Miracle

     I will never forget the day when my doctor told me that I the chances of me ever being able to have a baby were close to zero. I was twenty three years old, early in my recovery from anorexia, and dealing with a devastating diagnosis called gastroparesis. The illness had progressed quickly and I started having problems with the tube feeds that were helping me to get the nutrition my body needed to live since my stomach no longer worked. I had a surgery that left me with less than seven percent of my stomach left, done in hopes of helping food empty from my paralyzed stomach. The surgery didn't work, made me sicker, and I ended up on IV nutrition called TPN. The doctor explained that I could barely keep enough nutrition to sustain my life,  rarely got my period, and being on TPN is dangerous. It increases the risk of dangerous line infections causing sepsis, and long term TPN damages the liver and sometimes the kidneys. They kept me on birth control because they said if I got pregnant I would most likely miscarry. I left the office that day heartbroken, all I had ever wanted was to have babies and be a mom, and now I was losing that dream. My boyfriend tried to comfort me, but there was nothing anyone could say to heal my heart in that moment.
     The months passed and life moved on, as it always does. I became engaged to my boyfriend, and his three kids came to live with us. I was getting to be a mom to a 3, 4, and 7 yr old...I loved them very much. It wasn't until their mom was granted her visitation that I had to face the fact that I loved those kids, but they would never be just mine, and as much as loved them like a mother loves her kids I would never hear them call me 'mommy'. They were so sweet to me, and the time they lived with us will always be special to me. On our first Mother's Day I had to send them to their mom's house and I was called into the emergency room because my blood work had come back bad.
     It was May 8, 2010, Mother's Day when I found myself admitted to the hospital with a blood infection from my central line where I was receiving my TPN. Sepsis has to be treated with high dose broad spectrum antibiotics usually. I was going to need three weeks of IV vancomycin to clear my blood of the life threatening bacteria. I remember my fiance talking to the doctor about risk of pregnancy since antibiotics can cause birth control to be ineffective, he was worried about the emotional and physical damage that could be done if I got pregnant and lost the baby. The doc said the same line we had heard before, that my body was too weak to support a pregnancy and we should continue the precautionary birth control. I went home after five days of stabilization in the hospital, and did my three weeks of IV vanc at home.
     These antibiotics do a great job of killing really nasty, dangerous bugs, but they also have some pretty icky side effects. I was so sick to my stomach from the meds alternating between throwing up and running to the bathroom. My head was killing me all the time, and when my fiance would cook breakfast the smell of eggs would have me retching. I ended up having to have surgery to remove my port and place a temp PICC line because the port had formed this sheath of infection coating it. So, I finished my antibiotics, it had been a little over two months since I had been admitted for my infection and I was headed to the doc to get cleared for another port to be put in. During the visit I told her that I thought I had a UTI and I just hadn't been feeling well, throwing up at the smell of things, and getting headaches all the time. She just laughed for a second and said that if she didn't know any better she'd say I was pregnant. She decided to run a pregnancy test with my UA, we laughed, and she told me she would call me to let me know if I needed more antibiotics. I couldn't even let myself think anything about the pregnancy test, I didn't want to get hurt anymore.
     As I walked into the apartment my phone rang, and I answered to hear my doctor sounding almost out of breath. All I could hear was, "You're pregnant"! I went silent for a minute, long enough for her to ask if I was doing okay. I think she was more freaked out than me at that point. She started telling me how much of a shock this was, gave me my first appointment with the OB, which was only a couple days away. She was using words like 'high risk' and 'viable', but all I could think of was that I had a baby growing inside me at that moment, something that I had been told was impossible. I think I scared the crap out of my son's father, who was waiting on a bus home after buying a new phone to replace the one he lost. I wouldn't tell him what the doctor said over the phone, and he was nervous thinking I was needing to go to the hospital again. When he came home he stood in the doorway just worried and said, "What's wrong"? He didn't expect the words that I was going to say and proceeded to drop his brand new phone on the floor after I told him. To be honest his response was, "Get the f*** outta here"! He thought I was messing with him, when he realized I wasn't he decided we needed to take a home pregnancy test too, which turned positive pretty much immediately. I spent the rest of that night and day just in shock.
     At that first doctor's appointment that everyone is always so excited about things became more of a reality check. Luckily, they did the ultrasound before we went into the doctor's office for the 'talk' that would come. I got to see that tiny peanut in my stomach, it's little heart pounding, and the lady told us that it looked like we were at about nine weeks as she handed us a picture and herded us into the office. As I was holding the picture and thinking about my baby the doctor asked if we were would consider terminating the pregnancy because of my medical situation. She said that it was very unlikely we would both survive to term. I got angry pretty quick and said that wasn't an option, I was 24, I had a miracle in my stomach, and I had to trust that God was going to get us through. When she realized it wouldn't work trying to talk me into ending the pregnancy she started talking about all the things that were ahead of us. I would have to go to the doctor once a week until 25 wks, and then I would start coming twice a week for a biophysical profile ultrasound and an NST. I was on IV nutrition at the time, and it was made clear if I got another infection that the baby wouldn't survive. So, at 11 wks I would be scheduled for surgery to have a J tube put into my intestine to go back on tube feeds to try and get me and baby enough nutrition. I would also need to forms of insulin to manage my blood sugars that were all over the place from unnatural nutrition. It didn't matter to me what I had to do, I was going to get this baby out safely, even if it meant I would lose my life in the process.
     I had been placed on IV nutrition because I couldn't tolerate tube feeds anymore, the pain was so bad it would leave me curled up on in bed crying while I tried to get minimal tube feed formula into my intestine that would "dump" out before having much time to absorb. Having a central line puts you at risk for blood infections that can be deadly, and TPN makes those chances even higher. We couldn't risk it during the pregnancy, esp since it was an infection that led to this pregnancy. As I drifted off into anesthesia land the day of my j-tube surgery I was terrified. How would my little baby react to the poking around, moving intestine, and shoving another tube into my small intestine. When I woke up the pain didn't matter, I kept asking about the baby, and no matter how many times they said that his heartbeat was good it wasn't enough. They ended up having to show me an ultrasound before I calmed down. I had complications after the surgery, that I had never had after that surgery before. I was violently throwing up, eventually I started throwing up black, which surprisingly I didn't end up needing more surgery or even blood. The pain was so bad even at the lowest rate I had to take pain medication. I cried for hours feeling like  was a horrible mom, how could I expose my child to narcotics. My OB was great during this time, she calmed me down as much as I could be, explaining that we had to do whatever we could to get the baby and me nutrition. I wasn't gaining wt and out little boy (we found out during one of our many ultrasounds) was measuring small. We would have to do whatever we needed to make sure that he could get what he needed to grow.
     After that surgery I had to spend most of my time in bed, only getting up and around to go to doctor's appointments and special activities. We made it to 23 wks, meaning we had a viable baby, then we made it to thirty weeks, and we beat all odds when we arrived at 37 wks, which is considered a term baby. My original due date was going to be March 2, but the c-section was scheduled for the last week in Feb at 39 wks. It was February 17 when we went to our normal doctor's appointment for an ultrasound and NST. I wasn't having any signs that my body was going to go into labor naturally, we were just moving along anxiously awaiting our c-section date. Who would've guess that things would turn completely upside down that day.
     I was laying on the table looking at the monitor in awe of my amazing little miracle when I noticed the ultrasound tech had a look on her face that wasn't her usual cheery smile. When I asked her what was wrong she explained that our little man wasn't responding, he wouldn't move, or practice breathe, the only score he got was for having a heartbeat. She buzzed my belly trying to get his attention, and when that didn't work she left the room with a quiet, "I'll be right back". When she came back she told us we were going down to triage where they would monitor baby for awhile. She saw my concern and tried to reassure me and told me that there was a good chance I would be meeting my son that day. My fiance did his best to reassure me and held my hand as we took the elevator downstairs.
    I'm not stranger to the ER, so it wasn't like I was shocked when they pulled us into a tiny room and took my blood pressure and pulse. I expected to go in another room and be hooked up to a monitor when I looked down and saw on the paper work the words written in ink pen in all caps "STAT C-SECTION". In that instance I went from desperately wanting to meet my son to panicking. I suddenly wasn't ready, we hadn't brought anything with us, this wasn't supposed to be happening right now, would I be able to do this, to be a good mom? Josh tried very hard to calm me down and hide his own anxiety as we were hurried to the lab, and then rushed from the lab after a phone call for labor and delivery telling them they didn't want me to wait to get labs, I needed to be upstairs asap. When I got there I was suddenly surrounded by nurses and residents asking questions, hooking me up to monitors, trying to get an IV, and all the while I was just trying to breathe because I was terrified. So terrified that I actually started to contract pretty consistently and not even realize it until the nurse pointed it out. They explained that if baby started to move a bit we could wait two hours for my doc to get there, but if things didn't look good I was going to the OR right away. Luckily, he started moving a bit, which allowed Josh to run next store to the grocery store and buy a disposable camera since we had nothing and the gift shop was completely out. Him, being the sensitive guy he is came back with three beverages and a sandwich for himself. My nurse called him an ass for drinking and eating in front of me, which honestly wasn't the most important thing on my mind. My parents were on their way from two hours away, both thinking we had another week until baby came.
     At noon I was ushered into the OR where I quickly had a spinal block placed and was prepped for surgery. Me, being the weirdo I am, asked if I could watch my son be born. My doc told me that wasn't a good idea, which again I argued that if Josh could watch then I should be able to. She quickly came back by reminding me it wasn't Josh's guts that she was going to be cutting into. It's absolutely amazing how fast they go from prepping you to delivering the baby. It was 12:34 when my beautiful Damien was born to the song Rockstar by Nickleback, weighing in at 6lbs 10 oz, and 19 in tall. He cried like a champ, and I fell in love when Josh brought that amazing bundle over and put him on my chest, those beautiful blue eyes were just gazing at me, he knew I was his momma. They had said he would be too small and need to be in NICU for that and because he would have to be weaned off the narcotics I had to have during my pregnancy. By the grace of God those doctors were absolutely wrong, not only was my son born at a healthy wt, he had no signs of narcotic withdrawl, and blood work showed no narcotic levels in his blood. None of the doctors could explain it. Our son was miraculous and absolutely perfect.
     What caused him to be unresponsive that day, the official word was that I was so small that he just didn't have any room left to really move, and he wanted out. In the recovery room my doctor said that she couldn't say for sure, but she thought Damien knew I was in bad shape. We found out with the blood work that day that I was completely malnourished, dehydrated, my labs were not good at all, and my heart was having long QT issues. Damien had taken every little bit of nutrition I could get in, which is what I wanted. The doctor called him a little parasite, which I was initially offended by in my emotional state, but I got over that. My heart could have given out even with our scheduled delivery date a week away. I believe Damien saved me, after he was delivered they were able to correct all the electrolyte issues and get my heart stable. I spent over twenty four hours resting and then I was able to get out of bed and do more with Damien without help.
     Damien is my miracle, against all odds that little boy made it. He changed my life, saving me in every way a person can be saved. He may have saved my life the day he was born, but he saved me from the person I used to be. I had just barely gotten into a stable recovery from my anorexia when I found out I was pregnant with Damien. I was struggling with keeping my recovery and dealing with all the chronic medical things I had going on. I was learning to accept that I was going to battle my body for the rest of my life, always needing feeding tubes and IV lines to stay alive. I had wondered what was the point of recovery if my body was going to be sick forever, I didn't know what the point was of fighting. Then I found out I was pregnant with Damien, and I had fight for him, my body had to keep him alive, and bring him into this world healthy. It wasn't until the second night in the hospital, Josh had gone home to the other kids (my step children) and it was just me and Damien. I was holding him, talking to him about things, he looked into my eyes, and he smiled. I knew at that moment the past was going to stay in the past. I couldn't ever let that demon back in control, let my son see the miserable person I was before, and I sure as heck wasn't going to let him see me on an eating disorder unit. I promised him that I wouldn't leave him, that I would fight, and do whatever I had to do to make sure that I was there for my baby. It has been nine years and I have kept that promise. Damien has blessed me in more ways that I can even put to words. There is no doubt in my mind that he is a miracle, not only because he proved all the doctors wrong by even existing. He is a miracle that gave me the strength I didn't know I had to fight everyday for my recovery, to realize that I was more than all the bad things that had happened to me, that I didn't have to punish myself anymore, and by making me a mom he helped me realize that I was a survivor. Being a mom there is no time for me to feel sorry for myself and the fact that I am sick. I have to fight because I have a child that needs me, and he brings a light into my life I didn't know what possible. If you doubt  that miracles can happen, I have a living, breathing one smiling at me right now.

The "Diagnosis"

     Damien made is entrance into this world on February 17, 2011, and in true Damien fashion he did it his way. Damien is a miracle, me being chronically ill the doctors all said I would never be able to carry a baby, heck they didn't think I could even get pregnant. I went in to see my doctor eight weeks after being released from the hospital for a blood infection to make sure that I was stable enough to put a new port back in for my iv nutrition. I mentioned to her that I had been more getting sick to my stomach more than usual, esp at the smell of eggs. I remember her kind of smirking and saying the same thing I'd hear many times before about there not being a chance I was pregnant. She decided to do a pregnancy test to appease the situation, and when she called me to tell me that I was pregnant as I walked in the door to my apartment later was more shocked than I was. 

     My pregnancy was was labeled 'high risk', at the first doctor's appointment it was brought up that we consider terminating the pregnancy because the chance that it would cause my conditions to worsen or even kill was extremely high. There was no way that I was going to make that decision, all I wanted my whole life was to be a mom, and I made the decision to trust God to get through. I had major abdominal surgery at 11 wks to put a feeding tube in that would replace my IV nutrition. We couldn't risk another infection that would surely kill the baby. Because my intestines are so badly damaged I had to be on pain medication to get the proper amount of nutrition to keep both me alive and the baby alive and growing. I was so afraid, laying on bed rest for seven months except for our twice a week doctor's appointments for ultrasounds and NSTs. I was on insulin, in horrible pain trying to get Damien what he needed to grow, and the whole time terrified that I would lose my baby. Turns out Damien was a rock star even before he came into this world. 

    Long story short, Damien shocked the world when he was pulled out of my stomach (flashing the 'rock on' sign) weighing in at 6 lbs 10 oz and 19 inches long. They had predicted he would be in NICU because of low weight and me being on pain medication. After testing they discovered he had zero narcotic in his system, and he was healthy as can be. The first time I looked into those beautiful blue eyes I was hooked. Damien has a way of making you fall in love with him, he did it as a new born with every nurse on the floor. He was an absolute miracle, he was strong enough to survive all the obstacles that were put in front of him, and he didn't just jump them, he demolished them. 

     The first year of his life he was just an amazingly happy baby, and he was always way ahead in his development. He said his first word at seven and a half months, which to my anger (lol) was 'dada'. He rolled over early, crawled early, and walked at ten months. If there was anything to complain about it was the fact that this happy lil man did not sleep. The first four months he didn't sleep because of colic, but after that it seemed like he just wanted to live his rock star lifestyle. He wasn't cranky, he would keep sitting up and smiling or 'talking' to stay awake. For the longest time he slept in a bouncer because it helped with his reflex and he liked it, the doctor said it was fine before anyone out there tells me that wasn't good. When your child doesn't sleep believe me you will let them sleep wherever they want. He would peek up and check to see if what you were doing, and if he made eye contact he would give you the sweetest smile and giggle. How are we supposed to resist that? It wasn't until nine months or so that he took to his crib, which he later thought was for jumping rather than sleeping. 

     When I look at the video of him eating his birthday cake on his first birthday it is both amazing and heartbreaking for me. He is so happy and talking to us the whole time smiling and saying, "num num dada". Everything was so amazing and seemed perfect, I had no idea what was going to happen. Slowly but surely I watched my little boy change over the next year, losing his words, and wanting to isolate in his room all the time. For a long time I tried to convince myself that it was nothing, maybe just a phase he was going through. The doctor even brushed it off at first saying it was just him acting out because I was spending more time in the hospital with my chronic illness than I had since he was born. I was naive and let the doc and my son's dad to convince me that I was overreacting. 

     By the time he was three it was obvious that something was wrong, and I wasn't doing my son any favors staying in denial. At the time I had no idea how difficult it would be to get him evaluated. We got the referral to the Thompson Center, which is a nationally known center for autism and other neuro-developmental disorders when he was just shy of four years old. Over the next year I noticed more behaviors that I now know were stims, he would repeat the same part of a movie over and over again, hand flap, and a few other things. He was also acting out very aggressively because he couldn't communicate his needs, so he learned negative ways to get what he wanted. He was on that waiting list to be evaluated for over a year. We were able to get him into speech therapy there, which four is older to be just starting speech therapy. The first thing we had to do was break all the negative habits he had developed to get his way, he had to learn that he would be rewarded for positive things and receive nothing for negative behaviors. Around this time he also started pre-school at Early Childhood Special Education. For the first time I saw him begin to thrive. He started picking up signs to help him communicate. But, we were still waiting on the evaluation.

    Finally, in March 2016 we finally got a date to show up for his eval. The eval lasted from 7:15 in the morning until 2:30 in the afternoon. After the evaluation was done I was handing a piece of paper that listed my son's diagnosis as Autism Spectrum Disorder with speech delay. I tend to lump sensory processing disorder in with the ASD diagnosis. Seeing it typed out in front of me like that hit me harder than I thought it would. I wasn't in denial before the eval, I knew he was autistic, but suddenly it was real. My little boy was going to have to struggle to learn to do the things that neurotypical kids do without thinking, I didn't know if he would have a life beyond living at home with me, and it just broke my heart. I worried so much that when people described him they would always say, "The boy with autism". Instead of just seeing beyond a stupid label to Damien, an amazing smart, funny, and sweet little boy who wins over everyone he meets. 

     I was staring at that paper and the huge binder they give newly diagnosed children and I felt like I couldn't breathe. At the time I was recovering from surgery so Damien was staying with a friend of mine, which was a good thing since I was losing it. I fell to the floor and started sobbing, I was crying for all the things that my son probably wouldn't get to do, how the cruel world we live in would judge him, and how I let him down. I blamed myself, I must have done something wrong because he was perfectly fine until he wasn't, until he withdrew into his own world. I made the decision on the floor that I would let myself grieve for the loss of the life I had planned for Damien for one night. In the morning I was going to get up, start learning everything I possibly could about autism, and help my son create a new life that he could feel comfortable in. 

     Since that night almost four years ago we've done just that, helped Damien carve out his on path and place in this world. I have learned how to be in his world, and slowly he's been introduced into ours. All the books in the world couldn't teach me what Damien has taught me over the years. He sees things as they are, he doesn't make decisions based on what he thinks will make everyone happy, he is genuine. When he comes up and gives me a huge hug with that adorable smile on his face he's doing it because he wan'ts to, because he loves me, not because he is trying to manipulate me into doing something.I will say that he has leaned when he is about to get in trouble of he holds his arms out and puckers up his lips for a kiss I will most likely laugh and he'll be off the hook lol. He has started saying more words (momma is my fave), using a tablet to talk, signing, and his teacher and speech pathologist heard him singing on the bus during their last field trip. He loves learning, but takes after me in that he is a perfectionist. He is doing amazing esp being diagnosed so late. 

    If you're child is newly diagnosed or getting evaluated you aren't alone in what you are feeling. It's okay to mourn the life you expected your child to have. It is overwhelming, all the information that gets thrown at you in the beginning. All you want to do is the right thing for your child, but at the base of everything they need love and patience more than anything. I didn't know how patient I could be until I had Damien. Its okay to be angry and sad, but don't blame yourself. No one did anything wrong, your child's brain is just wired a bit differently than most. I immediately found resources after Damien was diagnosed, I knew as a single mom I wouldn't be able to afford all the specialty things that would help Damien. We have an agency in our county that will work as an advocate for Damien to find the best therapists we can, help pay for things like a crash pad or body sock to help with sensory overload meltdowns, they have provided me with DVDs to learn sign language, she got us approved and wait listed for an aide, helps pay for theraputic riding along with other activities, and so much more. There are tons of resources out there to help, you aren't alone. I joined a support group for moms with special needs kids, and even started my own facebook page Damien's world #spreadingautismawareness. The paper with the diagnosis doesn't mean anything, it doesn't change the fact that our kids are capable of amazing things. Damien is a super happy kid that knows he is loved by all the people in his life, he has a great program for autism at school, and he makes so much progress everyday. He isn't aggressive anymore except on rare occasions. I no longer feel sad about what his life could have been because I know he has an amazing future, he is so much more than some diagnosis.

           "Autism isn't a disability, it's a different ability"!