Tuesday, April 12, 2011

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!

Thursday, April 7, 2011

New and unchartered territory for the Nagel's

This is all new to me..blogging and such. I have felt in my heart though as of lately that I need to do it and then a good friend of mine mentioned about starting a blog..so here I go. We are a close knit family of 6. My husband and I have been married for almost 17 years. We have been blessed by God with 4 beautiful children..Josiah 16, Michaela 12, Sarah 10, and Aunnah 7. We love our kids dearly and thank God for them every day!
What I want to blog about is the journey that we have been on since the birth of our daughter Michaela. We tried so hard after the birth of our son to have another child...after a little over a year we found out I was pregnant with our daughter Michaela. We were so excited for this new little life, but we were not expecting what was coming our way. You never think that anything bad is going to happen to you or your child when you are pregnant...that thought never crossed my mind or my husband's. The day came when it was time to deliver her..this beautiful child that God had gifted us with. The delivery was very hard and difficult but then she was here...a beautiful 6 pound 9 ounce baby girl.
Shortly after delivery I was nursing her and her lips and body started to turn blue..I called for a nurse and they ran in and took her from my arms...that was the start to her little body fighting for life. She was born with Trachea Esophageal Fistula. God blessed us with a wonderful surgeon who did surgery on her at 1 day old. My husband and I had to rush to the hospital where they were doing surgery on her and we remember seeing the surgeon for the first time...his large hands working on our little girl was impossible for us to comprehend! Five and a half hours later we were able to see our little precious girl. She had a chest tube, feeding tube and basically machines and tubes all over her. She was in the NICU for 2 1/2 weeks..it was such a roller coaster ride but finally the day came to when we could take her home. From that day forward is when we started finding so many other health issues that she was going to have to face.
You see Michaela also has a disease called Neurofibromatosis as well as 2 of her siblings. All three of our children who have this disease have had to undergo chemo therapy treatments due to tumors in their brains. Michaela has been the one hit the hardest with this though. She will be starting her 5th journey of chemo on April 11th. Her first journey with chemo was when she was only 18 months old and she has been on and off chemo treatments since then..all treatments have been outpatient until now. April 11th she will be going in for 5 days of chemo and this will take place every 3 weeks and every 2nd week she will be getting another chemo drug that is done in clinic.
I write all of this to let you know how we have found strength in all of this and that is through our Jesus! I am not saying we have never questioned His ways but I am saying that if it was not for Him...we would have given up by now. We don't know why and we don't understand at times and it is very difficult to look our children in the eyes and say that God has a plan just keep trusting, but we do and we do believe it! You see, God sees the whole picture and we are only seeing what is here and now. The God that made the universe has each of us in His hands and He cares about every aspect of our lives! Our family has learned many things through our trials and we will continue to pray that if it is not time yet for the healing of our children...please allow something good to come from it all for His glory and His glory alone