Normal is underrated

Normal.  It’s a word I’ve never really identified with.  Growing up as an overachiever of grand proportions, I’ve always shied away from words such as this. I’ve never aspired to flirt with Normal, or tango with Average, and can hardly utter the word… Ugh… Mediocre.  Routine? – the bane of my existence, and solid was a word I’d like to hear only in reference to my backside.  I always pictured myself living a more glamorous existence, chasing the tail of life, and filling it up with adventure.  I’ve discovered, however, that normal is relative, and certainly not bad.  In fact, I would even say I now crave normal.

This past week was surprisingly just that, with a daughter who was functioning as a wonderfully average five-year old.  Lulu is off of chemotherapy for almost two weeks, and our regular-ish little girl has reemerged.  What most people find to be ordinary, we now find extraordinary.  Her fighter blood counts were so high we were able to do crazy things like go to the grocery store!  We got ice cream one day, and went to a park – WITH other children!  We sat at the dinner table together and shared a meal where Lulu actually ATE!  It was only yogurt and one bite of chicken, but we could have been dining at The Four Seasons, it felt so good.  I had a business meeting that I’m not sure how it went, but who cares!  It was a normal thing to do, something I haven’t done in 6 months.  I met a good friend who is going through a hard time and I was able to listen to someone else’s problems. Wonderful! My dad is in town and we actually went out on not one, but two dates!  I mean, come on, this is pure gluttony.

The icing on the cake was a visit to Lulu’s K4 class.  She had only attended for 2 months before her diagnosis, but her school has been surrounding us with love ever since.  When we entered the classroom, a hush fell over the room.  The kids were lovingly and cautiously instructed not to touch her due to exposing her to germs.  We hadn’t been able to tell the teachers of her improved status for this week.  Lulu was beyond excited, bouncing up and down, overwhelmed into smiling silence and eyes so happy they squeezed almost shut.  Gingerly, the little ones approached.  Jimmy, my dad and I watched from a distance, letting go of any control over the situation.  One little dark-haired boy came up to her and quietly said, “Hi Lulu, you look just beautiful”.  Wow, thank you God.  The kids were curious, but completely respectful.  I wanted to grab each one of them and squeeze their little cheeks off, then send a letter to their parents thanking them for raising such gems.  Her principle read a story to her class as Jimmy and I held hands, being sure to keep the other hand free to wipe the tears that were escaping rapidly.

Yes, Normal is relative. I remember when Lulu had an undiagnosed ruptured appendix on top of her leukemia, which caused her excruciating pain and multiple surgeries.  There were times when we thought to ourselves: can’t she just have normal shitty cancer?   Bo, a boy we met in the hospital during this time, is one of the sweetest, most kind-hearted boys I’ve ever met.  He was recently given his walking papers; remission.   He rang the bell at clinic, meaning his fight is over, he’s won, and his new normal can finally begin.  We felt lucky to be there that day.  He had adopted Lulu when she was at her worst.  Bo saw the little fighter in her, and just took to her, even when she was too sick to even know he was there.  He’s been her big brother from down the hall, making her little presents and always keeping her in his prayers.  Bo just celebrated his 13th birthday yesterday, and his present?  He found out his leukemia is back.  Please pray for him and his family. Normal has now moved into divine.

-and, Hey Normal, we know we only have you committed for two more days, but please stay for a while… and visit Children’s often.

A.L.L. of Us

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  1. When it feels like life can be ganging up on us, normal is highly underated. I hold you in my heart of prayer. May you and Lulu know a whole lot more normal. I subscribed to your blog so that I can follow the story. Love and good will to you.

  2. Thank you for taking the time to comment, and follow our journey. You write beautifully, and.I will be sure to read much more. Blessings to you.

  3. annika johnson

     /  May 6, 2012

    OH T!!!!! This was absolutely AMAZING!!!!!! You shared this when i was waiting in the 3rd floor waiting room while Bo was getting a lumbar puncture & Bone marrow aspirate and a 2nd line for his PICC access, and there was absolutely NOBODY in there with me, not even the receptionist! After a handful of tissues, I finally got through it! You are so right about Normal. I love everything different and weird, just as you, but I NOW, after the first 4rounds of chemo, LOVE Normal. Thank you zoo much for the beautiful letter, and for the wonderful compliments on Bo. He is my hero. Love you & your family, love your strength, and most of all love that little LULU!

    • Oh Annika! I’m sorry you were there alone. I’ve been there after even the receptionist leaves. It always pisses me off a bit, that NO one is there to tell you the second your child is out of surgery and ok. I’m glad my post found you then. I’d been up in tears for you, knowing what you must be going through. Our prayers continue for both of you.

  4. Linda

     /  May 6, 2012

    This entry made me cry. A happy cry for Lulu and your family blessed with a week of normal. A sad cry for Bo, who starts the fight again. Your blessing for Normal to visit those at Children’s often was a beautiful gift.

    • Gosh, it was a bittersweet couple of dats Linda. So happy to see Lu doing so well, then learning of Bo, then Kate who was struggling for her life the last couple of days after doing so well herself. I don’t know how you do your job, but thank you so much for doing it. And so well.

  5. Carol Curley

     /  May 6, 2012

    You and your family are so inspirational to me. I am inspired to try and tap into the strength in myself that you all posess. Thank You for sharing your journey, I wish I could be of more help to you.

    • Thanks Carol, you are a mighty strong woman yourself! You’ve been through the ringer and continue to come out the other side. Keep going, and find the others in your life who continue to support you on your path.

  6. Thank you for sharing your story. I wish you and your family all the very best in your fight.

    • Pete, Thank you for taking the time to read and comment.  I look forward to reading your writing progress and really like the way you’re chronicling it.

  7. Jenni Madson

     /  May 7, 2012

    Solomon was all talk about seeing Lucia last week. It was all he could talk about Thursday night when I picked him up that she was coming on Friday. Then on Friday he couldn’t stop talking about her & how nice it was to see her. I’m so glad she was able to visit the class – they definitely miss her and talk about her a lot!! Here’s to many more normal days for you all!! Love & Hugs from our family to yours!

    • Jenni, you have to see the picture my husband took from the visit, it’s priceless. I’m still feeling so moved by the visit, and the way the kids reacted. Thank you for your thoughtful message.

  8. Amy L

     /  May 8, 2012

    Whenever I read your writing T I am filled with emotion and feel grounded in connection to life. You tap into that in so many varied ways. Thanks for your bravery in honestly sharing your experiences. To Annika and to you, remember you are really never alone. I was wondering if I had read your blog about Bo at the same time Annika sat alone reading it and I was thinking of Bo, this boy I don’t know. So, at the moment in time, she was not alone in her worry and love for him. What a gift this blog is! As for your little Buddha child sitting amongst her peers at school with her squinty eyed smiled from ear to ear. I love it!

    • Amy, you’re so wonderful. Comments like yours, Annika’s and others have made me feel like this blog was really the right thing to do, even if it’s hard sometimes.
      – and it’s a great reminder that we are never alone, even when it feels as if we are …

  9. Tricia O'Connell

     /  May 23, 2012

    T, thanks for the inspiring words about the new normal. I definitely have a new appreciation of what it means to value the everyday now. Keep on fighting, and all my best to Lulu and the family!



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