Saturday, May 11, 2013

17 months and counting

May 10th Kamryn turned 17 months old.  As I look back on her journey there have been times I didn't think we would make it this far.  While Kamryn was in the hospital,  Mike and I would take breaks to the local Target, I would look at the cute baby clothes and wonder if I was ever going to be able to buy her a new outfit or even diapers.  Much has changed since then, all though I don't have to buy her new clothes. (thank you April)  I can.

Earlier this week, Kamryn, Kjerstin and I went to my eye appointment.  Most of the time people comment on Kamryn's long eyelashes,  her long hair or her cuteness.  The gentleman in the waiting room commented instead on her personality.  She had displayed some stubbornness with as much charm as she could.  My comment to him was, "Yes this one may take some creative parenting." What he didn't know was the journey she has taken to be so charming.

Kjerstin encountered a situation where she was telling someone about Kamryn's heart transplant.  I asked her if it was hard for her to talk  or even tell someone about it. She told me no, and asked me the same question.  I find that it's difficult at times and then not in others.  The goal now is for her to become as regular as possible.  We will never be able to use the word "normal".  And is anyone normal anyway. 

I do believe the terrible twos are upon us.  This sweet little girl is good at temper tantrums.  It may be because for so long she has had someone to cater to her every need.  The word no has become her nemesis. With her increased activity comes boundaries.  The little sit down she had when she wasn't allowed to walk off the sidewalk was cute, but naughty at the same time. I will try to get a video the next time this happens. 

Please continue to pray for us.  Mike is doing his best to keep is afloat financially.  He is a wonderful husband and is doing all he can.
God has provided for us and will continue to do so. 

Luke 12
22 Then Jesus said to his disciples: “Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. 23 For life is more than food, and the body more than clothes. 24 Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! 25 Who of you by worrying can add a single hour to your life[b]? 26 Since you cannot do this very little thing, why do you worry about the rest?

27 “Consider how the wild flowers grow. They do not labor or spin. Yet I tell you, not even Solomon in all his splendor was dressed like one of these. 28 If that is how God clothes the grass of the field, which is here today, and tomorrow is thrown into the fire, how much more will he clothe you—you of little faith! 29 And do not set your heart on what you will eat or drink; do not worry about it. 30 For the pagan world runs after all such things, and your Father knows that you need them. 31 But seek his kingdom, and these things will be given to you as well...

For where your treasure is, there your heart will be also.


  1. For me it is hard to look back and see the pain and fear we were all in wondering what was going to happen next, but it is not hard for me to tell people about kamryns journey because it is just that, something she went through, something that changed a lot of peoples lives in one way or another. And its not hard to talk about her journey because I want everyone I come into contact with to know how strong she is, and that I have the privledge of bieng her older sister, and that I have an incredible woman who is full of courage and strength and hope and I get to be her daughter. So every chance I get to I talk about you two. Sometimes I do it by accident but everyone I know has heard it atleast once. You are amazing.

  2. I identify with how sometimes its hard to talk about it and sometimes not. At this point I can usually say "My older brother Michael survived a brain tumor when he was younger so he has a few disabilities now" and it comes out naturally to preface whatever I'm saying, but every once in a while I or someone else will mention Michael or cancer or a sick child and that wound just feels so raw and I get choked up. It is so complicated being a sibling of a sick child. I was seeing this therapist for a while and she kept trying to get me to admit that I have anger towards and jealousy of Michael and I just don't (not that I would blame myself or any other sibling for that) but I do have a tremendous amount of sadness and guilt. Thanks to God, an incredibly strong and close family and a church community that just lifted us up when Michael was sick I have more feelings of peace, happiness and faith in Michael and God's plan for him that I do sad feelings, but it took a long while to get there and some days it still just hurts. I imagine the dynamic would be different if it had been Charity or Hillary, primarily because they're so much younger than me. Michael was my best buddy, we're less than two years apart, whereas with the blondies (and partially because of Michael's cancer and my role in our family) I had almost a more maternal role with them. I taught them things that Michael had taught me and that I had to again teach to Michael.

    I didn't mean to write so much, I just wanted to tell you and your family that in a lot of ways you still carry some open wounds, but I have peace with Michael's cancer that I thought was impossible even up the last few years. So like Kjerstin said you end up with an incredible story to tell about your sibling(s) and parents and all your family and church and community and it feels like an opportunity to share that with everyone you come into contact with.

    Always thinking of you guys! -Katie Hestead