Roller Coaster life

Hello everyone! I wanted to thank you all for your prayers and support...I don't know how to respond to the comments on the blog page (like I said, I am all new to this) so thank you!
     Boy, was yesterday a surprise to us! We prepared ourselves and our minds for a week of hospitalization and the start of 2 new chemos and to our surprise we got there and when the blood work came back they sent us home because Michaela's counts were too low. So the plan is now to do this all over again starting this Monday.
    Our trip down to the hospital yesterday was interesting. Michaela and I had great conversation about God and why He allows things to go on when He can stop it. She had mentioned yesterday that she is tired of seeing the huge Geisinger sign. She is getting so tired and fed up. At the hospital they have a bell that kids can ring when there treatments are all over. The other day when we were there a little boy got to ring it. Michaela was so happy for him but then tears started to roll down her face and she looked at Kirk and I and said.."I will probably never see that day when I can ring the bell". Our hearts broke. What do you say when the doctors say this will probably be the rest of her life on and off. I know our God is bigger and He can heal...so why? Why doesn't He? This is the question that Michaela has been asking of us as of lately. It's a question that we all as adults don't understand either. I tried to explain that God uses our trials to teach us things and to be able to help others through. I can say this but I am not my daughter who is 12 and never known a day in her life without medication and hospitalizations.
    Michaela was born with TEF which is where the esophagus is not connected and the bottom part of esophagus is attached to the trachea so every time she breathes air went into her stomach. So first step of surgery was to put a whole in her stomach to let air out and then to repair esophagus and trachea. With this came many appointments and hospitalizations with food getting stuck and esophagus narrowing. This caused severe acid reflux which she needed surgery to repair it. The optic glioma she has in her brain has caused loss of vision, depth perception, lack of growth hormone in which the past 3 years she has had surgery to put in an implant to help with that. She has hypothyroidism due to the tumor and with the more recent brain stem glioma she has had lots of neurological issues. She has troubles comprehending and processing due to the growths in her brain.
     But yet....she always tries to keep a smile on her face and thinks of others before herself.

     So back to the question...why? I find myself saying "I don't know" an awful lot these days..I have teased with my husband and dad that I'm going to get a shirt with this saying printed on the front.
   Why does the God who holds the universe and can heal in an instant, why oh why doesn't He.
   I don't understand and will never until I get to Heaven and then it wont matter anyway...but, this I know that I have learned a lot in these years of our trials..I was always a weak person, timid and very shy but I have learned that I do have strength through Jesus. Our children are lended to us by God...They are His really and the scripture says in Jeremiah 29:11 For I know the plans I have for you declares the Lord, plans to prosper and NOT to harm..plans for a future and hope. Everything has a purpose and like I told Michaela yesterday..we can take our trial and let them role us or we can make something good come from all the bad. The enemy wants to destroy our spirits and have us angry and bitter at each other and God and he will do anything to make that happen. Things in life will happen wether you know God or don't. I'd much rather have that hope in  a higher power..my Jesus than no hope at all and I would much rather keep loving God and know His peace than get angry and bitter and have no peace. When we follow God His promise is He will work all things out for the good for those that LOVE Him. I question, my husband questions, our kids question at times and ask why but we will stand firm til the end no matter what comes because Jesus won the fight and because we are His children we will receive the outcome of the win.
   I have decided to pray that God would show each of us and especially our children how real He is and that there is a plan and purpose for all that comes our way.
   Again, my desire as I do this blog is to keep family and friends updated on our family and most of all my desire is to be real and share the struggles of living a christian life through trials but be able to show the faithfulness of God through it all! I remember when we were pastoring and Michaela was first born and we had a hard time dealing with the health issues then a person had come to me and said..." You have to not cry, you have to be strong..your a pastor's wife and everyone will be looking at you" Well, I am here to say that Pastor's and their wives are human beings like everyone else and I don't want anyone to ever feel like I did at that point in my life! Like I said before, We are not always positive and we have down days but you have to fight to get back up and keep running the race because the end is sweet!