A letter to a 15 year old me

To my 15 year old self, 
     I know it has been hard, as a little girl you cried when you heard them screaming, you cried when mom moved us to grandma's house, and you blamed yourself when you found out that they were getting divorced. You were a little girl trying to hold a family together, and slowly pulling yourself apart. You always had one steady rock with you no matter what she was there...grandma. The time you lived there was probably some of the best times of your young life, being with the person who made you feel loved and safe all the time, played with you, and never wanting you to be anything more than her 'Andi'...a kid. But the pain was still there as you watched dad make a new family, mom drink more and more, and then you get told that mom is remarrying and you won't be at grandma's anymore. 
     You tried your best to shove everything inside, tried to be the best in school, sports, band, and everything else. You learned how to keep secrets for your parents, secrets that no kid should be incharge of. I remember how you felt inside, how all the criticisms mom made trying to make you better made you crumble, and I know how it felt when dad quit softball, how you felt like a stranger in his house. I'm surprised you made it to 15 before things fell apart because you were carrying such a heavy burden for so long, and no one had a clue. No one asked about the bruises from the nights mom went away and the whiskey came out, no one was in the car as you were swerving around the roads trying to comfort you baby sister in the backseat praying we made it home, they didn't have to slap her in the face after putting the baby to bed to make sure she was alive, and so much more. Grandma knew something was wrong, but she also knew you well enough to know you wouldn't open up, so on the nights when mom was out and Eric was at work she would keep you company as you watched Kelly. By that time, I know grandma was not able to be the physically strong woman she had been before the cancer and the chemo destroyed her lungs, but she was just as onry and stubborn emotionally, and promised she would always be there for you.
      At 15 your threw yourself into music, eventually becoming captain of my drumline, and throwing yourself into music and try outs. It made you happy, it made things feel safe, and you are good at it. Mr. P and Mr. J had become like family over the years esp, and so many close bonds with people from that time that you will still have to today. At that same time you found another way to get better control over yourself, don't be ashamed, one day you stepped on a scale, not liking what you saw, you went on a diet. But, the diet didn't seem to be enough. Your focus turned quickly to weightloss, it didn't start out as anorexia, but it climbed that way very quickly. You would weigh at least eight times a day, purge if you took in anything, and you stopped eating. Of course people complimented the weight loss at first, your bad family didn't buy, and it became harder to keep up with the lies, all the fear and pain was just so much, so you found yourself one day with a razor in your hand and you dug into your flesh, watching you pain drip out of you you thought you had found what was best for you. At fifteen you were a lost, broken girl, praying to be saved. 
     I am going to tell you the absolute truth right now, those band kids, and two band dads are going to save you when you are in your senior year. They are going to find out your secrets with cutting and the anorexia, and they are going to get you through that year. That year had a lot of personal problems with family, but brought on so much amazement when I realized all the people I had standing behind me, even as far as my best friend in Texas. You are going to win awards you've never thought you could get, and it will be a heartbreaking day after graduation, and you are suppose to go to Missouri State on scholarship for music performance and education. This next part is going to make you feel like you would have made better choices, or possibly wish you wouldn't have made it that far. 
     You will enter into your first inpatient eating disorder center on your 19th birthday, spending Christmas, New Year's, and Valentine's days at McCallum Place. You fought them every step of the way and you will end up leaving more dedicated to your eating disorder than ever. So, your parents are going to send you to college where you will meet a great group of friends, some of which still stay in touch today. They will watch you relapse after you two months with Mark and Maggie before school started getting stabilized I still failed. And, by December I would be led into the hospital by two close friends, they led me to my room, and proceeded to put a feeding tube down my nose. 
     You will fight this battle for eight years, and there will be times you try to give up, but everytime you get up you find yourself stronger. And, at some point down this road you will see why recovery is so important, you will meet your husband, and the Lord will give you the miracle of a little boy. The years of torment on your body have caused severe damage, and I promise it is a tough road. The road isn't always sunshine and butterflies, but when you look in your son's eyes it will all be worth it. Don't get discouraged by the trials that are going to come ahead of you, you will have people that will come into your life to help you, you will develop bonds thicker than blood. You are going to be a wife and mom to an amazing kid, but you have to keep getting up, even when it is the last thing you could ever want to do in some of these times, but I'm telling you the future has light in it, you can learn what happy means. 
     The best I can tell you exactly fifteen years of where you are now is that you have to keep getting up, keep fighting, hold onto that strength because I know you can.
                                            Always rise when you fall- Andrea aged 30   

Gastroparesis Awareness...We have to do something

     I made this video awhile ago to give the world a little bit of a look into what it is like to live with gastroparesis and other motility disorders. I know people who have watched it and they still don't get the severity of the disease, or the fact that it claims many lives every year without discriminating...young, old, black, white...this disease doesn't care.

     Let me paint a picture for you, I want you to think back to the last time you had a nasty stomach virus, and I mean just the most wretched virus you have had in ages. Imagine yourself on the floor hugging the toilet bowel begging for mercy as another round of retching takes over, but wait this time as you are emptying out what you believe has to be the last of anything left in your body your stomach makes a gurgling sound. You know the sound that I am talking about, the alarms are going off as you fight to your feet, pull your pants down, only to find yourself spewing liquid from both ends. You beg and plead with God to make it stop, making promises that you won't keep once you are better (everyone does that don't feel guilty). When you finally get a break you find yourself practically crawling to the nearest bed or couch beckoning your spouse, parents, or whoever to bring you water and put a fresh wash cloth on your head. This goes on for a few days, but eventually you are able to look at food again, take in nourishment, drink some water, and soon enough you find yourself back on your feet ready to face life out in the real world. Now, for just one minutes imagine that the relief you feel in that moment never comes. You know understand the world of digestive tract paralysis...gastroparesis, pseudo-obstruction disorder, short gut, and other motility disorders.

     We live everyday facing the symptoms of these diseases, and there is no cure. There are medicines that can help the symptoms, but for some those medications cause horrible side effects leaving us with no options, but to deal with the symptoms as they come. Our lives become countless trips to the emergency room, admissions to the hospital, needles, tubes, unable to work, and countless other things. All the while we are facing these horrible symptoms with our disease, the debilitating pain we run in to people that tell us that it is in our head and we just need to "buck up" and get it together. They want to make us feel bad for being on disability because they feel that you should be able to work for just a "tummy ache".

      Let me tell you my story...I was diagnosed with gastroparesis in 2008, in 2009 they did what they call a sleeve gastrectomy or partial gastrectomy that is often done on overweight people, but in my case it was to increase emptying. They took me into surgery at 23 years old and removed all but 3 percent of my stomach and put yet another j tube in my intestine to feed me. The months passed and things just kept getting worse, and before long it became apparent they had to do something else. They put in a central line and started TPN, which is nutrition given directly into your heart. I was told I would never be a mom or live to be thirty...I have a five year old little boy and I turned 30 in December. It has been a hard road, and I have been labeled terminal. I have had countless central lines that have gotten infected, twice I went into septic shock and could have died. I have had countless surgeries for tube placements, fistula take downs, and wo years ago I went through a very, very long surgery where they made a ten inch incision in my gut and they removed part of my intestine, took down two fistulas, and replaced my feeding (that we only use to vent to help with vomiting). I am dependent on the hickman central line in my chest to get the fluids and vitamins I need, and will go back on TPN when we have exhausted options, they avoid it since I am so prone to infection and the kidney damage alone with the heart damage makes me a high risk. I will need a transplant to see my son grow up. I'm 30 years old and I need a walker or wheelchair to go anykind of long distance. I am diagnosed with gastroparesis and short gut meaning that I don't absorb things in my intestine, I have a seven minute transit time, which is unbelievable fast. That is just my story there are many more like it and worse off than me.

     The only way things are going to change is if we change them, if we spread the word that something needs to be done about this, more research, more funding, more coverage for those of us trying to get treatment that some person behind an insurance desk decides we can't have. I am going to fight until I have no breath left to beat this disease, to see my son grow, and to hopefully see so many of my friends beat it too. I look forward to a day when we live in the world rather than in a hospital bed. We need your support. If you have any questions or have interest in donating to the casue please check out G-Pact.org for all the information you could possibly want. God Bless and keep fighting!

"You are Terminal"

     It has taken me a long time to find the courage or get past the anger to write this post, but I felt like it was time after a very eye opening experience at chruch today. Please forgive my typos it is very late and my meds have me half asleep, but if I don't get this out now I don't think I will. 
     About a month ago I had an appointment with my psychologist, her exact job is a pain managment psychologist who decides how you are handling with being sick and helps decide the best course of action for you care plan and your pain plan. I like her a lot, and respect everything she has ever said to me. We had gone in the week before to be evaluated by one of the pain docs who is her partner about getting a pain pump. It was explained to me that a pain pump is something we can't do becasue I am too prone to infection, and if I develope an infectin I could eslier end up paralyzed. I found myself with tears welling up in my eyes because pain control was beginnning to seem hopeless. My doc guided me into her room and laid on the situation in black and white. 
     The pain specialist physician who said that he couldn't safely put in the pain pump made his suggestion. The recommendation is that I be placed in palliative care, which I thought was hospice care, I thought they were telling me I was going to die, but they quickly explained that wasn't the case. They explained to me that I am officially terminally ill, I am not going to get better, and without a transplant (which they already have me ready to be shipped off to Nebraska for such a reason after the holidays when my husband gets home) I will most likely not live to see my son grow up. That put me into tears rather quickly and I don't like crying on front of other pople.
     They also told me that the palliative care doctors would be putting me on PCA meanng they would manage my pain through my central line since I can't absorb it the normal way and the patches aren't easing the pain enough for me to even get any rest. My psychologist and the palliative care doc had a long conversation on the phone because they are very concerned about my nutritional state because I have lost a lot of weight, I cannot hold any color, I can barely walk without a walker or wheelchare, weakness, fatigue, and when they do my labs the way the specialist at Barnes have asked them to they look very bad. Also concerns about my heart, the malnutrition has caused heart damage, and a past of kidney failure. The GI doc has declared that I am in intestinal failure and need to be on TPN as soon as possible despite the problems we run into with infection, but at this hospital GI does not manage nutrition at all. My palliative care doc and psychologist have spoken at lenth and told me that I have been allowed to slip through all of these medical professional's finger tips and if it doesn't stop I will die. They said that because I am so medically complex the docs are afraid to care for me and want to pass me off to the next doc, and it becomes one doc after another and that can't keep happeneing, and these two amazings docs are going out of their way to find me a proper doc who will take over my nutrition because the hydration and potassium I get through my hickman are only going to keep me going so much longer. 
    That appointment was the scariest appointment of my life, to have the docs come out and tell me that I am terminal, tell me how sick I really am. I know I was sick, but I wasn't ready to accept how sick. I am so use to pretending that I am okay because I need to be okay, I have a little boy with autism who needs me to be okay all the time, and now they are telling me that they are restarting TPN as soon as they find the right doc who isn't afraid of me and then IV pain meds, and I am looking forward to the strength that comes with nutrition and I will be happy to not have to have so much pain that I excuse myself to another room to let my tears fall and compose myself before moving on with my day to dayd tasks. This appointment scared me and made me so angry at the same time. 
     I am thirty years old and I have a little boy whose whole world depends on me, I can't die on him. I am so afraid of transplant and I know it is the only chance I have to see my beautiful miracle son grow up. I was so angry with God when I got home from that appointment. I needed someone to blame, and He was the easiest target, and I spent weeks in a state of anger wanting to scream and destroy everything around me and hug my son and cry. It was after a very hard night where I found myself praying becasue I had nothing left to do. I prayed for acceptance, for the ability to move on and be happy for the time I have left and pray for the chance that I still have a chance at a future. It was as I sat there on my knees I made a decision. I could continue to be angry and bitter at the world or I could stand up and I could face this. 
     I had a choice, just like the choice I had when I decided I wanted to let go of my eating disorder. This time I made the choice that I was going to go smile, make the best out of my healthy days, and when they get my nutrition up and pain undercontrol I am going to do things that I want to do...organize my house, my pictures, decorate Damien's room, and spend all my free time working with Damien and helping him through his autism. I might be sick, but I am not dead, and I have a bucket list .I am hoping that my friends will help me accomplish some of the things on my bucket list. I also want to devote the time the Lord has given me to helping other people, helpng them see that God loves them. I am going to write my book, and I am going to live while I can. I am going to have a great birthday with awesome people this december before we head off to Nebraska, and when the transplant comes I am going to keep smiling and face it with as much bravery as i can, and when I feel like I can't be brave I am going to turn to the Lord and keep moving forward for my little boy and for my husband. I can do this. 

     God Bless all of you and and I hope that I can be an inspiration during all of this, not because I am brave or doing something that no else can do, but I hope to inspire people to want to go around and spread the love. You many can't change the world overnight, but just but showing love to one person every day that needs it makes a difference and you can make a difference.

Blast from the Past

     We were headed to lil man's speech today when I looked out the window and caught the glimpse of the new branch of McCallum Place passing me by. For a minute everything went quiet and I found myself thinking about that first day so many years ago that my parents dropped me off at McCallum Place in Stl for treatment I desperately needed. My anorexia and cutting were out of control, and the whole world could see it but me. 
     In that moment I remembered everything about that day, riding in the back of the truck wanting nothing more than to disappear before we pulled into the day suite parking area. I watched as my dad carried up a suitcase with all my belongings in it knowing that soon enough they would leave and I would stay to do the one thing I hated most...eat. I remember them going through everything, signing papers, telling me to say goodbye to my parents, and leaving me in a room where girls wrapped in blankets paced around me. That sat me at a table expecting me to eat and drink, and I wanted to run away. When I called begging to come home I was met with the voice of my calm therapist telling me that I would be court ordered to treatment if I tried to leave. I was a kid, a teenager who just wanted to get away. 
     I was in the program for a close the three months between residential and day treatment. The staff did everything they could, and they fought for me when insurance pulled the plug after relapsing in days. At the time I hated the whole institution, I didn't want any part of it, and I was too young and stupid to realize how good I had it. That kind of treatment is a blessing if you can get it, and I had it once. After that I spent all my days in hospital beds with tubes or in inpatient EDUs that are fare less nice than residential offers. 
     I'm coming up on seven years in my recovery from my eating disorder, and some days I still feel like that stubborn kid who sat at the tables in McCallum Place. Those memories still burn bright in my eyes. There was a time that I found comfort in my hospital bed, it was my normal, and I didn't mind other people taking control over things because left to myself I wouldn't have survived. Now the docs have to practically tie me to a bed to keep me in the hospital when my life is endangered. It is amazing how the years can change a person, and in some ways leave us completely the same. 
     Those eight years of my anorexia my life was saved by doctors, nurses, staff members of McCallum, Research, and University Hospital countless times. Sure, I didn't find recovery until I hit rock bottom, but if I hadn't had those places before that there is no way I would be laying next to my son right now as he drifts off to sleep. Everyone around me thought it was so simple to 'just eat' and the people that worked with me during those years never said those words to me. They sat at tables while I screamed at them, cried, pushed trays away, and they held me down and forced nutrition on me when I refused. People think that is barbaric, but had they not stepped in I would have starved until there was nothing left. Those feeding tubes and IVs, as much as they sucked they kept me alive in some of the darkest days of my life, just as they do now so I can be a mother to my son. If I hadn't had those people that believed in me, who refused to leave when I pushed them away my story would have a very different ending. 
     When I looked down at my son as we put McCallum in the review mirror he was smiling up at me, and I felt so grateful to be where I am. I am sick, my body is weak, but my mind is completely my own these days. I spend my time fighting to be here to see my son grow up, no longer am I one of the girls pacing around the room in a blanket hoping to burn off a few calories before someone makes me sit down. Life is hard, and I know that my ED lives inside me but I also know that I won't let her see the light of day again. The years of treatment taught me that you can have a whole village around you encouraging you to get better, but if you don't want it for yourself it isn't going to happen. Eight years of playing with my life, barely escaping death, in the end it was up to me whether or not I would stop. I waited for so long for them to fix me when all they could do was give me the tools to fix myself. I didn't even realize I had taken anything away from those many stays in treatment until I started my recovery and all of the things they had said to me started to come into practice. I could finally see their truth and accept that mine was flawed. 
     If you are struggling with an eating disorder I encourage you to seek help, any help you can get. No one deserves to live trapped like that, to have lies screaming at you every second of everyday. So many people can't understand what it is like to wage war against yourself, but it is the hardest battle I have ever fought. The lie is that you can't do it, you can't find recovery, but the truth is you can. No one can make the choice for you, in the end you decide.

You Never Know When You May Be Someone's Hero

     June 9, 2009 seemingly started like every other day. The world was waking up, turning on the news, drinking their coffee, and watching the last minute traffic report before they went off to the other room to get ready to head off to work. I wasn't much different, I had gotten out of bed, obviously I had no where to go, but I unhooked my tube feeds and I walked around the apartment making sure it was just me and the cat as usual. For some reason this day felt different for me, I grabbed a clean pair of pajama pants and tee shirt and umped in the shower. By this point everyone thought I had gotten it out of my system, I had already attempted to kill myself, it was seen as a cry for help, they same sure my blood work looked okay and with my assurance that I was an accident they let me go right back home with my back of pills all prescribed by the same shrink. The only problem is that they were all wrong, I was in the darkest place I had ever been in  my life. One of my friends had spent every free moment she had watching me, saving me from myself, but she had to work eventually and I had to be left alone. She had begged the doctors not to send me home, begged them to see that I was in trouble, and none of them would listen.
     So, here I was alone, 23 years old trapped in my anorexia covered in cuts, blaming myself for my mom's death, and dealing with horrible nightmares of the rape that had happened to me just a year before. No one had helped me face any of that, and I hurt so bad just to breathe. When I looked at the bag full of those pills and the thought came over me that I was going to crush all those meds and push them inside my j tube, a direct line to my intestine. And, contrary to popular belief there was no selfish thought in my mind, I thought that I was doing everyone a favor by taking myself out of this world, no one would have to worry about me, wouldn't have to wonder if I was eating, purging, cutting, or doing something else to harm self. It was almost like watching myself from a distance crushing up these pills one after another, knowing that the combination would put me to sleep and I would never wake up again, I would never disappoint my family and friends again...that was literally the lie that was repeating over and over in my head.
    Once I had everything set up I sat on my bed and before I pushed that syringe down my tube I grabbed my razor and I drug it across my wrist, one last time I would believe the lie that my blood was my pain pouring out of my body, and that cut released endorphins that calmed me enough to pick up that syringe, open the J port on my tube, and I pushed a lethal dose of prescription medication into my intestine. I curled up on my bed hugging my teddy bear waiting for it to happen, and then my phone chimed loudly enough to cause me to jump. I picked up my phone, and with the meds already kicking in I couldn't make out much of what was said, but I knew it was from my friend Kelli who lived states away, who I only knew from facebook. She had sent me a txt to ask me how I was doing and let me know that she was there for me and she was worried about me. In my drugged brain I thought I txt her back that I was fine, but what she got was a jumble of letters that made absolutely no sense.
     Now Kelli got that txt and there were a number of things she could have done with it, the first one being just ignoring me, thinking I was just being stupid or accidently sent her that jumble of letters. She could have thought something may have been wrong, but that it was none of her business and moved on with her day. She didn't do any of those things, she tore her room apart to find a letter I had written her months before to find my address. She got on the phone with the authorities and all the way from Montana got the ambulance, fire department, and police to my apartment in Missouri. The broke in my house and found me barely breathing laying on my bed, my blood pressure was barely registering by the time they got there...I was dying. They got me in the ambulance and I quit breathing completely, and by the grace of God tey brought me back. I came to enough in the trauma room to find a friend of mine telling me that she would be going to the courthouse with another friend to put me on a 96 hour hold, and then I was out again until an ICU doc came in and grabbed my face, I remember everything he said to me. "Andrea, you are very sick, you are probably going to stop breathing again and I will put a tube down your throat, I am not going to let you die, and when you wake up it will be in the intensive care unit tied to the bed if you fight me". With that I passed back out.
     When I opened my eyes late that afternoon I felt like I had been hit by a truck, I had tubes coming out of everywhere, but when I looked at the window I saw the sun, the wind in the trees, and for the first time in so long I welcomed the pain because it meant that I was alive. God had saved me that day for some reason that I couldn't even have guessed at the time, He had a friend from states away that I had only known from FB check on me, and gave her the wisdom to call for help when most people would have just left it go. I should have died that day and I learned what the meaning of grace was first hand. That was the day I realized that I wanted to live, I didn't know how to do it how to make the pain bearable without starving and cutting, but I knew that I didn't want to die. It would be a long, slow battle up hill for me to find recovery, but here I am seven years later to the day in recovery with my beautiful fie year old cuddled up next to me sleeping.
    There are no words that I can say to express the gratitude I have to Kelli, for seeing more than just a gibberish txt that most would have ignored. She is my hero, and I pray one day I can tell her face to face how thankful I am that she was in my life. You never know who God is going to place in your life to rescue you when you are too far gone to rescue yourself. I hope that by sharing this story more people take Kelli's actions to heart, that they don't blow off someone in need, that they follow their heart because they may just save a life. Hereos come in all shapes and sizes and can show up anywhere. You never know when you might be someone's hero.

My Mother's Day Miracle

     It was May 8, 2011 when I was awoken by my cell phone at eight o'clock in the morning, and anyone who knows me knows better than to blow my phone up that early. The day before we had been in the ER getting a stubborn port accessed after the home health nurse failed to get the needle in the right place to run my TPN. We went in, they drew blood, ran some x-rays, put the need in and sent me on my way. Who was I to think anything more would come out of that? I was incredibly wrong. That phone call was from the chief of emergency medicine telling me that he needed me to come back to the hospital immediately because the blood they had drawn the day before showed that I had an infection in my line and possibly in my blood stream. Up until that point I knew that having a central meant that at one point I could very well get an infection, but I really didn't think it would happen to me, but we all think it isn't going to happen to us. He immediately informed me to pack and bag and get to the ER as soon as possible and be prepared to stay.
     Our other kids were with their biological egg donor, so my man pulled me weakened out of bed and started backing a bag together unknown to us how long I would be there. Part of me thought they were just freaking out, I had never had an infection before and I had been on TPN for a year through a PICC line in my arm with no issue.  I went into robot mode as Josh reminded me of all the things I needed to pack to take to the hospital with me, always cool in a crisis situation. Me, I  went for the denial part of the equation.. I kept telling myself I was fine, no fever, I had a headache and my legs were hurting really bad. I tried to tell Josh I was fine and that he should just go to work and not worry about dropping me of at the hospital, but this wasn't his first rodeo with me and before I knew it I was in the back seat of our friend's car headed to the hospital. As we pulled into the ER entrance Josh helped me out of the car, handed me my pillow, gave me a kiss, told me he loved me, and that he would be back as soon as he could get off work.  I waved with tears down my face as they pulled away and I turned to check into my least favorite place in the world.
     I waited about twenty minutes before they called me back, not triage just put me straight into a room  It was a matter of a few moments before the chief came in and told me that the blood cultures they had drawn the day before had already begun growing two bacteria not just in the line, but it had spread everywhere in my blood stream...I would not be going home anytime soon. They hooked up me up to a nice cocktail of antibiotics that made me feel worse than I did when I came in, moved me into a room, and there I would spend my first mother's day...along...without my three little step kids whom I had grown to love so much.
     I spent the days bitter towards doctors telling them I wanted to go home, that I wasn't that sick, and finally I convinced them to let me go home on IV antibiotics with extra nursing checking in around the clock. I had faced my first bout of sepsis and lived to tell the tail, little did we know there would be so much more to that story than just spending mother's day in the hospital being woken up by my husband to tell me that our middle son had given our daughter a buzz cut...Figured that was the extent of my story remembering my first infection....boy was I so very wrong.
     I got home and had weeks of running a nasty, but effective antibiotic that made me incredibly sick while killing the infection in my blood and my central line. About six weeks after I got out of the hospital I began having more and more vomiting spells, to the point that when Josh cooked eggs for the kid's breakfast I couldn't even come in the kitchen without throwing up. Now with gasttoparesis  vomiting isn't exactly a rare thing you deal with, but I had never been triggered so much by smells. So, in mid-July when I was going in for my weekly check up to discuss the results of my port removal and the cultures from my PICC line to make sure that I was clear to have another line placed in my chest for my nutrition I found myself asking a few more questions. At the time I looked my doc in the eye and said I think I have an UTI, and reported that my nausea had gotten even more out of control. She stopped in her tracks to tell me it wasn't possible. They had been telling me for years that there was no way that I would ever have a child of my own, no way my body could sustain a pregnancy. She rolled her eyes, and told me that she would run a pregnancy test even though we had already discussed that I would never have any babies of my own...I was only 24 years old. I peed in a cup and with my head hanging low I got on the bus and went home expecting nothing.
     I walked into our quiet apartment, kids at school, Josh running errands, and all I could do was just sit on the couch and think about how I would never be able to have a baby of my own. As I let myself sit there wallowing in despair over an issue that I thought I had already made peace with. Then my phone rang, I answered expecting to hear that she had called n antibiotics and more stomach meds, but I was clearly wrong. The first words she blurted out were, "You are PREGNANT"! I always thought my reaction would be to scream or something, but all I could do was go silent and fall to the couch. They had told me there was no way we could safely have a baby, but there was a baby growing inside my stomach. She told me that she had already got on the phone with OB and high risk and we would go from there.. Before I even had a chance to process everything Josh came bursting through the door freaking out because I wouldn't ell him what the doctor had said, so he automatically assumed the infection was back and I was headed back to the hospital. When I told him that I was pregnant he dropped his brand new phone on the table and repeated some words I would rather not advertise. I was pregnant....they had said it was impossible and then God gave us this miracle.
      I remember that first doctor's appointment where they tried to say that there was no way that we would survive the pregnancy because I was too sick to support a baby for nine months. They said I would die, the baby would die, or we would both die. All I could do was stand up and let them know that was a risk I was more than willing to take...THEY had said that I wouldn't have a baby and here I was with a life growing inside of me, I had just see his first picture looking like  peanut...if this wasn't a gift from God then I didn't know what was, and from that moment on I made sure that everyone knew that baby was going to make it to full term and we were both going to be alright. For nine months our lives revolved around OB appointments, surgery to put another feeding tube in to stop the TPN so we could reduce the risk of infection, there  was bed rest, and even a special test they had to do when I tested positive for cancer, and by the grace of God all of that worked out. I stayed on bedrest, tube feeding my lil man, fighting through the pain because I knew that we would make it. And, at a routine ultrasound and NST at 38 weeks and 2 days showed that the baby was in distress we were rushed down to labor and delivery for our c section a week early. Everyone predicted he would be too small, have to go to the NICU, there would be narcotics in his system that I had to be on just to et through the pain to make sure he got all the nutrition he needed to grow. But, that beautiful lil man came out with his bright blue eyes on Feb. 17. 2011 weighing 6lbs 10 oz 19 inches long, no evidence of narcotics in his system (an absolute miracle even by doc admission), and did not spend one day in the NICU. That was the day I knew I believed in miracles as I looked at that perfect baby staring up at me from my chest as I lay on that operating table.
     Here we  are five years later, and my baby is growing up, and despite facing the many hurdles that come with autism and speech delay he is still absolutely the greatest gift in my life. I opened his backpack yesterday and pulled out a bag that he had colored, as I opened it I saw it...my very first Mother's Day flower. Something I had given my mom over and over during those elementary years, and on top of that I pulled out a fancy laminated paper with my beautiful little guys' handprint on it and once again I couldn't help but tear up. None of this was suppose to happen, they told me I would never get the flower cups full of dirt from my child's backpack, they told me I would never hold him, look into his eyes, I would never tickle him, and watch him learn new things. They told me there were no miracles...only science, and science told me that I should have terminated my pregnancy. It was no coincidence that I was admitted to that hospital on Mother's Day, that infection was more than just an infection. God was working through us, and He gave me the chance to trust Him or trust a doctor telling me that I would die if I didn't "end the pregnancy". I was being asked to walk by faith, and I did.
     I am no one special, not a doctor, a teacher, in fact I am a recovering anorexic, cutting, I have attempted to take my life many years ago, I am thirty years old living day to day in a body that could shut down at any moment, there are people that don't like me, think I'm a loser, but I refuse to let any of that get to me anymore. I have failed in a lot of ways, but I have done one thing right...I get to be the mother to this beautiful little miracle who keeps climbing up next to me and giving me a kiss. I use to worry so much about what the world thought of me, and then my world suddenly became very small with blond hair and big blue eyes. Those days that I think I don't matter and no one would notice if I weren't around because I don't offer this world much I look into those big blue eyes and realize that I am something important, that little boy that comes up and wraps his arms around me, and wants to spend every moment at my side...to him I am the world. I am the mommy, the giver of snuggles, tickles, maker of pizza, the one t here to say "No" when he is doing something wrong, I am the healer of the boo boos, and the arms that scoop him up and holds him when he cries. When I wrap my arms around him and kiss his tears away all the judgments that come from the world, how everyone thinks about me it just melts away because you can hate me all you want, but I am a good mommy.
     This Mother's Day I ask you to just look at your babies and remember how you felt the day your babies were born, when you looked into their eyes and all the pain, all the crap in the world just stopped because in that moment it was just you and that beautiful gift. I was told that I would never be  mother and I have this miracle little guy just jumping all over and running up to hug and kiss me. Being his mother is the best thing I've ever done, the most amazing gift I've ever been given by God. The disease I have running through my body may take me out of this world before I'm ready, but I have no regrets, things have been hard, and I'm sure they always will be, but all the mistakes I've made in my life, all the times I've been labeled a screw up, I can say that I've done one thing right...the most important thing....I am a mommy first and foremost, now and forever. I wish you the best Mother's Day this year 2016. Never give up on Miracles.

Another April 8th Come and Gone

     It was April 8, 2007 when something happened to me that would change my life forever. It took me years to make the decision that I wouldn't let it rule my life, but every year on this date I am reminded what was taken from me, and I think about all the other women who have been through the same thing and haven't come out of it the way I have.
     I thought he was my boyfriend, he was coming over while my parents were in Arkansas to take me to my family's annual Easter get together where the little kids would hunt for Easter eggs, the other activities to keep the adults busy, and the big buffet to feed my very large family. I thought I was like a grown up, 21 years old I even made my own dessert to add to the dessert buffet like a grown up. I was going with a boy for the first time, and my parents weren't going to be there. He stayed the night, knowing that I wasn't ready or willing to take any steps in a sexual direction. He told me he respected me for wanting to wait, saying how if I wasn't sure he didn't want to pressure me...I believed him...I was wrong.
     When I went to sleep that night he was asleep on the couch in the living room watching "The Departed"and by morning I awoke to a half naked dude wrapped up around me. I didn't freak out at first, I thought maybe he was trying to wake me up nicely by cuddling up with me. We lay there for a minute, but it didn't take long for me to pick up on his intentions. He was hugging and kissing me and the next thing I know he had lost his bottoms and ripped my off as well. I told him no, I begged him no, but he didn't listen, and I was too weak and afraid to overtake him. All I could do was crawl out of my head and try to go someone where else until he let go away of me. I ran to the bathroom and cried when I jumped in the bathroom to wash off the blood, everything hurt so bad as I heard him knock on the door asking if I were okay as if nothing happened. It took me two hours to get him to leave my house and I basically fell apart, and thought I couldn't tell anyone because who would believe me, it had to be my fault, I was now dirty.
     My parents didn't notice I wasn't eating because of my anorexia I barely ate as it was, long sleeves covered up the cuts which weren't a surprise to my parents, but I was surprised they didn't notice I stopped sleeping in my bed. I would sleep curled up on my floor hating myself, blaming myself for what happened. I trusted him, that is why I allowed him to stay with me before we were suppose to go meet my family for Easter...big mistake. The hardest part was putting on a smile when my parents came home from Arkansas because I know they would some how not understand what happened to me, and it would be my fault. The weeks that followed sent me in a downward spiral...I wanted to die.
     If God hadn't gotten involved and sent me to Columbia to stay with my friend Sarah who had invited me to a retreat for a weekend. I remember getting there and going to for a walk to the park. As we were swinging it all started to pour out of me, out of nowhere I said, "It wasn't my fault", and my friend began coaxing me to get me to tell he what had happened, and by the end I started blaming myself, saying that my no must not have been strong enough, I didn't fight enough. She immediately stepped in and made sure my doc found out that I needed to see him and by the next afternoon I was sitting in the good doc's office as raw as I have ever been in front of anyone.
     "Did he rape you"? the good doc said quietly as I sat in the chair next to him not making eye contact with him or Sarah. When I finally told him what had happened I blamed myself and said I wanted to die. He had me escorted the ER, and eventually admitted me to the usually adolescent medical unit that I had been on for my eating disorder many times. He put me on suicide watch and anorexia protocol. Despite my trauma I had to eat my snack within a set time frame or I would be force fed. I wasn't new to this rule, but for some reason that night I decided it didn't apply to me, and each time the nurse asked me to take a bite for over a hour I just looked away. She quietly gathered up my tray, walked out of the room, and fifteen minutes later in walked in the on call resident. It was all too much for me that night, and I told them that tube was not going down my nose...a few nurses and docs later the tube was down my nose.  I had fought them with everything I had to stop that tube from going in, but they won in the end, and I knew if I pulled it out then I would be strapped down and it would go back in.
      For three days I sat in the hospital with a sitter in the room barely talking to people except the good doc and  two very good friends. When I was finally stable enough to leave the hospital it was only the beginning of a very long road of healing. I was constantly on edge, I couldn't handle being around guys that I didn't know, didn't like to be alone, and finally I got the gentle shove from my friends to go to the police department. I shared my story, which was even more complicated because it happened in a different county, and in the end I was given a bed in the Women's Shelter and a restraining order was sent to him. The process they put rape victims through is rough, lawyers try to corner you and intimidate you into backing off, but I was lucky to have someone called a DOVE advocate who stood with me and went clean off on the dirt bag lawyer who was trying to intimidate me. In the end the restraining order was granted, but again that was just the beginning.
      Before he was served with his restraining order the detective from the other county came down and had me to a cold call. I had to call this man that hurt me, all the while sounding calm. The goal of that call was to get him to admit that he heard me say no and he kept going anyway. We left that call thinking we had succeeded because he admitted to what he did, and I thought he would pay for what he did to me. Weeks later we sit in a room with the prosecuting attorney and a ton of other people, and they tell me despite the 'cold call' having a confession there was still no way to know for sure they could get all the jurors to believe that it was rape. I cried, fell apart thinking that it must have been my fault since they won't  do anything about it. The therapists at the shelter tried their best to help me through, but I fell into a really dark place.
     I lived in a dark place for a very long time, esp since only a few months after all of this happened my mom died. I essentially checked out. I didn't care about living....I was happy to let my anorexia have me, didn't care about cutting, and eventually didn't care about living. I became a walking zombie unable to really even show love to anyone, I didn't think I deserved to be loved, or that anyone could ever love someone as damaged and dirty as me. It was around that time that I attempted to take my own life.
     People who have never been in the situation where you are so desperate that you are willing to end you life have no idea what it is like. You aren't thinking clearly, you are in so much pain, and you think that you are doing the world a favor by taking yourself out of it. I never wanted to hurt anyone, I just wanted everything to stop. I was blessed that a friend found me and the ICU docs kept me alive, and I realized that God didn't think I was damaged or filthy, He was meeting me where I was ...laying hooked up to all those machines in the intensive care unit. That was just the first steps in realizing that I wanted to live and that what happened to me did not have to define me.
     Every year April 8 comes along, and though I have forgiven him for what he did I still find myself wanting to hide from the day because the wound never fully goes away, but it does mend. I spent years refusing to forgive him, but all that time the only person that I was  hurting was me because my anger and bitterness wasn't stopping him from living his life, so I had to let go. As I let go, I realized I could breathe a little bit more, and a little bit more as more time passed. And, here I am now writing this, sharing something with the world that I never thought anyone could know or they would think I was some filthy, worthless person. I've learned people don't think that. I don't think of myself as a victim of rape, but a survivor. I am here with a beautiful little boy and a husband, not curled up afraid of him anymore...I'm living a life and he has no bearing in it.
     If you are going through something similar please understand that it takes time and you aren't alone. I know that there are so many feelings and they come all over the place...one minute you want to cry and the next you want to destroy everything around you, and that is okay. Talking does help. My biggest issue was that I kept shoving it down deeper and deeper rather than letting it out, and I ended up almost ending my life. Please remember that what happened to you does not define you, you are still the same beautiful person you were before. Please keep fighting.

Being the mommy of a kiddo on the spectrum

     I've been working really hard to get my book started, but tonight I feel like I need to actually make a blog post rather than focus on my book. Things have been very hard lately, being a single mom who is battling a debilitating illness while trying to be there for her special needs five year old can be overwhelming. But, as I sit here with my baby in the crook of my arm, he climbed up a few minutes ago and just snuggled up to me and wanted some lovin from his mommy. It melts my heart when he dose this, and it has been happening more and more lately. There are some moments when I am overwhelmed and crying, and suddenly my beautiful little man climbs up next to me any makes my whole world seem right again.
     My beautiful little man was diagnosed with ASD last month, and for those who don't know what that means to put it simply Autism Spectrum Disorder. I've learned over days and nights of research that there is nothing simple that diagnosis because every kid on the spectrum is different. I fell apart the night I found out that my son would battle autism the rest of his life, I looked at it like a bad word...I was naïve, and I had bought into all the stereotypes that I now can't stand after all I've learned in just the last month. I decided the night as I cried my eyes out that I would allow myself to grieve and wallow in my misunderstanding, and the next morning I would 'mommy up' and focus on helping my son get whatever help he needs, and to help me change my parenting style to help him them best.
     So, I will tell you that I read and read everything from medical texts to personal stories from other parents. I even learned at Damien's speech therapy that I am apart of a club I never wanted to be in, but now I feel very lucky to be in the club. When you have a child on the spectrum the best support you can get comes from those who know what you go through and can help you because they have been in your shoes. They understand that when your little one has a meltdown it isn't because he is just being bad, it is because he is overwhelmed by sensory overload, and our world can be very scary to his world. It was then that I realized the first thing I had to change. I had spent so long being frustrated, thinking that maybe my son was acting up just to act up, not knowing what he was going through, and then we found out that he is on the spectrum. At first I thought that was the most horrible news to find out that your baby will have to struggle and learn things differently, but after the tears you start to learn that autism isn't a bad word, and my little boy isn't diseased. I learned that he sees the world differently that we do. At that point I had the choice of trying to force him into my world or turning the tables and joining in him his world. It took me about three seconds to decide that I wanted to be in his world, I wanted to understand the things that he has going on, and I wanted to open up my mind and my heart to him, and not care what society expects. I want to be invited into his world, and it has changed everything I've ever known about parenting. I no longer find myself losing my temper when he acts out, I don't care if people stare in public, and I have just calmed down completely learning how to take things one step at a time and not freaking out over nothing. I feel like I've gotten even closer since his diagnosis because I understand more of what he is going through.
     People tell me how they feel sorry for me and I don't understand that because now that we know that he is on the spectrum he has been able to get into programs to help him. I've learned that he is very high functioning autistic, our main issue is the speech delay, but I've been told by his speech therapist that it will take time, but he will talk. For now I'm learning how to speak and use sign language along with picture cards, and I'm so proud how quickly my lil man has caught on to signing. I am so proud of him. He has been going to pre-school for the past three weeks and even the teachers can't believe how quickly he has caught on to everything, and everyone has noticed a huge difference in my lil man...he has calmed, he is less aggressive and willing to listen and wait for our next activities, and overall he has just grown up quite a bit in such a short period of time. He is so cuddly and sweet, he comes up to me and gives me big hugs and kisses for no reason and I love it. I love seeing him get excited as we get ready to go out and meet the bus every afternoon.
     I will be honest that there are times when things are overwhelming, some days when he is melting down I want to cry because I desperately want to understand what is going on. I've learned to watch for sensory overload because sensory issues are very common with autism, and Damien has a sensory disorder that scares me a lot. He doesn't feel pain the way a normal five year old does, my son can scratch himself to the point of bleeding down his leg and not even cry. That is a very scary thing for a mommy to have a little guy who doesn't always tell you when he is hurt. He will let me know if he is hurt badly, but I am his mommy and I want to know what is wrong even if it is small. I find myself start to cry some days because I know we have a long road ahead of me. I've been blessed that his speech therapist goes our of her way to talk to me about everything and she assured me that the next year will be the most intense and hardest for us. We know that he will be in an autism room when he goes to kindergarten and I am so happy that we live in a school district that offers that because so many people think that autism means that he is slow or can't understand what "normal" kids can, but that isn't true. My son has a very high IQ and is very aware of what you are talking to him about, and he catches onto things very quickly. I have realized that so many people have these preconceived notions about autism and most of them are very wrong, and I was guilty of believing those lies. I've learned so much from my son and the many great people from his school and the Thompson Center, who goes out of their way to help kids on the spectrum in every way possible. It never fails on the days that I am overwhelmed and want to cry for my baby I get to talk to another parent or teacher who tells me how many great things I have to look forward to, and I am able to keep going forward.
     One difficult thing is that I'm doing this as a single mom for a few months, and I desperately want to help my family understand about Damien's diagnosis. I want them to know that autism isn't a bad word, and explain that Damien is high function on the spectrum, and he may be on the spectrum, but I have learned how awesome he is...more and more everyday. People often don't see how special these kids are, they are so smart, funny, and have great personalities, and all it takes is stepping into their world rather than pushing them unprepared into a world that terrifies them. My son is teaching me things everyday and I feel so blessed to have him. He doesn't know that he is autistic, he just knows that he is happy being him, and when he is upset I am learning how to help him through it because I can understand why he is upset. I love my lil guy more than anything in this whole world and I know that he is going to do amazing things. We have been focusing a lot on music because he loves it (just like mommy). I thought we had nothing in common and now I see we have so much in common. Are things going to be harder for us...yes, but that just means we have to work together and I know that my lil man will have the best life I can give him.
     Having a child on the spectrum is tough, and you have to be willing to change the way your parent, the way your approach your child, get use to the different treatments you have to do, diet changes, and the biggest thing is focusing on routine. I am working on posters and other fun ways to help him keep track of his routine and an award board for when he has earned a good week. He loves helping me do crafts, and to see that smile on his face all the time makes me so happy. He is my miracle, my blessing, and I don't see  the fact that he is on the spectrum as some life ending diagnosis. It is just about learning more about Damien's world and how he learns and helping him learn about the world outside of his, and I feel blessed that I am here to help him every step of the way. I will always be here for him to crawl up in the crook of my arm and snuggle until he falls asleep after a hard day of school and speech class. His smile lights up my world, on the days that my own disease has me in so much pain and struggling I can look up at that smile, and then he gives me a huge hug and kiss with a smile added in and my whole world is all better. My son is the most special person in my life, and that means more to me than any boring 'normal' world. I am blessed to have my miracle here next to me.
     If you didn't know already, April is National Autism Awareness Month and I strongly encourage you to take a few minutes and learn about Autism Spectrum Disorder. Just like I say about raising awareness for eating disorders and gastroparesis and short gut...things won't change if people lack the education. I was shocked how uneducated I was about ASD. I cried and cried that first night because I thought my son had no life ahead of him, but after doing so much research, all those myths in my head have since gone. I learned that my son has a great opportunity at having a great life. He can learn anything everyone else can, and he already had an almost genius IQ. I learned that speech delay is very common with his dx, and that with the proper help he will be just fine. The biggest thing is not giving up and making sure, as his parent and caregiver that I give him every opportunity available to him. I strongly encourage you to check out 'Autism Speaks' online, they even have a facebook page. You can learn so much about ASD and you would be surprised how many kids and even adults are on the spectrum in some way or another. We need to raise awareness. My son is the coolest, most happy kid I know, and I am blessed to have him snuggled up with me right now...I wouldn't change a thing. If you are looking to a worthy cause to donate to please consider donating to Autism Foundation. There is still so much for us to learn about autism, so many treatments that need funding, and so many kids and people will benefit from donations. I was just as naïve as everyone else, and there are times when I am still overwhelmed and have no idea what I am doing, but there is so much support out there for me and for my son.
     If you are a parent who has a child with ASD, and they are newly diagnosed I can tell you I understand where you are. I blamed myself, thinking I did something wrong, but I learned quickly that it wasn't me. The first thing is acceptance, and not looking at this like it is the end of the world because your little one is the same as they were before some doctor told you about ASD. We all stick together, and our kids are all absolutely amazing. There are so many programs that are available for our kiddos and for the parents. Please keep fighting and take the time to see where your kiddo is coming from. Learning about Damien's ASD diagnosis changed me for the better (after my initial meltdown). I no longer lose my temper the way I use to thinking that he was just trying to be difficult, now I know he is overwhelmed and frustrated that I don't understand, and I am lucky now that he is letting me into his world, and the more that happens the closer our bond becomes, the more he trusts me. Everyday I am so proud to be his mom, he catches onto so many new things...everyday he says a word or picks up a new sign or uses his picture cards I can't believe that it has only been a month and he has come so far. I am so proud to be his mommy.