The day after I had Hayden I was sitting in my room while the genetics counselor lady went to meet him about an hour or so after she went to see him she came in and she had a very sad look on her face. She told us some very unpleasant news that she knew what he had Hayden had Zellweger syndrome. She told us children with this genetics usually don’t make it to their first birthday their life sentence is usually no longer than 6 months and only one in 50,000 children get it. She gave us a pamphlet to look over and told us that she knew what it was immediately after looking at him you could see it in his face and his I guess bat wings that we called it. We learned that children with this have liver failure trouble if I can remember right sucking so he would have trouble breastfeeding. He would have to have oxygen and either a g tube or a NG Tube. She gave us lots of other information but I was so scared and out of it that I couldn’t even think straight the fact that my baby who’s just a day old had a life sentence that there was a chance that he might not even make it out of the NICU that this would be his life stuck in the hospital.

Dick had heard all this but still told his family everything was fine that the doctors were morons and they didn’t know what they were talking about because nothing was wrong with him. So as I was trying to comprehend the news we had heard he was planning on going back home and playing with his friends and telling his family everything was okay. I don’t remember when it actually was that I told his family what was going on and they were all in shock because they had been told everything was fine by dick head. I’m just going to summarize some of the things just cuz there was a lot and too hard to remember every date and detail but we had some amazing nurses honestly some of them at first when I met them I didn’t think that they were good enough for Hayden some look too young to know what they were doing but as I got to know them I learned to really love them I know that they were just doing what was best for him. I remember the chaplain coming in and trying to get me to talk to him and talking to me and my mom I remember meeting all these genetics people so many different specialty doctors that would be working on Hayden and looking at Hayden and trying to make him as comfortable as they could make him.

I wasn’t dealing with what was happening I was overworking myself going back and forth from my room forcing myself instead of letting myself get better I was determined to go see him and every day the NICU was I guess impressed by how I was moving but in reality I was struggling to the point that I gave myself an ulcer and didn’t realize that I just knew I was in pain until finally my mom and my sister had me go down to the ER and they figured out it was a ulcer from the stress and not taking care of myself so I got on some medication and got some rest. Remember my family coming to meet Hayden but my brother was at work and he was a truck driver so he was out of the state and how upset and sad I was that I had all my other siblings but he wasn’t there and he had had a baby in the NICU so he knew what it was like but the next day he showed up and I had no idea that he was actually going to come I remember hugging him so tight and he gave me the biggest hug which him and I had been on a rocky relationship but he was the one person that I really wanted which is kind of stupid in a way to think because I had this huge family that were there for me and dick heads family were coming but they were just there for show cuz dick head was showing this perfect happy Dad who really ignored the fact that his son was dying.

Everyday there it seemed like there was a new issue, there were days my mom and I didn’t know where we were going to sleep. Even though we didn’t really sleep because at least one of us wanted to be there for Hayden at his care times which was every day and night at 2,5,8 and 11. I remember when we got kicked out of the waiting room from sleeping in there so mom and I looked for a different empty room in the hospital and Mom found someone in the hospital who let us sleep in a huge empty room that was just used for meetings. So we scooted two little couches together to make us a bed and the nice lady brought me a baggie full of stuff to help me, like pads, nursing pads, ointment, pretty much anything you could use after having a baby. And I was so happy because I was running low on it. But mom and I tried to go to sleep all I had was the baby blanket I brought for Hayden and Mom had her blanket. I was gonna use his blanket but mom took it and gave me hers. That moment laying by mom I was trying to fall asleep but I just kept looking at her sleeping and I knew in that moment she was my hero, I’ve always known that but seeing how tired she was and she wasn’t going to leave my side through this I knew I’d be ok because I had her with me. Through this rough road ahead.