This is my journey to healing from a rare and ugly disease. I hope to be an advocate for all rare diseases that are often misdiagnosed or worse left to think it is not real.
My Reason
My sweet Elijah has used every wish, every prayer, every day to ask for my complete healing. I knew in 2008 because God told me when I first started getting really sick that things were going to get much worse but He would heal me only when His timing is right and He receives the glory for my healing. For those of you that do not know, I have Idiopathic Gastroparesis caused by a genetic condition known as Autonomic Dysfunction. I am currently on IV nutrition through a central line and on several medications. I had a gastric pacer implanted in 2010 to alleviate some of my symptoms and it worked well for 6 months but my nerves quit responding and I finally had it removed this January. In other words it did get much worse. I start this blog now because I know God will not let my baby's faith die.
Monday, March 4, 2013
Day 44
It's Monday, and most people dread Mondays, but not Hope. Monday is her favorite day, She loves going to school and the beginning of a new week. Plus she gets to watch RAW, her favorite show. Right now she is in the kitchen with her friend Amber who came over to study for a project. Right now instead of studying, Hope is teaching Amber to make pancakes and scrambled eggs. She also taught her to make a grilled cheese. As a teenager if you can make that, you can survive. I am so glad I passed my love of cooking to my Hopie and my Elijah. She used to play Rachel Ray in the kitchen which was so funny to me because i used to pretend i had a cooking show but I thought you had to sound like Julia Child because we didn't have the food network growing up. I know my parents must have thought it was funny for me to be in the kitchen talking to my audience while I cooked, but it didn't seem to bother them because they got a meal and normally a dessert out of it. I always love having a house full of people and throwing parties or simple get togethers. Elijah most defiantly got that trait from me and sometimes everyday he wants us to come to a party in his room. He also got the perfectionist gene from me and if everything doesn't go just right then it is a total failure. I have worked with him on that and through that I have been able to accept that for myself I had to say no to throwing many parties and the ones I did were very scaled down. I have learned the house is how it is and life is how it is going to be for now. I know God is in control and He knows I have trouble giving up control so right now He has made me and I am so happy to hear laughter rolling through my house. My pain has gone from my surgery site and moved to more internal pain. I have done some twisting and lifting and I really hope I haven't caused a hernia because that would really suck. I really need to call and start the process to get me to Jacksonville so I can get this over with. I am having a hard time knowing my baby boy is about to be out of the house. I want to be able to spend some special time alone with with my little man before he goes off the college. I know he won't be gone for good, but I am going to miss him like a piece of my heart is being taken away. I am happy he knows where he wants to go to school and what he wants to do. I have to admit, I am happy he is not moving far away, even though schools all over the nation are recruiting him strongly. I still owe you the story of how Noah saved my life the first time, he is working on a cure for the second time and I know he can do it because he is so very brilliant. I have to tell you this is a very private, personal story. I had to get permission before I shared it because it is not just my story. Before I got pregnant with him, I was going down a very dark
road. I had been used and hurt so badly by what I thought was the love of my
life. He knew my values and said he respected me for them. He told me
everything I wanted to hear. After 9 months of dating I gave myself to him and
2 days later he broke up with me. I felt like he drove me out into the middle
of nowhere, kicked me out of the car, smiled and left me there. I knew the Lord
and I accepted Him into my heart at a young age, but even though I was saved, I
felt so very lost. After that I felt lower than the worst scum. While we were
dating, I slowly found myself going down a road I knew I should not, drinking
and partying and still going to church, living a lie. Later I found out that
while we were dating, he had been with several different girls. I was just
another conquest in his little black book. I know you are wondering what this
has to do with Noah, and I will get there. The summer after my senior year a
family member flew me across the country to babysit his little girl. While
there he molested me and almost raped me. He got me a drink and said it was
okay because he was going to be there for the baby, so I drank it. Little did I
know he added a whole 5th of tequila. I started feeling really woozy and
he got a strange phone call, started acting really nervous, and left me there
with the baby. I couldn't even pick my face up off the ground but I was so
thankful he was gone. I know without a doubt God saved me from that situation
because He knew it would be more than I could bear. While out there there was
nobody I could talk to so I wrote and offered my calling card for that
boyfriend I told you about earlier. He was in the Navy so I could not call
him, so I wrote him every day that I was in a very scary situation and I didn't
know what to do but I needed help and begged him to call me. When I finally got
home he did call me, and he thought the "scary situation" I was in,
was that I was pregnant and he was so relieved it was not that. That was the
point I knew he never cared about me at all. I have long since forgiven these
people and others that have taken advantage of me and pray for true joy, true
peace, and true love in their lives. Anyway, at this point you can imagine how
low I felt. I went from an abusive boyfriend to an ex-drug dealer who was 10
years older than me. Before, even though I would drink, I had my standards and
drugs and anybody who did them were repulsive to me. A situation at home I
won't go into drove me to pot, because I wanted that out of my head never to
return. Then there was the night I hit my rock bottom. I had so much alcohol
and drugs in my system that I should not be alive. I remember wanting to go lay
down in a car and I reclined my seat and several voices said, " Betsy, you
cannot go to sleep, get up." over and over until I got up, I know those
were Angels and if I had gone to sleep I would be dead. Finally we headed back
to the house and got pulled over, the kicker was the police officer that pulled
us over was my church youth director so I had been busted on so many levels.
The hypocrite had been caught. Thank God they let us go. When we got to the
house I wanted to go to sleep again and everybody just laughed at me. I laid
down on that couch and died. I was in a garden with a stone bench. The colors
were like none I had ever seen, it was like the colors were alive, everything
was beaming with life and joy. Then Jesus personally met me. I thought He was
an Angel at first because He did not look anything like the pictures you see.
It was Jesus in His full glory. The first thing I said was, "I want to see
Ethan." He said, "Betsy, I cannot let you see anything else, you have
to go back, I have so much planned for you." Then I remember being slammed
back into my body and I awoke completely sober. A week later I found out I was
pregnant, and every day of my pregnancy I prayed that God would not let my
child pay for my sins. At 3 months pregnant I met an old friend at my brothers
graduation and I told him I was going to church with him the next day. When we
got there, the youth director said they were going to camp the next day and
asked me to come. At that camp I rededicated myself to the lord and I knew
everything was going to be alright. The father took everything I owned and
moved out of state ans told me that was not his child, I told him, fine, it is
not your child. That was the first good decision I had made in a while. I loved
my new church and reconnected with an old friend who was also pregnant out of
wedlock. She was 6 months farther along than I was, and was a real solace in my
time of trouble. I wasn't going to name my son Noah, but when he was born that
name was written all over his face. He was born perfectly healthy, God had
answered my prayers. That baby saved my life, and showed me what true love was.
He was such a good baby, in fact his little cry was so sweet my
sister would try to make him cry. I know I am laying a whole bunch of
information, personal, private, information out there, but if it can help one
person, I am more than happy to share. Two months after Noah was born, my
friend introduced me to her future husband's cousin, Clint...this one is a
truly amazing story for another day.
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