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God’s WORD

Today has been a good day.  We had a wonderful morning of worship!  We had the opportunity to chat with several people which is always a treat.  Rachel and I went to get drinks after church and had the joy of several people asking how they could pray for us.  What a blessing to be prayed for!  One of them was our dentist.  As he was praying he kept reiterating that the Lord take away all of Rachel’s fear and to instill in her a heart of trust and dependance in the Lord.  Also, that the Lord would use every part of CF to glorify himself and bring Rachel’s heart ever so close to Him through it all.  He prayed several times for her to be fearless and brave (thought that was fitting since our shirts once we finally get a design =) will say FEARLESS on them).  When our dentist was done, Rachel had tears, I had tears, and our dentist all had tears in our eyes.  It was a reminder of the burden that we carry sometimes with cf that we don’t even know until it is brought before the THRONE.  I clearly saw and felt the pain and worry that was present in my baby girl this morning over the unknown of the next few weeks.  My heart hurts deeply for her, and yet, it was also a reminder again that God allows our pain and uncomfortableness to draw us near to Him and to be used BY HIM!

We had a cheerful car ride on the way home as we did not have anything pressing for the day, which was a HUGE blessing considering we have just finished FIVE months of basketball and volleyball seasons.  On the way home my husband and I were talking about the week ahead and I casually mentioned that we would need to be up early on Tuesday for Rachel’s appointment.  I asked if he for sure had that day off.  He responded with, “I have something at work that I can not get out of.  I had to sign up over 6 weeks ago.”  My heart instantly fell.  Tears quickly sprung to my eyes.  ALONE…AGAIN!  As much as my husband is amazing and is truly in so much of Rachel’s care, there are lots of times that he simply has to work and can not be there for every appointment.  This last year and a half of study appointments has been difficult in that regard.  And, while I totally understood that work is important, this…THIS was a big appointment.  Knowing that Rachel has to do a upper GI and then meet with the surgeon later in the day, I DID NOT, DO NOT want to do this one by myself!  My heart was CRUSHED that I again had to go it alone.  This appointment has the potential to be SO HARD.

Back story.  When Rachel was almost four she had to have an upper GI done for some bowel issues that she was having.  I went alone not thinking too much of it.  I had an upper GI when  I was in college and while it wasn’t pleasant, I had apparently tried to erase all thoughts of it.  So walking in with Rachel, they handed her the liquid and she took one look at it, put it to her lips and then refused to even remotely be persuaded to try it.   So the nurse told me to hold her down (not really explaining much) and proceeded to stick an ng tube in my baby girl’s nose.  Rachel was thrashing and fighting with everything that she had while I held her down to allow the nurse to “get the procedure done”.  Tears, sweat, frustration and terror were present…in both of us. We both left that appointment a MESS!!!  I swore that day that I would never. EVER. EVER hold my child down for another procedure.

So, today we are pressing forward to Tuesday.  I have tried to show Rachel pictures of what was going to happen, and what will be expected of her.  I have also explained that she doesn’t really have a choice with having this procedure, but she will have a choice if she does it orally or if she must have the ng tube put in again.  She remembers that appointment and she is scared.  I was so hopeful that Dad was going to be there to be both of our strength.  So today when he told me that was not possible, it was hard to not feel like Rachel and I were on our own.





Another side note.  Rachel has been working on a quilt that she wants to take the hospital with her.  Her “power cf quilt”.  One side is purple with fun squares.  The center square is a quilt block I found in my mom’s various tubs of quilt items.  It was purple and a butterfly and I grabbed it thinking Rachel might think it was neat (in the cf world people often reference wings and lungs together).  Well, she absolutely LOVED it.  So we put that block into the quilt.  Rachel has been amazed at the backside of the quilt and how it looks a mess.  I keep telling her that it must be similar to our lives.  Our lives look like a mess of different things, but together God makes something remarkable out of our lives. (My mom used to tell me that all of the time!  One of the reasons she loved quilts so much!) The other side of the quilt is full of purple owls that I found for her.  I explained that she could look at and be able to remember “I’ll be brave”,  “I’ll be courageous”.  Fun idea.  BUT, it has gotten even better.  A sweet family friend, helped me renew a bit of creativity with the quilt and she encouraged me to add some white space for people to sign or leave encouragement for Rachel.

So back to my downcast spirit upon walking into my house after church.  The tears and burden felt 100 times heavier knowing that my sweet hubby and Rock would not be able to be there with us on Tuesday.  So after a good long “feel sorry for myself cry”, not only for myself, but more so for my sweet girl.  Wishing with all of my heart that she did not need to be a FEARLESS WARRIOR so often!  Anyway, I went down stairs and began thinking about what we would put on Rachel’s quilt.  I googled some ideas, and verses and then wrote down each one on paper for Rachel to read and assess.  Funny how God’s word works isn’t it????  I ended up spending hours and HOURS today reading, rereading and meditating on His powerful words.  All in an effort to make a vinyl cut out (kind of like an iron on t-shirt material, only I cut it out on my Cricut machine) to put on Rachel’s quilt.  My Precious Lord reminded me over, and over today that He is ALWAYS with me.  Do not fear!!

Rachel finally settled on five verses to put on her quilt.

Jeremiah 29:11  For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Isaiah 41:10 So do not fear, for I am with you;  do not be dismayed, for I am your God.  I will strengthen you and help you;
I will uphold you with my righteous right hand.

Psalms 116:2 Because he bends down to listen, I will pray as long as I have breathe.

Luke 1:37 37 For nothing will be impossible with God.”

Psalms 139:9 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.


Now I would be lying if I said that I was not still worried for my girl, and trying desperately to protect my own mama’s heart knowing that we have some tough stuff coming at her in the next few weeks (drinking barium, the feeding tube, and the possibility of her first two week tune up stay in the hospital).  But, I do know that My GOD listen to the cries of the broken hearted… and anyone that has endured illness, sickness or loss understands that broken heart.  But, tonight I KNOW that my Savior walks with me.  I know that He is working out the best for me (and Rachel) and will shine His glory through it all.  I am thankful tonight for the time of reflection on God’s word.  It is simply  more powerful than anything that I know!  It restores the soul and is salve to the  spirit!

As far as Tuesday goes, I know my sweet husband will be there with us in spirit and will be upholding us to the King of Kings, I am also asking for others to pray for my girl and for me.  God is faithful and good and because of that truth…NOTHING IS IMPOSSIBLE WITH Him…even swallowing yucky bariu!!! 


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