I have always wanted kids, even at a very young age. I loved playing with my dolls, pretending I was married, cooking, cleaning and playing with my pretend kids. I guess you could say I got that from my mother. I am an only child, so I had my parents to hang out with, and I was around adults a lot more than other children, so, you could say, I grew up a little faster than most. I got with my now husband when I was 18-years-old. I was a good girl, for the most part, had a great relationship with my parents so they always knew where I was going and what I was doing at all times. I had been in love with this guy from high school ever since I was a freshman. We were in marching band camp and all other bands that we had offered to us. I got to spend all summer with him, watching him from afar, hoping and thinking one day I could be with him. As years past, he was just a friend, but I never gave up my crush. When I was 16 I got with a guy that was five years older than me, and before my now husband, was the longest relationship that I was in. I finally got my chance to be with my now husband in 2006 after my ex and I had broken up exactly one month before. We acted like the teenagers that we were, late nights, had jobs, moved in together, and got engaged within just a few months. I knew that this was it, this was going to be my whole world and I couldn't wait to start a life and have kids with him.
We started trying after about six months, and I finally got pregnant in November of 2006, at yes, the young age of only 18. I called my parents up right away, after my second pregnancy test, and my parents were excited, but scared. I was scared too, not because I was pregnant, but because of the society that we live in. You can't do anything without being judged anymore, from walking down the street wearing different styles of clothing, to your piercings and tattoos. I was the first to get pregnant out of my 2006 class, but I wasn't liked much anyway, so I knew what was coming. I tried hiding it for a long time that I was pregnant, which I regret still to this day, and hardly have any pictures of my first born while I was carrying him. That is something I live with time and time again, and why I take so many pictures with him every chance I get. The comments were hurtful, the worst one I remember ever getting was, "is it an accident? If so, you are going to abort it right?" I was pretty far along at this time, mind you, showing well and working at a local Wal-Mart as a cashier. I could never even imagine someone doing that to themselves and their unborn, but in this crazy world we live in now, it's the new thing, like white on rice if you want to say.
Months went by, as I got more and more excited every day to see my baby! The ultrasounds just made it even more real, and as I went into the hospital, prepared to have a vaginal delivery, I did get more and more scared. I was not feeling the contractions, which I thought was odd as they kept showing up on the monitor, and the nurse kept asking if I felt anything. I had no drugs in me at all by this time, so I was getting a little worried. I then started questioning them, until I remember the nurses getting me prepared to get injected by drugs, and then telling me I need to get an epidural right now. The shakiness in the one nurse's voice about through me over the top, as I climbed to the edge of my bed, ready to endure what would be the worst pain of my life. I cried as they just keep trying to hurry, popping the needle in and out of my spine. My husband had no idea what was going on and was asked to leave the room. I was wheeled out in the bed, down to the delivery room, as our families and friends sat in the waiting room. I see a doctor, which was not mine, run in wearing jeans and a shirt. I thought to myself, this must be her day off, I wonder why she is in here and running. Little did I know at the time, she was running towards me, grabbing gloves, a mask, and her white coat. I was rushed into the delivery room, as I keep asking where my husband is. No one would answer me, like I was not even there, they just keep trying to knock me out with the medication. I finally received an answer, which was not true as I found out later, that he was outside smoking. No one would ever leave a room when their wife was having a baby to smoke, in reality, he was outside the door trying to get in and no one would let him in.
That is when I knew something was definitely going on. As they started to cut me open, I felt scared, cold and alone. I was in room full of people I didn't even know, even my own doctor wasn't there, I was doing this all by myself and I was only 19 years old. When he came out, I didn't hear him cry, I kept asking everyone, "why isn't my baby crying? why?" again no one answered. Everyone just kept trying to drug me up so I would go to sleep and not ask questions. That's when I heard him, and I was thinking to myself: "He's crying I get to hold him soon!!" That's when the most defining sound in the world came across the room, a hush, a silence, time stood still in my mind, for that split second, I knew, he wasn't alive again. I heard them trying to work on him, while not hearing anything at the same time, my mind wandered, and I knew, if he lived, this is going to be a difficult, long road ahead. I come back to realization, and heard him cry for the second time, and just keep going. Just maybe, he will be okay after this, just maybe. He was immediately taken from the room and away from me, as they cleaned me up, and I laid on the bed, rolling down the hallway as the lights passed me by, back to my room, where my husband was waiting. I didn't get to see him forever and ever it seemed like, and finally, they came down to me and said I could see him, but only through a glass window. I just didn't get why, every movie, every television show I ever watched the moms and dads could hold the baby right after, but we weren't allowed. He was in NICU, when we got there, with a little sign on his bed that said something like "Hi I am Dale Jr., I don't feel well right now, so please don't touch me until I am better." He was hooked up to the heart monitor, and oxygen as well in this little glass box. I just couldn't understand why I still couldn't hold my baby, and why he was hooked up to everything.
As days past, he got a little better, and the nurses and doctors were concerned on things that he was not doing that a newborn should be doing. He was not sucking his food through the bottle, he refused to take a pacifier, he was losing weight and I was scared. The last big thing they found out was that he did not pass the newborn hearing test that they do, and blood samples and results were sent out to another hospital. As we waited for results, the days turned into weeks, and I just didn't know what to do. We made this perfect, innocent little baby, brought him into this world, and what if something terrible is wrong with him? Something that doctors can't fix with medicine, surgery, nothing. The results had come back in, and not to our knowledge because I was asked if I wanted this test done and I said I did not, our son had been diagnosed with Down Syndrome. I had no idea that this could ever happen to us, just a complete and utter shock. I had a lot of things that went through my head, like every parent that has a special needs child does. Why did WE have this baby? What is going to happen to him? How mental or physical is he now, or going to be? What will this change and what will we have to learn? A few days go by and I am like, we can do this, this will be hard, this will be tough, we will learn and grow with him, we are his parents for life.
We didn't want to treat him any different than any other children, we were the first to have a baby in my husband's family, and the only one to have a special needs child at that. As years went by, yes sometimes I did get discouraged and still sometimes do, watching kids that are his age, even with special needs, progress, and fast at that. As determined parents, we refuse to let him think that he can't do anything and everything he wants, just might be at a later age. We had him growing up with all the therapists that we could get to come into our home, by the time he was three years old he had graduated and immediately had to start school to continue more therapists. He was on a g-tube, an ng tube,(both are feeding tubes to help him eat, he couldn't eat solid foods or drink well without aspirating) went through surgeries, and blood work we were in and out of the hospital up until he was 3-years-old, and I just didn't know how much more pain I could see him go through. Three years old was his first milestone, he wasn't in the hospital nearly as much, he was just getting ready to get his g-tube out, and I saw so much progress when he started school. That's when I knew that I wanted to have another baby. We were told by doctors that everything should turn out fine by this time, and I got pregnant in May of 2010 not long after we had been trying. This pregnancy was normal, I barely gained any weight at all, was excited and hoping for a girl. February of 2011 we gave birth to a little girl and name her Lillith. Again, we never had any testing done to see if the child would be born with anything, because we just didn't care, it doesn't change that fact that it is your child, and you made them, and they will be loved.
Weeks turned into months, and she was doing okay, but not gaining a lot of weight. We had changed formulas, and added cereal, everything and anything we could think of to get her to gain weight, nothing was working. We again, got scared not knowing what was going on. She was always, always hungry, and I just didn't understand if she was eating so much why isn't she gaining weight. Into the hospital we go again, and was finally sent to Riley, who are our godsends. We were there for a few months, trying to figure out what she had. She was very small in weight, very tiny in height, and all I could think of was maybe she was going to be a dwarf. They ran tests to figure out that she was, what very few children have, a disorder called 1q21.1 micro deletion. This means that she has a partial deletion of her first chromosome, and my son has an extra one. We were back to square one again, the doctors even stated that they will be learning about this disorder with us because it is so rare to have, and also so rare to have two special needs children from the same parents. She has a smaller stature than most children at her age, she could develop schizophrenia between 18 years and 21 years, she would learn differently, have both mental and physical delays. We sat there in awe, just looking at each other, thinking we really have two special needs children on our hands, what are we going to do now? As I had previously stated, I have always wanted children, and I would have liked a minimum of three. As I questioned if the Riley doctors think that that would be a good idea, the response that I received was heartbreaking, that they suggested that we shouldn't have anymore children until either we get tested to see who's DNA it comes from, or if we do have another, that they can not guarantee that this child wouldn't either be special needs, be very severe delayed, or possibly pass away. That was that, no more thinking about three children, it was done, in one sentence, it was done, no more children.
Do I regret what I've done? Do I regret being a "type" of person that was marked the girl that was 18 and pregnant? Do I regret starting a family early and young? Do I regret getting made fun of? Do I regret having not one but two special needs children? Never in a million years. Is it hard, yes. Are two children that are special needs more trouble than one child that is considered normal? I do not compare, because life is hard, growing up is hard, having children is hard, my job isn't any harder or easier than my next door neighbors. Everyone was put here for a reason, and our reason was to give these children the life that everyone else has a chance to have, and that to me, is a job well done. I am the girl that was 18 and pregnant, and I would never change that for the world.
