Tuesday, November 29, 2011


I never have been too sure what "normal" means. Is it the same thing as average? Statistically speaking, is it a median, a mean or a mode? Is it supposed to be the way I feel most of the time, or just a general lack of happiness or sadness? You know, just that middle state of grey. Regardless of what normal is supposed to mean, it keeps popping up. People ask if we are getting back to normal. Typically, I just shrug.

Some things are back to the way they were pre-sickness, and so that's great. Malorie has had a great week back home - she is eating healthy, full meals, which she didn't do for a long time. Her energy is back up to around where it was before she initially went downhill, and we see no deficiencies in her cognition, speech or mobility. She's has no issues with vomiting or constipation, and is completely off of her laxative that the doctors said she would likely need to keep her intestines moving. She is still a little bit ginger in her movements, slower than before, but I think that is just the recovery from her surgery. She is also still pretty sensitive around anyone other than her mother and me, and Mal has also gotten very demanding, which is something Rachel and I keep saying we will work on, but then we just give in to her. Mal's swelling along her incision where the tumor was is still worrisome to us, but the doctors say it is normal and will take another week to two weeks to go down. She and Micah are still two peas in a pod.

During the days, Rachel and I have resumed what I guess I would call "normal" activities. Rachel is back into parenting mode; teaching and playing and being a great wife and mother like always. I have gone back to work for the time being, and am filling my days with thoughts of airplanes and submarines. But then once the kids are in bed, the nights get a bit rough. We start to think about how difficult the next few weeks are going to be, and it gets tough to keep a positive outlook. The sadness and worry are palpable.

I think Rachel and I are both struggling with how to come to grips with the fact that Malorie may still have malignant cells growing in her body. We try our best to cast our anxiety to the heavens, but we still find ourselves dwelling on the upcoming scans to test for spinal tumors and cancer cells in Mal's cerebral-spinal fluid. We have both avoided calling family and friends because we get exhausted from talking about it...thinking about it...living it. Tonight, we realized that Mal will not be able to eat breakfast for 6 straight weeks during radiation, because she will be anesthetized daily. We have to figure out how we will feed Micah without Malorie wondering why she isn't allowed to eat or drink in the mornings. Breakfast is typically a minor detail. Now it feels overwhelming, sad, troublesome.

So, no, I guess things aren't normal, per se. Things are good right now, but they are good with an asterisk. It is like that summer day that is spent bracing for a terrible storm that is approaching. No matter how nice things are now, we know it will not remain for long, so we make the best of the situation. While we may feel average, like things are neither great nor terrible, we know there is still a fight looming. We are not back to normal. But I can't wait to say that we are once again normal... whatever that means.


  1. It's GREAT to see Mal smiling! And to hear how well she's recovering with no deficiencies. I understand the exhaustion of "living" the diagnosis, as an adult, and can only imagine what living this is like for the parents of a 2 year old who cannot comprehend what is going on. I totally support not making phone calls, etc. These blog updates are very generous of you to give to us.
    In all my prayers for all of you, I include asking for His strength to be with you day by day, hour by hour, minute by minute. much love.

  2. When I was in the hospital yearning for "normal" and wondering if I'd ever see it again, a friend gave me a book by Patsy Clairmont (a Christian humorist) titled Normal Is Just A Setting On Your Dryer. That book not only made me laugh but reminded me that my perspective on life and "normality" had changed--forever. And it was okay that it had changed. Because the heart of my love for the most important things--my husband, son, family, Lord--had not changed. I still had foundation in those, and that is where I chose to stand. Grateful that your days have held moments of sweetness and thanksgiving.

  3. i don't know what to say other than we love you all so very much. we love you and we're here for you whenever you need us.

  4. I love seeing your thanksgiving pictures and smiles on all of your faces. I hate that your normal will always have an asterisk beside it... i understand that all too well. Praying for all of you and sending love from Georgia :)

  5. You have been and will continue to be in my prayers. (P.S. Swear I'm not a random...I'm a friend of My Bottle's Up)

  6. I am glad you are able to spend time together as a family. You will hear the worry about upcoming scans be called "scan-anxiety" by other oncology families. I wish I had advice on how to take worry about, but as parents that is what we do- it looks like you are doing a great job keeping the worry off of mal though.
    Whenever Luke had sedation we would get him up for a late night pancake dinner. That way he wouldn't skip a meal- we were always worried about his weight and appetite. It seemed to help and then we weren't dealing with as hungry of a toddler in the morning.
    You all continue to be in our family's thoughts and prayers...

  7. Your posts are beautifully written and convey such deep, raw emotion. Thank you for sharing your story. It speaks directly to my heart and I weep for you. I'm new to your blog, but unfortunately not new to the roller-coaster that is having a child with cancer. My son was diagnosed on Halloween 2010 with a very rare lung cancer. He is now cancer-free and we just had our 3-month scans - all clear. I know all too well the anxiety, the frustrations, the asterisk of normal. I also remember the fear, the deep sadness, and the worry about even "normal" things like eating, sleeping, and going to the bathroom. We made it through and you will too. Accept help, enjoy the down-time, and be strong through the rough times. We are not out of the woods yet (2 years of scans every three months) but we are on our way. I just want to let you know that there is light at the end of this tunnel. And there are others who will walk through it with you. If you ever feel like reading or need support from someone who's "been there", you can check out caringbridge.org/visit/ryanshope
    My prayers are with you and your family.