The Journey

These past 8 years have been quite a journey. It started in my OB’s office. My mom was with me and the doctor came in and examined me and asked me if the tech had mentioned the fluid that she saw on the ultrasound. I had no idea what he was talking about. He proceeds to tell me about the fluid and words like Hydrocephalus were thrown around and he was going to send me to a high risk OB to get a 3D ultrasound. Like I always do, I took it all in and waited until I got into the parking lot to be upset. I have a habit of putting on a very good poker face in front of people and then as soon as they leave I let out every emotion that I have. I remember going home and googling Hydrocephalus and the more I read the worse I felt. 

Dr. Google is your worse enemy sometimes. I've had my moments of panic because I thought I Dr. Google had diagnosed Skylar with something life threatening. However, it's a good resource to educate yourself.

I met with the high risk OB and I’ve seen a lot of doctors over the years and I have to admit that he was worst. I saw Skylar on the 3D ultrasound and I was so excited but it didn’t last long. He came in and looked at the ultrasound and said to me, I will never forget this, “See all this fluid? Basically your child is going to be a retard and will never walk or talk.” I was dumbfounded that he was so straightforward about it without any empathy. I remember asking him if there was any chance that she could be normal. I had spoken to a Neurosurgeon and we had discussed surgery, shunts, and how once they get the fluid off its hopeful that she might be normal. According to the high risk OB, the only way that my child would be normal is if I believed in miracles but in my case I shouldn’t. He left and I spent what felt like an eternity in the room crying with my mom. Skylar was born very healthy. She had an MRI when she was 2 days old and I remember it was Dr. Stanford, her pediatrician that called me to let me know that Skylar had what is called Schizencephaly. It is very rare and apparently she has the worst case that any of them have ever seen.  I was a new mom and I was bombarded with nothing but negativity. I was angry. I couldn’t understand why God picked me to have a child with such severe special needs and I didn’t help when people would say that he only chooses the people that can handle it. I would get upset every time I saw a child that was younger than her that was walking or talking. I just wanted so bad for her to develop like a normal child. I would get upset every time someone would mention a wheelchair. I didn’t think I would be a mom whose child needed a wheelchair. I spent a long time asking why me. When Skylar was 8 months old she ended up in a coma like state for a few days. She wasn’t getting better and she had a few spinal taps and the last one she had they told me that they saw a lot of red blood cells and they wanted to do a CT scan. The CT scan was done and the doctor then said that they see something on the scan that wasn’t there before and they wanted to do an MRI. I asked him a million questions on what it could be. The next day was one of the worst days of my life. Skylar had her MRI and we were back in her hospital room and I remember every moment about this day. The doctor walked in with a social worker. I knew something was wrong because this resident had been working with us for a few weeks now and he walked in with tears in his eyes. He told me that she had a brain bleed and intracranial pressure that was putting pressure on her brain stem. He told us that she wasn’t going to make it. I remember calling my mom because she was in the hospital and unable to be there. I called her and I had to tell her that they said Skylar wasn’t going to make it. I was numb and I didn’t know what to do. They took us to the PICU and took the family to a conference room. They showed us her MRI and showed us where the fluid was and where the pressure in her brain was. I remember the next few days I would watch the monitor and freak out every time that it beeped. I kept watching to see if her heart rate would drop or her pulse ox. Thankfully, the pressure subsided and she was okay. I think it was that moment that I realized that I had spent way too much time focusing on what I wanted to have in a child and what I didn’t get. I didn’t care if she didn’t walk or talk anymore. I just wanted her with me not matter what that meant. These past 8 years have been the hardest of my life. I’ve spent my entire adult life being Skylar’s mom and hardly anything else but they have also been the most rewarding. Being Skylar’s mom has brought so many people into my life that I am so thankful for and without her I’m not sure I would have ever met them. She’s given me the opportunity to be part of an elite group that I never knew existed before her. I’ve met parents that have many of the same struggles and have had struggles beyond what I could ever imagine. My path in life will never been the same and I am thankful that Skylar and I have been able to have such a great journey and meet so many wonderful people. It’s amazing what God has planned for your life that you’re not even aware of. However, I wish I had a crystal ball so I could sneak a look into my future just so I know that things will eventually be okay.