Unexpected Triumphs

It took me a long time to realize that I wanted a future beyond Skylar and me. I never wanted more children and the idea of being married was nice but I never dreamed that it was a possibility. I have an extremely hard circumstance and I wasn’t sure I’d ever find a guy that would accept me and Skylar. I will be the first to admit that it’s a lot and it’s difficult and hard to be part of. Skylar and I have been a two person family for 8 years and I didn’t think that it would ever be more than that. We are busy and these days you have no idea what kind of day she might have. One day she is perfectly fine and the next she’s being taken to the hospital by ambulance. It’s a roller coaster ride but it’s what I have been use to since she was born. It’s nothing new for me but I can’t imagine what it’s like for someone on the outside looking in.

Skylar’s birth defect is very rare and I’ve done research and I still get no answers. I have been so worried about having more children. When I was pregnant with Skylar I had an easy pregnancy but it was miserable. I never got to enjoy being pregnant because as soon I got good news it was followed by terrible news. I don’t forget much when it comes to Skylar and I can still remember almost every detail about her life. The worst days stick out more than others. I can remember everything about the day I had my 3D ultrasound, when they said that she wasn’t going to make it, and all the other critical moments that she has had. I remember sitting in the doctor’s office with my mom and we were there for Skylar’s 3D ultrasound. I saw her face and her little features. The moment of joy was soon taken over by one of the saddest days of my life. The doctor came in and was very short. He has no idea that it only took him 2 minutes to destroy me. He had told me that she has an abundance of fluid and that she will be a retard that will never walk or talk and when I asked if there was any hope that she would be normal he told me that if I believed in miracles but in my case I shouldn’t. I was devastated and I’m not even sure he realized the magnitude of what he just said to me or how he said it. It was a long time before someone actually gave me some good news about Skylar. Even her delivery wasn’t what I hoped it would be. I knew that Skylar would be taken to the NICU after her delivery due to her condition. We weren’t sure what to expect but she was born healthy. However, I didn’t get to enjoy my new baby once she was born. She was immediately taken to the NICU after I saw her for a few seconds when they held her over the curtain. When Skylar was only a few days old they took her for her MRI to see the extent of the fluid and I got a call from my old PCP, Skylar’s new PCP, and he began to explain to me that Skylar has what was called Schizencephaly. I’m not new to medical terminology but I had never heard of it. He began to explain what it was and the severity of her condition. So I am new single mom, I haven’t even laid my hands on my newborn baby, and I had a multitude of doctors that kept flooding my room to tell me how severe my daughter’s condition was and a list of things to expect her never to do. I knew that we would have challenges but I never expected for them to shatter my dreams in one day. I heard from everyone that she would not walk and she wouldn’t talk. I had heard just about all I could. I had my parents wheel me down to the NICU so I could finally see her. My heart was breaking and all I could think of is that I needed to see her. When I saw her, she looked beautiful. I kept thinking how is it that this baby has something wrong? She looks so normal. I thought that maybe they got it wrong. Maybe God was going to trick them all and she was going to be fine. Skylar was having some issues with her feedings. She would turn blue when she began to drink her bottle so they had her on apnea monitor. They would let me feed her and then she’d stop breathing each time I tried. I felt like a failure. I thought that I wouldn’t get it right that I was going to be a terrible mom for her. However, she did like she always does and she showed them that she was a fighter. The first time they mentioned G-tube she wanted to show them that she was capable of doing it herself and she did. I wish I could say that 8 years later they were wrong. However, Skylar has her own surprises and her own triumphs. They might have gotten the fact that she doesn’t walk or talk right but they missed out on seeing how great she is. They missed out on seeing the happiest little girl who has the most amazing laugh. My dreams as a parent changed that day. I wasn’t the mom who was going to coach T-ball or her basketball team. However, she still played softball, danced in a dance class, and cheered. It wasn’t the vision that I had once thought but it had turned out to be much better. I have dreams of having another child and seeing them hopefully walk and talk. I look forward to being a parent that gets to see their child achieve typical milestones. I look forward to that day but one thing is for sure that having a child with special needs changed my life and changed me as a parent. It changed my dreams as a parent and changed my ideals of what I wanted my child to be like. Having a child with special needs gives you so much more than you ever dreamed of having. There are a lot of bad days and a lot of heartache but it is overshadowed by the small victories and the unexpected triumphs. One thing is for certain that I am grateful for Skylar and for helping me be the parent that I am and showing me the kind of parent that I want to be if I am ever lucky enough to have more children.