sometimes it’s hard to understand

In my life, I have not been immune to personal tragedy.  Somehow through it all I have managed to come through with a positive outlook (although in some cases it took time… a lot of time).  Today I received notice of another person’s personal story, and my heart is breaking for them.

Last spring I was in a Bible study with a lovely lady I will call Mary.  She was one of the older ladies in our small group, and every week she had some bit of wisdom or advice that really blessed my personal walk with God.  During the course of the study she shared with us a prayer request, for her precious granddaughter who was not even one yet.  This sweet baby had been diagnosed with sagittal craniosynostotis right before her first birthday.  She was taken to Children’s Hospital in Chicago to undergo further testing because the drs. thought there might be more, and there was.  She was diagnosed with MPS type I.   This is a rare genetic recessive disorder in which the body cannot break down saccarides.  They build up in all of the bodies cells, and cause serious damage, and usually premature fatality.  For more details on MPS (Hurler Syndrome) see

So, “Mary’s” granddaughter began a long series of treatments in Chicago including enzyme replacement therapy (which did not work the first time around), and chemo. to kill off the cells in her body that would fight the new enzymes.   Although the first treatment did not work, this sweet baby has been progressing fairly well.  Physical therapy, and her mom’s ability to be with her constantly had helped out a lot.  Recently though, she has not been doing so well.  She’s been running a high temperature (not below 104 degrees), has a ferocious diaper rash (causing so much pain that she had to be put on a morphine pump), she had to be given a feeding tube, and as of this morning, she stopped breathing and has been put on a ventilator.

When I read the email concerning this newest update, I just started to cry, like I am now just thinking about it.  I have two children, one of whom is not that much younger that this baby.  Although I do believe firmly in Romans 8:28 that God works all things for the best for those who love him, I was having a difficult time understanding how this chain of events could possibly be for the best, for anyone.  Then, after being quiet before the Lord and listening, I realized, that when He is working things for our best, it is because it is HIS best.  I many not understand everything that goes on in this world, and there may be times when I question God’s motivation for letting certain events happen. But ultimately I know that His BEST will WILL be accomplished. 

Now, does all of this mean that I think that God ALLOWS evil in the world, and that He’s okay with it?  Or does it mean that since God’s got everything under control that I have to role in His plan?  Nope, in both cases.

I believe that God’s heart breaks for the world He sees now.  It wasn’t supposed to be like this in the beginning, but, that’s what sin has done to it.  I do believe that He is able to accomplish His purposes even with sin in the world, it just doesn’t look like what it would have before.  I also believe that he has called us as His created to act in the world to help accomplish His plan.  Does God NEED me to do anything?  Heck no!  He breathed life into Adam, He can take care of things however and whenever He wants to.  But, He chose  to allow me to participate… and how amazing is that!  How do I do that?  By praying, by being still before Him and listening for His voice, by acting according to His will. 

So, where does that leave me with this heartbreaking story about an innocent child?  It leaves me on my knees.  I hope, and I pray that healing will come to her.  But I know that if earthly healing is not for her, eternal healing is, and I will look forward to meeting her when I receive my inheritance as well.

2 Comments on “sometimes it’s hard to understand”

  1. Pingback: update on baby Hannah « The Evolution of Me

  2. Pingback: MPS Awareness Day « The Evolution of Me

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