Wednesday, March 2, 2011

March 2

Recovery is slower this time. I feel like I was much more active by this point last time. We did manage a short walk today, which is great because the weather is gorgeous and it’s good for the baby to be outside.  It’s really been very considerate of the weather to be so nice while I’m home and save the dreary, cold, snowy days for when I’m in the hospital. The sunshine and warmer weather does a lot to lift spirits and reinforce positivity, and for that I am thankful. Basically I’m just very tired and insanely itchy with my skin peeling off of my face, neck, chest, and back. Otherwise all is well and I’m glad to have this time at home. Waiting for a month to find out if the IL-2 is working is going to be difficult. I’d much rather know right now.  I’m trying to cherish this time of healing and not wish it away to be closer to finding out the results.  As I have said, I am not a patient person.  But as they say: good things come to those who wait. So wait I will, and I will be confident in the good news we are about to receive. I am still convinced that the scan is going to show that the tumors have completely disappeared. I know statistics scream otherwise, but I’m not a statistic, I am a person, I am a warrior, I am a determined mother. Cancer, you may prove a worthy opponent, but you are no match for me.
I have put away all of my parenting books (and if you know me, you can guess there is a substantial amount). If I am a unique person who isn’t going to go by the books, then so is baby Kai. Goodbye scheduling feeding times, goodbye stringent rules about naptime, goodbye always putting the baby down before he’s asleep, goodbye not rocking the baby to bed, goodbye everything except enormous Kai smiles and the overall happiness of my little person. I don’t care if you need to be rocked to sleep every night for the next few months. I don’t care if you use a pacifier until you’re 2 years old. I don’t care if you nap in your swing or your crib. I care that you turn into a happy, content, confident, secure individual and I will use your smiles, not the clock, as my gauge of success.  If I put as much weight on melanoma statistics as I was putting on child development statistics (by month 1 80 percent of babies will be…  by month 2 80 percent of babies will be…), then  I would have a much more difficult time getting out of bed each morning. I wouldn’t be able to greet each day with the confidence that my body is unique and as such is waging a war that you will not find in any medical journal, personal story, or research statistic. So as I attend to my own unique needs, I promise to do the same for baby Kai. I will listen to your unique wants and desires. I will respond to you as a little person, not as a developmental stage, and I will remember that your life cannot be defined by a book or a statistic.  And I will stockpile each huge, toothless, ear-to-ear smile to be used in my assault against melanoma. Your love is my greatest weapon of all.
I am learning how to breathe on this journey. I am learning to stop, take a deep breath, and relook at the situation.  I am learning to relax, let things go, and be more flexible. I am allowing for setbacks, for last-minute schedule changes, for improvisation.  I look forward to the uniqueness of each day, the joy of impromptu occurrences, and the promise of tomorrow. I am learning to see life as a marvelous roller coaster that I cannot always control, or plan for, or contain.  I am learning to be swept up and carried along, sometimes with a paddle and sometimes without, and either way with a great big smile on my face for the awesomeness of the ride. I am learning to sit still until everything falls away and only love remains. I am thankful for this breathing lesson, because I have a tendency to suffocate myself.
Today I am thankful for the gorgeous weather; the continued, humbling support of our wonderful neighbors; upcoming visits from friends; my time at home with baby Kai; my mom for taking care of all of us; my loving MMG family; the doctors who continue to grow my cells while I rest; my amazing family and friends; and, as always, my fabulous husband Jeff, who is stuck with all of the night feedings this week, and my precious baby Kai. The debt I owe you can only be repaid with my life, and I promise you now that I will always be in yours.


  1. If it means anything... I never followed the parenting books (as you know have always marched to my own beat) and Jack is growing up to be the most amazing person I have ever known!! We roll with the punches with lots of laughter, hugs and constant 'I love you's':)

    "You know, when I was nineteen, Grandpa took me on a roller coaster. I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it."~from the movie Parenthood

  2. Amazing--the wisdom of a grandparent from someone who has only been a parent for a few months!! You are definitely a quick study!

  3. Just wanted you to know that I think about you guys everyday. Your fight, strength and courage is absolutely amazing. You are such an inspiration and I personally am learning a lot about myself and life in general as I read your blog daily. There are so many things that just are not worth the stress and worry that we tend to focus on.

    I too use to read those books all the time when Jake was born comparing him to what others his age were doing. Then one day I was like screw it, he is his own person and he will do things at his pace. He has been great so far. I have been letting Madison lead the way since she was born and everything has been going good with her as well.

    Stick with your instincts and let Kai lead the way. He will continue to be as perfect as he is right now.

  4. Hey Jamie,
    Now you're talking!!
    You thought you were enjoying Kai before? With those books back on the shelf you are going to enjoy him, and yourself as a Mom, in a whole new wonderful way. When you follow your heart and your "gut instincts" you will handle things in a more content and natural way. When your body is content, Kai will sense that and unless he has an extreme need (he's male so think food, diaper or snugglin'... ok, kidding a little bit here :-) he will react in kind.
    There will be times when you want some advice or additional information before making your own decisions. Instead of books, go to other Moms or better yet Grandmothers. Knowledge is power and most Grandmothers have it, BUT the most experienced ones also have the wisdom to not share unless asked...
    As always lots of hugs and love, Judy

  5. ...or the pacifier until he's three isn't bad either (ehem! perhaps speaking from experience?!)

    Glad you're making the most of motherhood. Continue healing and snuggling - they go hand in hand!
    Love ya and hope to see you guys soon, Sharron

  6. I concur about the pacifier or dee-dee in our household. Weston literally would slip it to the side of his mouth and talk with it in there. I think he was 3 when we "donated them to the new babies". He sees photos of him with it and says "mom, look, someone put Ava's dee-dee in my mouth!" Ava was the same, gave hers to the pacifier fairy at 3.

    Your grace and wisdom continues to amaze me. You keep resting and let your body heal - how would some fresh baked scones sound? I would love to see you. Sending a big cyber hug.


  8. Hi Jamie, had some trouble with my computer and lost some things. Now back to almost "normal" Soooooooooo good to hear you being so positive and moving forward with your strong desire to BEAT your nemesis. I'll bet Jeff is enjoying the feedings more than you imagine. He certainly has been a strong support for you through all of your trials. Hang in there, champ! God bless

  9. That's the ticket!! Enjoy every breath he takes because he will grow fast. My mother told me when I was pregnant with my one and only to enjoy every moment and not wish any of them away. I am so glad I listened to my mum. I have enjoyed every moment of her life, even the challenging teen years because I made sure of it. A friend always asks, do you want to be right or do you want to be in relationship? It has kept the fights to a bare minimum.

    You continue to be in my prayers.

  10. Jamie, just wanted you to know that you were in my thoughts. Hope you are feeling a bit better from your treatment. And I'm sure you are enjoying your baby boy!


  11. Jamie, I just found out about what has been happening for you. We were on a vacation and just returned last night. Your Mom has shared your blog with all of us in our Peace group. When I was diagnosed I never gave it the "C" word --always called it Prunie, helps to reduce fear. You certainly have already done that in your courageous journey to heal!! I am keeping you in my heart and meditations. You will be fine--believe and know it!! You are amazing and thanks for sharing your journey! With love Jane