I found myself sitting in the same orange painted room with the purple exam table that I had been sitting in every week since I had made my dedication to my recovery nearly three months before. Every week we would celebrate my small victories like my blood pressure stabilizing , maintaining weight, or increasing my tube feeds (I was on them because of a disease not the anorexia). I had the love of my life beside me every time unknowing that in just a few short weeks he would propose to me. My crawl from the bottom was very hard full of a million breakdowns, but each time the sun found a way through the clouds. On this day she didn't walk in the room with her usual happy attitude....it was bad news.
As she sat down in front of us as usual her face had an almost forced smile on it. She began to explain that though my anorexia was officially stable the disease I had called gastroparesis was progressing, and though I was following all her orders with my future husband keeping a very supportive eye on me. I had said that one of the happiest things about finally getting myself on the right track and falling in love was that I would actually get to be that perfect wife and mother I always dreamed to be...her next words would be the most crushing I had heard since the phone call telling me my mother had died. My organs were becoming damaged and we were having trouble keeping my nutrition stable...I was twenty three years old and there would be no baby for me, my body was 'incapable of supporting a pregnancy'.
It was heartbreaking and I tried so hard to make the best of it, to focus on the fact that I would be a step mom to three awesome kids. I was put on birth control as a precaution to eliminate any chance that it could happen because a pregnancy would kill me. I took it as I was directed as. my health kept getting worse. It was a little easier for Josh because he already had three little ones who were so amazing, But I knew how hard it was for him to know how broken my heart was. I had to be started on IV nutrition, which only solidified everything they said about me not ever having a baby. I was twenty three years old, and told I couldn't do the one thing I always dreamed, that a woman is suppose to be able to be. The anorexia had destroyed my time in college, taken away my music scholarships, and destroyed relationships with my loved ones and now this new disease was going to stop me from doing the one thing I had left to hold onto...being mommy.
The months passed by and I became a step mom to those three beautiful babies, attempted to move on from the news that still haunted me. I was still able to hold onto a strong recovery and battle the disease that was trying to destroy me. Strangely it was a phone call on the morning of Mother's day 2010 that began a string of events that would change me forever. It was the chief of the emergency room calling to have me come in because I had developed a line infection leading to sepsis. I would be admitted on high dose antibiotics for a week and continue them at home for a month. Josh asked the doc if the IV antibiotics would cause my pills to fail and was told that I would never get pregnant in this condition.
The month went by and the infection was cleared, my port had been damaged too badly to leave in so they removed it and placed a PICC for TPN. It was mid-July when I went to the doctor for my usual exam to check on my TPN and all that. I told her I had been feeling horrible lately, constantly nauseous and horrible headaches. She kind of laughed saying I am always sick to my stomach, part of the disease, but I insisted that smells generally didn't cause me to throw up like I had the morning before when Josh was cooking eggs for the kids. She kept saying there is no way, but she would add a pregnancy test to my array of orders. When I left I honestly didn't expect to hear anything because I had just come to terms with the fact I could never carry a baby.
I had quite literally just walked into our empty apartment and before I could even sit down my phone went off. The voice on the other end of the line was that of my usually calm doctor yelling, "you're pregnant, it can't even be possible, but you are pregnant. I have already called the high risk docs to figure out a plan". With that she quickly hung up and I was left in a state of shock, refusing to tell Josh why I was so freaked out until he got home from running errands. He literally opened the door in mid sentence saying, "what is wrong"? thinking I was going back to the hospital. His first response was "get the f**k out of here", and then went in search of a pregnancy test. We watched together as two blue lines appeared on the stick. I had the impossible growing inside of me, we were having a baby.
That first appointment at the OB we were surrounded by experts all saying one thing, "You cannot have this baby, the only option is to terminate the pregnancy". I do not think I have ever been so angry in my entire life, the one dream I had during my whole life was to be a mom, months before they had ripped it away from me, and now they wanted me to kill this little miracle growing inside of me. It even went as far as them trying to convince Josh that he would probably lose his not only his wife but his unborn child too. It was probably one of the most angry times of my life hearing them repeat over and over that I should kill my baby, the baby they told me would never exist anyway. After almost three hours I walked out, too fed up to hear another word. It was made clear that I was going to have this baby even if I had to die to do it.
Every week meant another doc's appointment, another concerned lecture, and to make things worse at ten weeks my routine pelvic exam had yielded precancerous cells requiring a special procedure to make sure I did not have cervical cancer. We were blessed to find out that everything came back negative, but on that same day we were informed that the following week we would be pulling my central line, stopping TPN, and I would go in for surgery for another jejunostomy for tube feedings. An abdominal surgery on someone who is 12 weeks surgery is incredibly risky for baby, and there were no other options because another infection would kill us. During our pre-op appointment a nurse told me as if it were nothing that they weren't doing my surgery at the Women's and Children's hospital because there was no way to save the fetus in a crisis. It was an obvious fact that I didn't need to hear on top of everything else. Thank God she was wrong, the surgeon and the team took very good care of us, and he came through the surgery perfectly.
When I came home from the surgery I was very sick and in so much pain that they had to administer pain medications for me to even tolerate anything through the tube. I was placed on bed rest for the remainder of my pregnancy. Every night I would pray for another good day, another night of him kicking me in the ribs, the bladder, it didn't matter because he was still alive. I would cry and cry through the painful tube feeds, and fought the docs on upping the pain medication because I didn't want my baby in the NICU withdrawing because of me. Despite the ultra sounds once a weeks and NSTs twice a week the news was still uncertain. We were always told to prepare for a NICU baby because I couldn't gain weight, there was no way he could be a normal weight, and he was going to have to withdraw from the pain meds I was being given. Every time he would be still because he was trying to sleep I would mess with my belly until he woke up, panicking that I had lost him.
On February 17, 2011, 38 wks and 2 days, having made it to full term defying everything the professionals had said we went in for our normal ultrasound and NST. It was 9:15 and there I was smiling with my pregnant belly uncovered with jelly all over it waiting to see my baby boy. It didn't take long before the tech couldn't hide the look on her face, Josh squeezed my hand before anyone had a chance to say anything. My baby who had fought for so long to make it this far wasn't moving, wouldn't practice breathe despite being buzzed repeatedly by the tech. The only signs of life he had was a heartbeat, and things had just become critical. I was tucked into a bed, IV started, monitor on less than an hour later with doctors surrounding me laying out what would happen. If there wasn't improvement in the next few minutes I would go in for a crash section under general anesthesia, but if he improved I would be delivered around noon when my OB could get there.
At 12:00 pm I walked under my own steam into the OR where a spinal block was done, catheter was placed, and I was draped and prepped for surgery. It was surreal and terrifying that I was about to be a mother, Josh stood and held my hand letting me know what was going on the whole time. At 12:34 pm I heard the first cries of my beautiful son, and held my breath for whatever bad news they were about to tell me. I expected to have them rush my son off to the NICU without even seeing him, but in a matter of minutes my husband walked over carrying a little bundled wrapped in those hospital baby blankets with a little blue and pink cap on his head. They placed him on my chest (keeping a good hold on him since I was still numb and being operated on) and I was staring into the eyes of the most beautiful gift I had ever been given. After months of scaring the crap out of us, telling us the most horrible things we were about to face our son was born weighing in at 6lbs 10oz 19 inches long, an APGAR of 9, and not an ounce of narcotic in his system. We would spend three days in the hospital together, not one of them in the NICU or ICU.
My son is the reason why I never give up hope, why I hold faith not in science but in my beliefs. My son is a miracle, there is no other way to describe it. Doctor after Doctor came into my hospital room and said flat out that we had been given a miracle because there was no reason things should have gone this well, there was no explanation as to why he had not even a trace of the narcotics I had been on my whole pregnancy in his blood. Holding him in my arms remains the most amazing thing I have ever done to date, and everyday he reminds me why I fight, why I don't give into the pain of the disease I have, or why I can't allow that old monster in the cob webs of my mind back out. Miracles can and do happen, you have to trust your heart. I couldn't imagine a life without this little boy asleep next to me right now, and that is what the doctors had told us to do. They were right about the pregnancy causing my illness to get worse, but I wouldn't change it if I could. You don't let a miracle go, and no matter what happens to me in this life I know that I have been given this gift that is so precious that all the pain and tragedy are somehow worth it. My son is a piece of me, who will stay here once I am long gone telling stories of his mommy, and knowing that his mommy made the choice to give him life even if it meant giving her own because she knew he was going to do amazing things.
The good, the bad, and the ugly of surviving an eating disorder, a battle with self harm, and an ongoing battle to fight a disease known as Gastroparesis!
Wednesday, November 19, 2014
Wednesday, November 12, 2014
The Defining Power Fear Holds...IF WE LET IT
The dictionary defines fear as "a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid". There isn't a person or even animal on this planet that hasn't felt that exact description of fear, felt their heartbeat quicken, the sweat bead down their forehead, and that immediate need to run. Things that cause this feeling can be as simple as a spider landing on your arm to the bone crushing fear that happens when we face losing someone we love more than life itself. There is nothing wrong with being afraid, fear is a normal reaction. It is the power we give the fear that will decide whether we allow it to define us.
I lived in fear for many years, and even still today hold fears inside my heart. Years ago I gave my fears the power to control everything from my appearance, my actions towards and around others, and control my thoughts. I was terrified how the world would see me so I hid from it, I wore what the television said I should, followed every trend around, afraid to express my own feelings towards anything. That fear that constantly left me feeling like I was failing my mother, my family. Pain fueled my fears, pain that become too much for me to bear on my own anymore.
I had to find a way to hide my fear, protect me from the pain it would cause, so I starved, I purged, I cut my body, and I watched every night as my own tears poured down my arms unable to let them come down my eyes, showing my weakness, allowing the fear a place to take hold. My protector became my anorexia, my razor blade and I threw all my trust into every lie that was whispered into my head playing off my own fears. If I looked thin not only would everyone at school think I was cool, but I might just be enough for her, enough for her to put down the bottle, to stop the screaming, and bruises that came every night. If I bled enough no words, no bruises, nothing could hurt me...I didn't need to cry, I controlled my pain, controlled my fear...I controlled it all.
Even when my secret lover everyone called a demon was given a name, Anorexia Nervosa to all around me, when everyone told me they loved me I didn't have to starve, didn't have to bleed I couldn't stop, I could risk the pain. Though I couldn't see it I was defined and driven insane by my fears. I was driven even deeper into hiding, not only did I have to keep control of the so many rules I had given myself, allowed to be whispered into my head..."is the number up...fat cow you deserve pain, purge, bleed, ask for my forgiveness to keep my protection". When confronted by those around me it was simple...smile, stick to the lies I had practiced so many times in the mirrors, the mirrors that I had learned to look at people who loved me and hold back the tears and the desperate need to fall at their feet begging for the help they desperately longed to give me. My fear sent me running deeper and deeper inside myself engulfing me, ruling me, allowing my demons to consume me from the inside out, and keeping that hand pulled tightly back I so desperately longed to reach out.
Years of being trapped alone with such horrible things racing through my head keeping all the love that God and everyone tried to pour into me out caused me a fear to even breathe. I believed that lie screaming in my head that I was no one, the wrongs in the world were on me, that bottle that eventually took my mom from me was on me, the bruises and harsh words of troubled parents was on me, a man taking me without my permission was on me, and I had to die to make it right. I poured bottles of pills inside and bled so much out of me that night that I thought it was over. Despite the yelling EMTs, the tubes, wires, alarms sounding everywhere, when the darkness hit I thought I was gone.
I learned a whole new fear when I opened my eyes and saw the light shining inside that intensive care room. My new fear was leaving this world like this, to go believing the lies that had set up some evil shop in my head, some demon that had made herself my only love, to have the last memories I leave on this planet of a person defined by fear covered in cuts and starving away. It was a very long battle out of that place, and the fear pulled me down many times with more lies about how I would never make it out. I could no longer live like that, my fear now was being nothing to this world. I didn't want to be a dark spot in the Picture of our world the Lord paints, I longed to leave a spot of light no matter how small. That is why I write these blogs, I spent time sharing my story with others in the same place because I spent so many years trapped by my fear driven to hurt myself, and no one should feel those things, no one should feel that darkness...that loneliness. That is why I will never silence until my body no longer allows.
I am twenty eight years old and believe me even in my recovery I hold fears still. I fear I will not be the wife I should be to my husband, the mother my beautiful three year old deserves, and I fear this disease that is trying to tear me from this world will win before I can make my little spark of light in the Lord's painting. I fear the pain that comes with this disease eating my organs, the surgeries, the grim doctor's looks, and the time I will have to take the organs of another, a gift I fear I do not deserve. There are days when I fear the end, fear the time that I will have to say goodbye, the last time I will feel my beautiful baby cuddled up next to me as I sing him to sleep, that my last words will not be enough to show them how much I loved them. I use to fear the darkness, but in my heart I know there is no darkness because the stars will guide me to His eternal light, and I remember that every time the darkness finds it's way in again.
My point is that I still have fears, but they do not define me. It isn't about never being afraid, that is an impossible feat, it is about knowing that fear only has power when you allow it to. You decide whether to believe in the fear or the faith to overcome whatever you are facing. If you are not a believer than I speak of the faith in yourself because we should all have it believers or not. Be the spark of light in the painting of this world, no matter how small.
I lived in fear for many years, and even still today hold fears inside my heart. Years ago I gave my fears the power to control everything from my appearance, my actions towards and around others, and control my thoughts. I was terrified how the world would see me so I hid from it, I wore what the television said I should, followed every trend around, afraid to express my own feelings towards anything. That fear that constantly left me feeling like I was failing my mother, my family. Pain fueled my fears, pain that become too much for me to bear on my own anymore.
I had to find a way to hide my fear, protect me from the pain it would cause, so I starved, I purged, I cut my body, and I watched every night as my own tears poured down my arms unable to let them come down my eyes, showing my weakness, allowing the fear a place to take hold. My protector became my anorexia, my razor blade and I threw all my trust into every lie that was whispered into my head playing off my own fears. If I looked thin not only would everyone at school think I was cool, but I might just be enough for her, enough for her to put down the bottle, to stop the screaming, and bruises that came every night. If I bled enough no words, no bruises, nothing could hurt me...I didn't need to cry, I controlled my pain, controlled my fear...I controlled it all.
Even when my secret lover everyone called a demon was given a name, Anorexia Nervosa to all around me, when everyone told me they loved me I didn't have to starve, didn't have to bleed I couldn't stop, I could risk the pain. Though I couldn't see it I was defined and driven insane by my fears. I was driven even deeper into hiding, not only did I have to keep control of the so many rules I had given myself, allowed to be whispered into my head..."is the number up...fat cow you deserve pain, purge, bleed, ask for my forgiveness to keep my protection". When confronted by those around me it was simple...smile, stick to the lies I had practiced so many times in the mirrors, the mirrors that I had learned to look at people who loved me and hold back the tears and the desperate need to fall at their feet begging for the help they desperately longed to give me. My fear sent me running deeper and deeper inside myself engulfing me, ruling me, allowing my demons to consume me from the inside out, and keeping that hand pulled tightly back I so desperately longed to reach out.
Years of being trapped alone with such horrible things racing through my head keeping all the love that God and everyone tried to pour into me out caused me a fear to even breathe. I believed that lie screaming in my head that I was no one, the wrongs in the world were on me, that bottle that eventually took my mom from me was on me, the bruises and harsh words of troubled parents was on me, a man taking me without my permission was on me, and I had to die to make it right. I poured bottles of pills inside and bled so much out of me that night that I thought it was over. Despite the yelling EMTs, the tubes, wires, alarms sounding everywhere, when the darkness hit I thought I was gone.
I learned a whole new fear when I opened my eyes and saw the light shining inside that intensive care room. My new fear was leaving this world like this, to go believing the lies that had set up some evil shop in my head, some demon that had made herself my only love, to have the last memories I leave on this planet of a person defined by fear covered in cuts and starving away. It was a very long battle out of that place, and the fear pulled me down many times with more lies about how I would never make it out. I could no longer live like that, my fear now was being nothing to this world. I didn't want to be a dark spot in the Picture of our world the Lord paints, I longed to leave a spot of light no matter how small. That is why I write these blogs, I spent time sharing my story with others in the same place because I spent so many years trapped by my fear driven to hurt myself, and no one should feel those things, no one should feel that darkness...that loneliness. That is why I will never silence until my body no longer allows.
I am twenty eight years old and believe me even in my recovery I hold fears still. I fear I will not be the wife I should be to my husband, the mother my beautiful three year old deserves, and I fear this disease that is trying to tear me from this world will win before I can make my little spark of light in the Lord's painting. I fear the pain that comes with this disease eating my organs, the surgeries, the grim doctor's looks, and the time I will have to take the organs of another, a gift I fear I do not deserve. There are days when I fear the end, fear the time that I will have to say goodbye, the last time I will feel my beautiful baby cuddled up next to me as I sing him to sleep, that my last words will not be enough to show them how much I loved them. I use to fear the darkness, but in my heart I know there is no darkness because the stars will guide me to His eternal light, and I remember that every time the darkness finds it's way in again.
My point is that I still have fears, but they do not define me. It isn't about never being afraid, that is an impossible feat, it is about knowing that fear only has power when you allow it to. You decide whether to believe in the fear or the faith to overcome whatever you are facing. If you are not a believer than I speak of the faith in yourself because we should all have it believers or not. Be the spark of light in the painting of this world, no matter how small.
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