A Beautiful End

While this childhood cancer experience is not for the faint of heart, and I would wish it upon no one, there are some things I would never change about it.  I thought the NICU gave me perspective, both my kids had a very real chance of not making it, I never forgot what one of the nurses said to me, it was foreshadowing in a way, she told me the NICU is not that sad, more babies make it than don’t, pediatrics is down right depressing, those parents go home, have dreams for their children then it all comes crashing down at 2 or 3 years old, at the time I thought what she said was cruel, how could she downplay what I was going through, and were that many kids really sick?  I had very real dreams for both my children at birth.  The early birth made me modify my dreams it made me the mother I am today, a much better mother with no expectations, rather celebrations for each and everything they can do, -and no pressure on any of us,  but she was so right, the whole you are the mom thing in the NICU is BS, you may be their feeding source, but in my opinion nothing more.  Connor, Claire and I fully bonded over the last three years, once they were home, I started having very real dreams for all of us, she was very right, pediatrics is much more depressing, there is no comparison.  No child should be inside the hospital, they should be outside playing, no child should die, they should outlive their parents.  So how can I at all be thankful for the situation we are in, I am not really, but their are certain things I am thankful for.  It is simple really, at 35 I have experienced so much, I know what is important, I know how I want to live, how I want to raise my daughter, many people go through life without an eye opening  experience, I hope I live long enough to take these lessons and make a difference, having experiences like this are how the world is changed for the better.  Having experiences like this make you more compassionate and kind than you ever could imagine, for that I am grateful because I will raise our other little human in this spirit.  Second it is the people we have met along the way, I am fortunate in while I am shy and don’t specialize in lots of friends, the ones I have are good ones, I can honestly say I have friends of 20+ years and some pushing 30, but nothing bonds you like the shared experience of childhood cancer, the families, all of them, are down right inspiring!  Today reminded me of how amazing they are, today in our room showed up a gift card for me to go to the spa here from a fellow cancer mom who signed it “a friend”.  Her daughter and Con were two of the brain kids up in Boston, they had the most similar cases in that they both had cancers that required high doses of radiation at very young ages and also required very high doses of chemo, so high both could not be done at the same time, all in hopes of a cure, I believe from the bottom of my heart Connor’s friend will be cured, and we will live through her.  This gift card floored me, this family is in the middle of their own crisis and thought of us, beyond thoughtful.  So on our last day of vacation we used part of this card for happy hour, C and C enjoyed chippees, while Mommy and Daddy enjoyed Margaritas!

 
What a perfect ending to a perfect vacation, we had so much more fun today, soaking up carefree family time!  Oh and the “wildlife” was plentiful today, lots of starfish, crabs and “baby crocodiles” to be found, Claire thinks everything is “cute” hate to break it to her that NO pets are in her future! 

  

  

  

  

  

  

  

  

  

  

  

    

  

  

  

  

  

  

  

  

  

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3 thoughts on “A Beautiful End

  1. Prefect pics for a perfect vacation time together. Love the pics of Connor soaking up the fun. Claire looks like she enjoyed her time, too. So glad you decided to do this. Thoughts and prayers always coming your way.

  2. These pictures are amazing.
    And I agree Erin. The NICU journey defined me and I had nightmares about them not coming home, but the reality of losing a child that calls me mommy and kisses his sister on the back when she’s mad is beyond comparison. Witnessing you all fight and live has without a doubt shaped us and how we want to parent. So you’re already on your way to changing other people and the world for the better.

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