all your friends and family informed,
    it also should serve as a little “therapy” for you…a place where
    you can be honest and let it all out…that’s what all of us are here
    for! And I daresay, not many of us could go thru what you are with
    as much grace, humor and resilience! You’re SO entitled to have
    a bad day or a bad week…wallow for a little while and then move on!
    You’re all in our thoughts and prayers…and may next week be
    a little better!!!
    Ginny

  6. I am not at all unhappy that you broke your blog holiday! This is your place to share, to vent, to let off some steam, to name your reality for the rest of us. Who decides what you “should” be feeling? Feelings are feelings, neither bad nor good, they just are, and you can’t help feeling what you are feeling…so should doesn’t figure into it. You’ve named several things that you are thankful for, so we know you are grateful — but who would blame you if you are not? You get to feel however the hell you feel! And you get to tell us as much or as little about it as you want. You’ve been incredibly positive throughout this hellacious journey, but even if you hadn’t been, who cares? Your experience is your own, and your thoughts don’t have to stay pretty when you are in a bad place. Okay, enough preachiness — all to say, though, be gentle with yourself and feel what you feel! And keep hanging in there!

  7. Beth,
    I have known you my whole life…but i don’t think until you started writing this blog i really ever knew you at all. Words can’t tell you how proud i am of you and how much i admire and respect you. You are so blessed to be able to write in a way that really let’s people into your heart and mind. You are such a strong, positive person! If you didn’t vent…i’d think something was really wrong with you! Letting so many people into your life brings such hope and assurance to so many…more importantly you should have a place to vent with people who love you! We are here for you…we love you~ Remember (Hebrews 13:5) and…Be who you are and say what you feel. Because those that matter, don’t mind; and those that mind, don’t matter! I love you, Jenny:-)

  8. Hi Beth, I am the “New Nurse” at Moore Elementary and heard about Tanner through Ms. O’Hara. I just want you to know that even though I do not know you, I admire you and the strength you and your husband seem to have. It is definitely ok for you to have bad days and this blog is your way of reaching out to others. Cancer is a terrible disease and you have every right to all of your feelings, good or bad…so keep blogging. You may not be able to physically get out of the house, but maybe this can be your way to “get out of the house”…I do hope I get to meet you and Tanner and your husband and Jake soon….I will keep up with you all on here, but if I can be of any help, please call the school for me.

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