Worth the Worry – FMF

I am joining the Five Minute Friday writing community this week.  If you have not visited or participated in this community, I encourage you to give it a look.  It is really supportive, instructive and inspirational!

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This week’s prompt is “worth”.  At first I wasn’t sure what I was going to write about, but now it is there and ready to pour out.  So, here goes:

Is it worth the worry and pain and suffering?

I can’t tell you how many times I asked this question as I sat at my infant daughter’s bedside in a Pediatric Intensive Care Unit and then a Cardiovascular Intensive Care Unit. For months, I sat and watched her as she dealt with IV lines being placed and taken out and put somewhere else in her tiny, tiny body.  As I watched a ventilator breathe for her and her only signal of pain and suffering being her blood pressure because of her inability to cry out or complain.  And I wondered…is it going to be worth it?  Am I putting her through all of this only to come out with more pain and suffering?

You see, there are no guarantees when your child has a heart problem.  We were put on the transplant list, but even then, the result is questionable and could be short term.  But, something told me that it was going to all be worth it.  That any amount of worry and pain and suffering was worth having this little girl with us.  Whether that time was short or long, it would be worth it.  I knew that for myself.  But, sometimes I questioned whether I was projecting something on to this baby that she didn’t want or need.  So, I had to put it in God’s hands.  And when a heart came for her less than one month after she was listed, I knew that God had spoken.  This little girl was worth all of this to Him.

We are now nearing eight years post-transplant (a couple of weeks away) and she is a beautiful, thoughtful, funny, anxious, loving daughter.  In those eight years, we have had many things to worry about.  She has suffered through a lot of painful procedures and scary events.  But, she has not only lived and loved but thrived.  And I am thankful every day for God giving us this chance to worry and feel pain and to suffer for such a long period of time. I hope that He will give her many more years with us, but I know that even if it isn’t as long as I hope and pray for, that it was all worth it in the end.  She has changed me and changed her little corner of the world in so many ways.

Long term life after transplant is pretty typical now, with many going 20+ years before needing a new one.  Advances in medicine are happening every day that may lend us a hand in making her life even longer with the heart she currently has.  But, we just don’t know.  None of us really do, but for us, it is a little more apparent, a little more highlighted.  But, any anxiety I feel about the future is so worth it every time I look at her smiling face.

Kidwell Park June 2017

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I went a little over the five-minute mark.  But, it seemed worth it.  🙂

 

2 thoughts on “Worth the Worry – FMF

  1. Thanks for sharing your story. I’m sorry you and your daughter have had to go through so much but I’m glad she is doing well just now and that it was worth it. Beautiful photo! Visiting from FMF#9.

    Like

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