My husband Todd, of 13 years at the time said he would stay with the other two children so that I could go to the hospital to see him. We knew he wouldn’t get to come home for a couple of days because he was in the NICU so that they could monitor his temperature since he was so small he was having a hard time regulating his own temperature. So as Todd got home I got the camera, camcorder and off my best friend Verona and I went to see our newest addition to our family.
When we got to the NICU things were so different from any other nurseries I have ever been in. When my best friend’s son was born and I saw him in the nursery he was a fat full term baby in a nursery that had babies sleeping. Nothing could have prepared me for the first time I stepped into the NICU. There were so many islets with such small babies in them. Before they would even allow me in to see him I had to washed my hands and get a clearance from the nurse. There were about 20 islets there and they were so scary looking. I remember thinking “I hope he looks normal”. I know that was terrible thing to think but I didn’t know what else to think. The nurse guided us over to a small little baby who had the most perfect features and a perfect little head. He was only hooked up to the monitor that kept up with his body temperature. They said he was doing very well and I could hold him if I wanted. I was so excited. At first I couldn’t do anything but look at him. I couldn’t believe how small he was. He looked like he would break if I help him. It was like holding a baby doll. We got the camcorder out and Verona started videoing me with our new little guy. I got to feed him, rock him and even changed his diaper. I was just so amazed; we even had to cut the wipes in half because his bottom was so little. The preemie diapers were even big on him, the t–shirt they had on him was too big as was the tiny little blue and white hat that a church group had crochet for the babies. I kept asking the nurses how much did he have to weigh before I could take him home, how could I get him to eat better and when could Joshua and Kaitlyn come see him. I wasn’t thinking, they don’t allow children in the NICU but I just couldn’t wait for them to see him.
He was so perfect. I visited with him for several hours before leaving the hospital. I couldn’t wait to tell Todd about him. But the good news didn't last long.
I now have a child who has emotional disabilities and I know how hard and frustrating it can be when you are trying to find professionals who can do more than just give out medication. I was trying to get someone who could teach me ways to work with my son and not just push us off and make me feel like I’m the one with the problems. I tried everything the “experts” told me to do, we did therapies, medications and nothing made a difference. At 8 years old he was on 7 different medications at the same time. I tried all the therapies, medications, and I was very frustrated when after I did all I could do I finally came to the realization that it didn’t matter what the diagnosis he received there still wasn’t anyway to know what the correct treatments were.
I was so focused on getting a correct diagnosis that once I got one I didn’t know what to do next. I was so insistent that he get a correct diagnosis, and I’m not saying its not important to get a correct diagnosis because it is very important, but I spent so long going from Dr. to Dr. from all over the country until I found someone who knew what was wrong with my son. The sad thing is that I told them this when he was three, 4 years ago and no one would listen to me. Now that I had a diagnosis, what do I do with the information?
Everyone had the treatment that would work, they all could help us if we would just follow the directions they gave us. This all left me feeling very frustrated, scared, sad, depressed and I felt guilty for failing my son. Why couldn’t I just quit being so lazy and just follow what they told me to do? Did I really want him to get better? Did I really need him to really need me to function. I thought somehow it was my fault. I’m sure it must have been my fault. No I didn’t do the drinking and cause him to have brain damage but it’s a mom’s job to ensure that her children turn out to be well adjusted adults one day isn’t it? My plan in this writing is hopefully to help other parents somehow understand they are not the only one’s who go threw what they are dealing with and feel like they are drowning.
