flowers

Friday, June 15, 2012

Rejoice, I say

Rejoice in the Lord always; and again I say, Rejoice. 
 Philippians 4:4

Do you have those days when you know something is going to happen but your not sure if its going to be a good result?  I should rephrase that...the result being what YOU want it to be? 

I had one of those days on Thursday (6/14/12).  It was the first day of summer break for Emily and she starts it out by having to go to the doctor at the hospital.  This is one of those visits that you sit and pray that 1. we are not there all day and 2. that he will feel she is good enough to reduce some of her medication.   

This visit was a little different.  To some degree we were a little excited to go just because this was her first appointment at the new offices that were built right across the street from the hospital.  Parking was wonderful and easy, the people were friendly when greeting us and the process was flowing just smoothly.  We were called pretty quickly to go into the room and then the waiting game began!  Sitting there waiting anxiously for her doctor to come in, Emily and I sat and admired the new tables, chairs, the sink and even under counter lights!  It was all so new and fresh!  The view wasnt too bad from the windows.  Soon enough her doctor came in.  This is the most relaxed (surprisingly) that I have seen him.  

Each time we meet with him, I find that I learn something new about him.  We all know he is brilliant and the Lord has blessed my baby girl with a wonderful doctor but I learn new personal things about him.  You would think after seeing him on a regular basis (anywhere from every 2 months to every 6 months) for the last five years (yes...thats 5 years) that I would know everything there is to know about him.  WRONG!!!   I just learned this time that he has a child (at least one child) that is old enough to have made him a grandfather!  Really?  We have seen him for five years now and I just found this out!  Crazy to say the least.  What this does for me though, is I can relate to him on  a more personal level.  I now see him as more of a "person", a grandfather to some precious little child, instead of just this brilliant doctor that really used to talk over my head where I felt I need a medical dictionary just to know what he said to me. Its really amazing what you learn about people the longer your with them.

Anyway, back to the appointment.  So he looked her over and I talked with him about this cough Emily has had now for over a week.  I have been concerned but the fact that she hasnt been sick with it or no fevers I never took her to the doctor and waited to see him.  He felt it was more of an allergy cough which really put me at ease.  Then as he was finishing up the exam now came the time when I was to get all the prescriptions refilled.  As he started writing out the scripts he said the most beautiful words to me (us) ~ she can stop the steroids!  Really?  Did I hear right?  I questioned him again about what he just said (and yes, I did it again after that to make sure my ears were not fooling me).  So because she is now officially off the steroids (it would be exactly 2 years that she was put back on them in 2 weeks) she is now able to come off of 3 and possibly 4 medications she has been taking!  She is now just taking her chemo, baby aspirin and blood pressure!  The blood pressure will probably be taking away but we are just waiting for the phone call!  This was a huge answer to prayer and the outcome was a surprise really.  The outcome was what I had been praying for!  The outcome is a blessing!

Last night we went out to dinner where ever Emily wanted to go and then I also promised her I would take her to get her hair cut!  Her hair is just about long enough to donate it again so we are holding off just a little longer!  She will be starting school with a new haircut and she will be alot smaller!  I told her that people may not even recognize you!  She looks so much different when she is down to "regular size".   As I sit her and type this, eyes all watery, I am just so thankful to our God that hears our prayers, lifts us when we need to be carried, and heals!  He is our Healer!  

Even though Emily is now off most of her medication, I still have to remember though she is still a sick child and anything can trigger the disease to act up again.  Anything can set it off and start our tornado again.  I will still be protective of her and the environment but in it all, I know she is safe in His arms.  He will take care of her.  He is our God!  

So today, we are rejoicing!  we are praising His name! 

Monday, June 11, 2012

I'm waiting....

I know the answer to this question before I ask it, but have you ever waited for something?  Waited for someone? Waited for an answer or just sat and waited at the doctors office? We live in a society today where we want immediate answers and that makes waiting that much more difficult.

There is this song out called "While I'm Waiting" by John Waller.  This song was in the movie "Fireproof".  The first time I heard this son, I admit, I cried.  I felt like this song describes my (our) life with Emily and HLH!  Each time she has been in the hospital for an extended stay (more then just an overnight - IV treatment)....I feel like this is what we do...we wait.  We wait for test results, we wait for MRI's, CT scans...we just wait.   It is exhausting waiting.  We dont always get the answers we want...but that is life..right?

One thing I have learned during Emily's sickness is to have complete trust in God.  He is the one in control.  Yes, He has provided us with amazing doctors but at the same time they are not the real healers of Emily ~ God has just used them!  But during all this, there have been times where I have felt that we were waiting on God.    This song says it all...I WILL serve You while I wait.   I feel like we are still waiting on God...still waiting for Emily to be healed for good.  We may not see her complete healing on earth but the day we get to heaven...it will be a glorious day.  Not just to be able to see Jesus face to face or to see the hands and feet that were nailed to the cross but also because Emily WILL be healed for good then!   

While we wait on God...we still "run the race".  Our race is just living day-to-day with her disease.  Getting her medicine filled a few times a month, making sure she is taking her medicine, taking her to doctor appointments, learning when to be more aggressive in getting her to a doctor or to just let something go a little bit.  Learning to let her be an 8 year old kid but at the same time being aware of everything going on.  Learning to "re-cut the cord" and let go a little bit.  While I'm waiting, I will always serve my God.  I will always praise Him for what He has done.  When we deal with painful situations....i will continue to trust Him, praise Him and serve Him!

This song says it all.  I have no choice but to wait on Him.  He gives me peace in dealing with the disease and helping Emily.    

How do you think you would handle a situation without God by your side?  Would you have the peace and comfort knowing He is  in charge.  Would you be willing to wait on Him?  Would you still  serve Him, worship Him, be obedient, run the race while you wait?   I will!  I choose to serve while i wait!