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God is my Joy and Hope

First of all let me start by saying sorry that I have not been too good the last month with my blog.  I have really wanted to get some thoughts and ideas in print, but…life has been more pressing than the need to write.  Many of you know that the main reason that I blog is so that I can reflect on God’s goodness and provisions throughout this crazy time we call life.  In and through writing I find joy as I reflect upon the trials and ways that God faithfully leads me.  So today…I will make an effort to praise and reflect on the last few weeks.

The last month I have felt a great need to be grateful for the quiet times (health wise-quiet doesn’t happen too often literally with four precious kiddos).  Having a child with a serious life threatening disease it is difficult to just rest in the peace of the moment.  Many of you know that last year Rachel was sick from October to almost May non-stop.  It was a tough year for her.  However, since May she has only been on antibiotics 1 time.  As I have reflected on this fact, my heart begins to get heavy and worried.  God has faithfully reminded me that I need to be grateful always.  I have struggled, because I DO FEEL VERY BLESSED for the last few quiet months, however, it is not with out the constant worry that we need to be ready for the next go round with working to stomp CF.  I was feeling bad that somehow that was less grateful because of the foreboding feeling that I carry with me at all times.  This week I have come to terms with the fact that it is where we are.  I can be joyful in the calm, while still preparing my heart for the battle that continues to rage.

Of course God had a spiritual connection to this as well. Where does our hope and joy come from?  Is  it because of the absents of pain, trouble or difficulties?  NO!!!  It is despite these things that we find our hope in the Lord!  What an awesome reminder!

I have had two things that were hard to deal with this week.  One was that one of the promising CF drugs failed the last trial that they did (before it was to go to the patients). =(  What a heartbreak to have the hope that there would be a drug that would make life easier and longer for Rachel and others suffering with this terrible disease.  Reminder…God is in control and that my joy and hope is in HIM alone.  He knows the days that each of us will be here.  I don’t have to worry no drug, no special medicine or routine will be out of His hands.

The second thing is that we went to play with a friend earlier this week whose child seemed to have a cold.  I tried my best to keep my kiddos away, but…kinda hard.  Friday evening Shiloh sounded sick.  She is now definitely sick with a cold, sneezing, and a cough.  So-back to the worry and fear of what tomorrow holds for Rachel.  It seems once sickness enters our home, it is just a matter of time before Rachel gets it and then life goes upside down till she starts to get better. With our healthy children, they get sick and we cuddle and love on them a bit more, but there is not the great and intense emotions attached to their well being.  We know that most likely it is just a matter of time till they are better.  However with Rachel it is a different story.  I dread the long hours attached to her percussor or vest and nebulizers doing treatments every time I turn around. Or watching her struggle to keep her airways open from the thick mucus that attempts to try to choke her air supply.  I hate it!! I likened her sickness to a roller coaster that you are not sure how far down it  will go before it comes back up, or if there are wicked twists and turns that you are not quiet prepared for.  Then there is always the dreaded downhill to prepare for when it just keeps going downhill.  (I have watched other parents and young people with CF deal with this and it is tough to know that this is part of our reality too.)  It is just so hard to wonder about tomorrow or the difficulties of what next week will bring…  So I won’t, I will PRAY!!!  If you think to pray for Rachel, please do as well.  God provides all that we need, and we hold firm to that HOPE!

Anyhow, it is good to  recognize my feelings of joy and peace in today and to know that He is able.  Praying that Rachel’s body is strong enough to fight off Shiloh’s cold, and that God will continue to supply us with all that we need in each and every situation.  He is good and He is my hope.



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