Where To Go From Here?

I am at a really confusing point in my life. I don't know how I got here and I sure don't know how to get back. I used to be a fairly motivated person. Had dreams, plans, goals all that good stuff. I haven't even thought about any of those things since the age of 19, when I found out I was pregnant with Kole. I started school right before I found out I was pregnant and sure wasn't going to let this get in the way of me finishing. Women have babies all the time and complete their college education. Hours after Kole was born, I knew this was going to stand in the way of A LOT of things. I was okay with this. My only responsibility was to be the best mom I could be to this precious new life, who needed me every minute of every day. For 5 years I pushed through these low points, pushed past the need to find myself, heck I could barely take care of myself at times. It's always been, and still is, about taking care of my family and our home. This may sound dreamy, not having to go to work and being able to spend all of my time with the people I love the most. In reality, I AM EXHAUSTED! More mentally than physically. I don't think you ever really realize how much goes into caring for 2 children, 1 with special needs and a home,( Not to mention the love of my life and our pets, and all the other normal everyday struggles) till you do it every single day!!! There isn't a day that goes by that I feel accomplished, that I completed everything that needed to be done. It is never ending!! Because of these feelings, I feel guilty about staying home, like i'm not taking care of everything anyway so why stay home? On top of that, I feel very unappreciated. I feel I am EXPECTED to do all of the things that I do because I don't have a job. Like this is my punishment for not being a contributing member of society. So because I feel like no one is going to appreciate what I do anyway, why do it? Only stay at home moms truly appreciate all the effort and energy that goes into it, I feel like other people look at us as "lucky". We might not have to leave our house and go to our job, and we might not get paid to do what we do, but believe me WE BUST OUR ASS! Another thing, people who work get to clock out, be done for the day. I am always on the clock and am never guaranteed a break. All of these feelings have caught up with me and I am now ready to find out who I am and what I want in life. I don't know how to do this? I don't know where to start? For as long as I can remember I wanted to be a nurse. That was always the plan, go back to school and become and LPN. As of today, I don't feel like that is what I want to do anymore. May sound selfish, but I am downright tired of caring for other people. Maybe later in life, after i've taken some time for me, I will have this dream again, who knows? How do I begin to figure out what will make me happy? And how do I balance making myself happy and doing what is right for my family? I have no one to rely on as far as taking care of my kids for me. So I have no time to pursue whatever my dream may be. It is all a bit overwhelming right now. I know this will take a whole lot of time, I just hope I don't begin to lose myself even further during this time. Please do not take this as me complaining about taking care of my family or not being happy, I am just feeling a little lost in this big ol world.

The Weight Of The World

Okay, so this blog isn't completely about autism or even my son. It's more about me and how lost I feel on this journey. I never in a million years would've guessed that I would feel so abandoned and alone. I've always had a very close family life.We had our struggles (a lot of them) but no matter what I knew I could depend on my family when times got tough. These days I'm not to sure where to turn. I have A.J., I pray everyday that he will never leave me. We have been on this journey for six years TOGETHER! I don't think I would have made it through a lot of the hard times without him. I just feel so bad that I ALWAYS burden him with my emotions, which sometimes, are overwhelming to say the least. I don't want to be the nagging, crying, emotional wreck, that a lot of women turn into after so many years. But I don't fully have anyone else. I say fully because I know there are people I could call and vent to. But I never really get their full attention. There is so much going on in their life, that I'm kinda swept under the rug. I always hear, "I don't worry about you, I know you are doing good and will take good care of your kids." But that doesn't mean that I don't need them, just because most days I plow through the stress and hold my head high! I have gone through A LOT in the past couple of years. There have been many times when I questioned my sanity (seriously!), I didn't know if I would be able to drag myself out of bed and go through another grueling day. I have so much pain and anger that I've never gotten to deal with because I have to be strong and have no opportunity to work through it. I hate to put it this way, but when all of these issue's with Kole came up after his birth, I mourned. I mourned for the "normal", "happy" life me or my son would never have. I mourned the son who was going to grow up, go to prom, have girlfriends, get married, have kids, I lost that son when all of this was revealed. I am in no way saying that Kole is not the son I wanted, only he is not the son I assumed I would have. There is a lesson to be learned from that! Don't assume that everything will always go as planned, instead plan for the unexpected! I don't know how to deal with these deep seeded feelings. They are always there no matter how big I smile or how much I enjoy my children. And I don't have the type of support I, once again, assumed I would have. This breaks my heart. I, for the most part, have been a good person, with a big heart. I just naturally thought people would understand that I needed lots of support and help, and they would have no problem giving it to me, after all, that's what a family does right? Not only does this issue hurt me, but it hurts my children. They are not going to have that  big tight knit family that I expected they would have. Kole has not had any overnights or even spent a full day with anyone other than us in MONTHS. I lost track that's how long it's been. My heart shatters when I think about how that must make him feel. Just because his needs are different and their life is too unstable to handle him. I would think he would inspire them to get it together and want to do better, but I guess I am made different. I know I can give him all the love and support that he could ever need, it just hurts so bad to think that he will never have that special family bond with anyone but Me, A.J. and Kaydence. I always have hope that things will get better, but I'm not holding my breath. I also try not to hold on to any anger or resentment, this will only pull me down. I've learned to accept people for who they are, and not have any expectations of those people, so that I can not be disappointed. I take what I can get from them, when they want to give it. Even if it is only a half hour visit once a month, I try to enjoy it and feel that family bond for as long as it lasts. I have learned a lot from this. I now know how I want to raise my kids, and how I will NEVER make them feel. I will always dream big for them and support them 100% even if they are doing well and I feel like they don't need me to support them. They are what is going to get me through this. I will forever be in debt to my children for the priceless gifts they have given me, and I will work for the rest of my life to repay that debt, by any means necessary!

Doctors, Therapists and Appointments OH MY!!

     We knew bringing Kole home didn't mean he was out of the woods. We didn't know if he would EVER be out of the woods completely. After bringing Kole home we were set up with a whole team of doctors and therapists that were going to help our son be the best he could be. I couldn't have been more excited to get all of this worked out, or at least worked on, so I knew I gave Kole the best chance at life. I could have never imagined what the past five years brought us.
     It started with a few appointments at Hershey Medical Center. A pulmonologist, neurologist,   gastroenterologist, craniofacial surgeon, geneologist and a cardiologist. At first it seemed a bit overwhelming, but I figured we would get through them and move on. Boy was I wrong. Each appointment revealed a reason for a new appointment, with a new doctor, with a new treatment plan. At the geneologist they found that Kole had some kind of abnormality with his chromosomes, but they have never see anything like it before, so once again we didn't know what we were up against. This was emotional torture. It felt like instead of making progress we just kept adding to the list of problems. My heart broke every morning we had to get up and drive an hour to the next appointment. It actually became a chore. I can't tell you how many appointments I rescheduled, just to buy myself time untill the next heartache. Then I would feel the guilt of not taking my son to get the care he needed. It was a big, vicious cycle. Not to mention we had some kind of therapist in our home almost everday of the week, sometimes two therapies a day. Talk about feeling invaded. Our normal, everyday routine was out the window. This became our routine. I felt horrible. I felt like I was spending everday of my sons life trying to change him. It was as if I was saying the way he is, isn't good enough. It killed me. I wanted to enjoy my son. I wanted to make him laugh and make him feel loved. Instead I had to fight with him to make his legs stretch in a way they wouldn't on there own, or make him roll over, which was obviously uncomfortable. What do you do in this situation? I finally found a happy medium. I limited therapy hours and the time that I would work with him, so there was time left for me to just be his Mom.
     As for all of the appointments, they started to slow down after a few of the major issues were resolved. Kole had a surgery to repair his submucous cleft palate and tubes placed in his ears. This was one of the hardest things I had to do. I am terrified of anesthesia. I couldn't imagine how scared he would be when he woke up, in a world of pain, without his Mommy. They had me hold him when they gave him anesthesia. This alone was a very scary thing. I watched his little tiny body go limp in my arms. After seeing that I hoped and prayed I would never have to witness anything like that again, it scared the crap out of me. He came out of surgery just fine, a little groggy and sore, but fine. Kole was three and started to walk the day we brought him home from surgery.I was so thankful that for once something went the way it was supposed to. His next surgery would come when he was four. He finally could eat without his feeding tube, so it was time for that to go. It was a little bittersweet for me, after all it has been a part of him since basically birth. But we were happy to let it go and start a new adventure. This surgery was quick and Kole wasn't in too much pain afterwards. He was sent home that same day. After this, we finally felt like we marked a few things off our list.
     In between all of this Kole was hospitalized about 15 times for pneumonia. I couldn't stand to see my baby so sick. Poor kid would get fevers of up to 106 degrees and he would shiver uncontrollably. It was a horrid sight. Once Kole even had a seizure from how quickly his temperature went up. His father experienced this alone. It was on Valentines Day, I went to the pharmacy to get tylenol and motrin to control the fever, I stopped by the cards so I could pick one out for the love of my life and maybe brighten his day. It took me too long with the meds and when I got home, my roomate informed me that Kole had a seizure and Him and Aj were at the hospital. I couldn't even drive, I had to call my dad to take me. I couldn't help but think the worst on our way to the hospital! I also knew that Aj had to be a wreck, these types of things are not his strong point. Don't get me wrong he handles them well at the time but it takes a big toll on him afterwards. When I got to the hospital and seen that his seizure was over and his temp was under control, I took and minute to make sure Aj was holding up. He was so shaken up. To this day he says that was the scariest day of his life. After he was calmed down, I noticed Kole's belonging bag. I started to sort through it and found his little shirt and onesie had been cut off of him in the ambulance. This is what broke me. It was a representation of how serious the situaton was. They needed to be able to work on him RIGHT AWAY! Kole recovered just fine, as did we. The doctors informed us that it may happen again with the way his fevers are. Since getting older, Kole has a lot less hospital visits, but when he gets sick, he gets SICK!
     We signed Kole up for pre-school when he was three. Before school started he had to be evaluated to determine his level of learning. Again I was so excited to get him into this special needs pre-school, who knows exactly what he needs. At the end of the evaluation, we were sat down in front of the teacher and psychologist who performed the evaluation. They were going over information, it kinda went in one ear and out the othe, afterall we would get a copy of what they were reading. But then she said it "Your son has been diagnosed mentally retarded" I smiled and nodded like I understood and could handle the news, when really on the inside my heart hurt. This means he would never have a "normal" life that most parents want for their kids. It killed me to think, he may never get married, he may never have a best friend, he may never go to prom or play sports. It was crushing. Slowly we began to look at things differently and focused on the things Kole could do. No matter how small it may be to some people, it felt like climbing to the top of a mountain for us! We noticed in his 2nd year of pre-school he wasn't socializing or talking, so we were interested in having him evaluated for autism. These results were not a surprise to me, I knew what was going on with Kole. I couldn't be more proud of my son, he may not speak, but when he uses his go-talk to communicate with us it's a indescribable feeling. For so long we were sure our son would never be able to let us know his needs or wants and now, in his own special way, he could. He actually loves to tell us what he wants. Most of the time it's cheese curls and spongebob :) But were are happy to give him whatever he wants ( to a point of course) since he has to go through all of the trouble of expressing what he wants.
     We are now at a comfortable part of our lives. Kole is making small steps with the help of his pre-school. It's refreshing to see him progress, since we are so used to the opposite. I can't wait to see what all day kindergarten will do for him. I think a whole new world is going to open up for him and I can't wait. This is the begining of a beautiful part in life, where anything is possible and Kole will have the tools to do whatever he puts his mind to.

Introduction: My pregnancy - Bringing Kole home

     Let me start by introducing myself. My name is Niki. I am a 25 year old stay at home mom. I have two beautiful children one of which, was diagnosed Autistic and Mentally Retarded. I would like to use this blog to share my thoughts and experiences while living with this diagnosis. I have read many other blogs that have saved my sanity and showed me it is okay to have certain feelings, I am hoping to do the same for others :) 

     I found out I was pregnant on January 19th of 2006. I had many different emotions, but the one that stood out to me the most was worry. I didn't know what kind of mother I would be. I know that I have a big heart and love caring for others but this was bigger than that. I had to get ready to have another person completely dependent on me and my choices. I had to get ready for all the hard times and heartbreak, because, as we all know, life is not easy! As the months went by the worry faded and excitement grew. I knew I was ready to love and care for this new life. I read books, talked with other parents. I was ready for whatever life threw at me,or so I thought.

     On August 22nd of the same year, my water broke about a month early. I couldn't believe that this day had come already, after all I was supposed to have a whole month to prepare. We got in the car and during the short time it took to get to the hospital, I became prepared. I was a little nervous with the baby being premature and all, but I knew the wonders that doctors these days can work. Once I was all settled in and labor started I could focus on nothing but getting this child out. After 22 hours of labor my son, Kole, was born at 5lbs 2oz. Immediately after giving birth they are supposed to plop your child up on your chest and you should take this moment to bond with your new baby! This moment never came for me. I knew something was wrong the minute they swept him right away from me and worked on him in the corner of the room. I asked if something was wrong and got no answer. After a few minutes of working with him, they swaddled him and brought him over to me, explaining I only had about 30 seconds with him because he had to be taken to the NICU. He was having trouble breathing. I honestly couldn't even enjoy those 30 seconds, my mind was in a completely different place. I wasn't able to go to the NICU to see him untill after my epidural had worn off, it took about 3 hours. In this time my boyfriend stayed with him in the NICU trying to figure out what was going on. I heard that he was having trouble breathing but as long as they kept him on his belly he was stable. I could not wait to get up there and find our for myself what was going on. Once I got to the NICU I found that they had Kole in a small room with only 2 or 3 other beds in it.They had him on his belly sprawled out. A nurse came in to talk to us. She explained that his tongue was large and fell to the back of his throat when placed on his back, so for now he would have to stay on his belly. I remember all I wanted to know was if my baby was going to live. It didn't matter to me if they had to hang him from his toes from a wash line, WILL HE LIVE?? My boyfriend and I asked the nurse if we should be worried. I don't remember her exact answer but I do remember that is was not comforting in the least! I think a simple "Yes" was her answer. Not "Yes, but we are doing our best" just "Yes be worried." So in my mind I was trying to prepare myself for the worst but no matter how hard I tried I couldn't prepare for the death of the most important being in my life. I cried for hours, it was the only thing I could do. 

     After 3 days, I was finally able to hold my son. We had to do skin-to-skin holding. My boyfriend and I had to take our shirts off and place Kole (only in a diaper) on our chest belly down. This was the most amazing feeling in the world. It was in this moment that I realized just how much I love this little guy. I didn't care what was wrong with him, I would do whatever it took to give him a loving and fulfilling environment.HE WAS ALL THAT MATTERED. That same day I tried to breast feed him, which did not go well at all. I was hoping to be able to get that awful feeding tube taken out of his nose. I could only imagine how uncomfortable it would be to have a tube in your nose the whole way down the back of your throat and in to your stomach. My poor baby. Because he was having this trouble feeding they were unable to send him home, in fact they were going to move him to a NICU at St. Christopher's Children's Hospital in Philadelphia. They were going to try to figure out what exactly was causing his tongue to fall back in his throat and making him unable to eat. I was nervous about going 2 hours away from home to a new hospital but excited for the possibility of getting this fixed and having a healthy baby.

     Exactly one week after he was born the new hospital sent an ambulance for Kole to be moved. I felt so uneasy about him driving on the highway for 2 hours with complete strangers. Me and A.j. (my boyfriend) went home to get our things together and quickly were on our way to meet our baby boy. When we got to the hospital Kole had not arrived yet. This turned my stomach. What happened, why aren't they here yet, how could we have left after them and gotten here before them. Something had to be wrong. Finally after 30 minutes they got Kole safely to the NICU. Now we could get started on finding out what was going on with him. Doctors researched new things everyday, and everyday we did too. As soon as they came up with a possibility we found out as much as we could about it. Different syndromes, genetic mishaps. Every new find broke our hearts. To think what our son would have to go through in his lifetime, as if this life isn't hard enough. We worked everyday to get him to eat and everyday nothing. After 3 weeks, the doctors came up with Pierre Robin Syndrome a birth defect where the individual has a small lower jaw, a large tongue and most of the time a cleft palate, which we would later find out that Kole had, and also acid reflux. Finally, a solid answer, something to work with. We felt a ray of hope come over us. Now to address the feeding issues. The doctors felt that Kole's small jaw and large tongue were what was keeping him from eating so untill they were fixed, either by surgery or naturally growing, he would be unable to eat.

      One month after arriving at St. Christopher's they placed a feeding tube ( g-tube) in Kole's belly and performed a Nissen for his acid reflux. A week after surgery we were taught how to use his g-tube and the same day, after his car seat test we were sent home. I was so happy and thankful that Kole had made it out alive. He made me so proud. In the same breath, I was terrified to be home with him, no doctors or nurses to tell us we were doing things right, or that his oxygen levels were okay. I remember the feeling in my stomach as we put him in the car and started on our 2 hour journey home, i could have puked. Everyday of that month I wanted Kole out of there so bad it hurt but on this, the day he was finally able to leave, I wanted to turn right around and take him back to the people who had taken such great care of him, I knew they could take care of him, but wasn't so sure if I could. About an hour in to our drive, it was time for Kole to eat, through his g-tube of course. We pulled over to the side of the highway and began our new life. The first time that I fed him, it gave me a feeling unlike anything I ever felt before. I was confident in what I was doing, I was caring for my child just like any other mother would, no matter what I had to do, no matter how unusual, I was going to do it. We made it home safe and from then on I let my instincts guide my care for him, I knew Kole would have the life I wanted so badly for him, and I was going to be the one to give it to him.