I knew my second pregnancy would be difficult. I went into preterm labor with my first son and sure enough, I also went into preterm labor with my second. I was put on strict bed rest at 25 weeks. I spent a lot of time on the internet researching problems associated with preterm babies born at 25 weeks, which included mental retardation, blindness, deafness, and cerebral palsy, to name a few. I wanted to be ready in case I had a preemie, but I prayed that I would get through this period and have a full term, healthy boy. As the weeks went by, my worries subsided, but little did I know that I would be revisiting those fears once again. At 35 weeks, I came off bed rest and went into labor about 6 hours later. My oldest son was born at 34 weeks, weighed 6 pounds and was quite healthy. I was sure this boy would surely be even bigger and stronger since he had an extra week.
Cameron was born at 3:00am, November 21, 2004, less than an hour after my arrival to the hospital. Needless to say, it was a whirlwind delivery. But when I first saw Cameron, I knew I something was wrong. He was so small, (only 4 lbs), he had blotches all over his body, and though his eyes were wide open, he did not make a sound. When my OB delivered my placenta, she asked that it be sent to the lab, but I thought nothing of that at the time.
They took Cameron to the NICU and I was so exhausted, I fell asleep. The NICU doctors kept us updated every hour, but I felt like all the bad news was just a dream, as I was in and out of sleep during the whole time. But Cameron was sick, very sick. He had blood problems (both platelets and red blood cells), breathing problems and an enlarged liver and spleen. But I was so tired. I could not process any of it. Finally, at about 6am, they told us that we needed to come see Cameron ...in case he didn't make it through the morning. This finally woke me up.
When I saw Cameron for the first time in the NICU, it hit me. He could barely breathe. He was crying a lot, but in very short spurts, because he could not get much air. His hands were clenched in fists and his knees were pulled up to his stomach because he was in so much misery. The doctors were in the process of placing a central line in his belly button, he had an IV coming out of his head and I just started to cry. I looked at him, touched him and wanted to leave. I didn't want to get too attached to him. I couldn't imagine him living like this and I did not think he would make it. I went back to my room and cried myself to sleep. My husband went home and started making the phone calls to the family.
When I woke again at 9am, I asked the nurse how Cameron was doing. She said critical but stable. I went back to the NICU. Cameron had a lot more tubes in his little body and he was intubated, breathing with a machine, but he looked so comfortable and peaceful. At this point I knew, he was going to be okay, he is going to live. Though others told us his chances were 50/50, I knew he was going to make it. I called my husband with the good news
The doctors knew Cameron's problem was viral, but they couldn't pinpoint the virus. Finally, after about 2 days, my placenta lab test came back and it was infected with CMV. I was so relieved that Cameron was going to survive, but I was not ready for the next bombshell. The NICU doctor told us that as a result of his brain damage, Cameron would not be able to “walk, talk or learn”. This is when I fell apart completely. I could not imagine having a severely handicapped child. It just could not happen to me, I was not that kind of mom, God screwed up!! I went to the corner of the NICU and just cried in despair. I had never felt so helpless. I felt like my dreams and my life were shattered. At one point during that day, I thought "I can't do this, I could just leave the hospital and never come back for him. Someone would adopt him, someone other than me could take better care of him!" Then I started thinking… "but what if they don't take good care of him, what if they are mean to him, what if they neglect him, what if they don't love him...wait... GIVE ME BACK MY BABY!" From that point forward, he was all mine!
Cameron remained in the hospital for five weeks. He received multiple blood and platelet transfusions and was on the breathing machine for about six days. While there, we tried to talk the doctors into administering gancyclovir to Cameron. They said it was too dangerous and that it would kill him. Cameron came home with us just in time for Christmas. He remained on oxygen at home for another two weeks until he went back to the PICU for his last blood transfusion which seemed to do the trick and he could breathe on his own. Eventually, at around seven months old, we flew with Cameron to Pittsburg Children’s Hospital to see Dr. Ellen Wald, a pediatric infectious disease specialist. She ultimately put Cameron on a two year gancyclovir treatment, one year through a central line and one year on oral valgancyclovir. He did great on both and we think it did wonders for him and truly improved his outcome.
I cannot help but feel blessed for having my sweet Cameron in my life. I was NOT a special mom that was given a special child, but he has changed me. Having Cameron in my life has made me a more patient and loving person. It has made me a better mother to my older boy. It has taught me not to be afraid of others with disabilities and to embrace them as wonderful human beings. I used to be the one who looked the other way when I saw disabled kids or adults. Now I make eye contact, smile and make conversation with them and their family. To some extent, it has been liberating. People tell us we are doing a wonderful job with Cameron. We try our best, but when we have friends and family validate it, it gives me more hope and confidence. However, deep down, we always wish we could do more.
Cameron has grown into a loving, sweet boy who is as cute as a button. He goes to a typical elementary school but he is in a self-contained classroom with other children with similar abilities. He started walking at around 7 years of age, but only short distance. This is still a struggle and he has a poor gait, but we believe this development alone has helped with his cognitive thinking. His walking has opened so many new experiences for him. He is still non-verbal and we worry that he will not be able to communicate with us. He tells us what he wants by either walking to do it or grabbing for it, so he can tell us his basic wants. Cameron is a good eater (he self feeds himself now) and a good sleeper and he luckily has no seizure activity. He is always doing new things, albeit slowly, and we are continually encouraged. His favorite activity is swimming. He is a better in the water than on land and he has so much freedom in the pool. He even swims with us on vacation in the ocean and we are very proud of him. Cameron loves his cartoons on his iPad, especially Dr. Seuss and he loves playing with his older brother.
When I look into the future, I get really scared. But then I reassure myself that I will be able to handle anything then, that I will learn as I go, just as I have done to this point. I will be able to handle it because it is my Cameron. A parent once told me that raising her special needs child was not nearly as hard as she had imagined when he was born and in hindsight, I agree with her 100%. It has been a rewarding experience that I would never trade in. Cameron is our “new normal” and a wonderful “normal” it is. I love my perfect "imperfect" family.
I think back to a day when Cameron had a school project. One of the questions it asked Cameron was "what do you want to be when you grow up?" I cried when I thought about this question. I couldn't ask Cameron because he doesn't talk. I felt so helpless. I didn't know what his dreams were, and this will always sadden me. However, an answer did come to me. So where it asked "What do you want to be when you grow up?" I wrote one word..."Happy"!
- Shared by his mother, Julie
Posted: 11/11/2015 12:17:01 PM