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. 

It Takes a Little Piece of My Heart...

Last Friday was one of the scariest days thus far since Skylar has been on hospice. I’m not in denial but I keep hoping that maybe they are wrong. Maybe she doesn’t really need this, but then we have weeks like we did last week and reality slaps me in the face. It seems to be harder each time and sting longer afterwards. I’m use to Skylar having seizures. They suck and they are terrible and I wish I could take it all away but it’s nothing new to see her have them. However, it’s completely new to see her have 20 in an hour and not stop and her pulse ox drops every time she has a seizure. She couldn't hardly get air before she would have another one. It breaks my heart to see her in pain and to struggle.

The most frightening thing in the world is to get a call that your child is being rushed to the ER by ambulance. Skylar’s heart rate was in the 30s and 40s and her temperature got to 90 degrees and she was unresponsive. I arrived at the ER before the ambulance and all I kept praying was that if this is it please don’t let it happen in the ambulance when she’s by herself. I’m not sure how I would have forgiven myself if I knew that she passed and she did it alone. I was sitting in the waiting room waiting for the ambulance and a social worker comes out to get me to take me to a conference room. I panicked. I knew something had happened on the way but she was giving me a more private place to talk to the doctors before Skylar got there. She arrived soon after and it’s intimidating when you have 10-15 people around your child and they are talking about defibrillator pads , her color being off, and to turn the oxygen up because she’s not breathing well. I stood in the back of the room while they poked her and gave her oxygen. They put warming blankets on her and a warming machine and started warm IV fluids. It was like I was trapped in an episode of Grey’s Anatomy except this was real life and this was my life and my child laying there. I just wanted to hold her hand and let her know that it was okay but they were so busy working on her that I just stood there praying that this not be it. My parents came to the ER, Clint came, other family, Hospice, and Palliative Care. It was nice to see the support and to have comfort. Thankfully Skylar’s color started to come back, her breathing started to improve and after a while she eventually warmed up. After a few hours, we were able to go home.

After this past week, she wasn’t quite the same. She is typically a very happy girl but she didn’t smile or laugh like she usually does. It took a few days to get her to smile and act like she was feeling okay. I, on the other hand, am still not there yet. Last week took a lot out of me and I can only imagine what it will be like in the future. The harder she has to fight the longer it takes me to recover from it. To say that I am not ready to lose her is a total understatement. I am terrified of losing her and more terrified that she will have more days like she did last week and they will be more often and I will have to watch her suffer through it all. I wish that I could take it all away and I wish that we weren’t going through it at all. My heart breaks a little each time and I’m worry about what will be left when the time does come because she takes a little piece of it on each bad day.

Happily Ever After

I have always been content with how I pictured my future. I've never pictured a family beyond what I've always had. I've always envisioned it being Skylar and me and our happy two person family. I've loved the idea of getting married and extending our family beyond us but I've never seen it to be a reality. I've never been naïve about Skylar's condition but she had beaten so many odds that I always assumed that I would be wondering how I was going to lift her when she got to be a older and as big as me. I would talk about how it's going to be great when we are the same size and we can share clothes. I had envisioned a life so much different than the reality that I am living. The thought of losing the future that I had planned and being left with just me in our two person family has been the hardest struggle and the hardest thing to comprehend. It has made me think about the possibilities of actually extending our family. I never wanted children after I had Skylar. I love Skylar more than life itself but I had a fear that if I got pregnant again that I might be the one that caused Skylar to have such a severe disability and I might continue to pass it along to other children that I have. It wasn't the idea of having another child with special needs that scares me it's the idea of putting another child through everything that Skylar has gone through. It didn't seem fair. As Skylar got sicker, I started to feel like my time as being a mom, I didn't want it to end. I would always be Skylar's mom but it just made me want to have a child and experience having them walk and talk and I wanted to experience everything that a typical mom does. I have had genetic testing on Skylar and nothing ever came back. They told me that I had less than a 5% chance of having a child with such a severe disability. It gave me hope for a future. I am still unsure of what the future holds for me. Who knows if I will marry my Prince Charming and have more children. I wish I could take a glimpse into the future to see what God might have in store for me. I just envision a different future than I have before. I look forward to maybe getting married to a man that loves me and who can't wait to spend his life with me. I look forward to us having children and to Skylar being a big sister. I want her sibling to know Skylar and to get the opportunity to meet her and see how great she is. Not matter what, if Skylar has a sibling they will always know how great their big sister is and celebrate her even if they don't get a chance to meet her. I see friends that have married wonderful men and they are all so happy. The love that they share is an inspiration and something that gives me hope. I'm not sure how the future will turn out and I might not ever get married or have more children but only time will tell. I keep holding on to the vision that I had of my family of two and keep praying that it will be my happy ever after!

These are the times of my life...

So my mom has kept me pretty busy lately doing some really fun things. I have been able to scratch some things off of my list. I celebrated my 8th birthday with my friends and family. I wasn't feeling to well the day of the party but I ended up having the best time. My mom threw a cool superhero themed birthday party. It was really great to see so many people come out and celebrate my birthday. Before my birthday, my family and I went bowling on my actual birthday. We weren't sure that we'd be able to do it since most of the lanes were being used. We ended up getting some lanes and we had the best time. I even beat everyone. It was a really fun night and I'm so glad that they came on my birthday.

The coolest thing of all was the sleepover with my friends. We did a lot of fun things. We got our fingernails painted, sang Karaoke, danced, played games, and watched a movie. I couldn't believe it but I was the last person to fall asleep and I even stayed up past 1:00 am. It was one of the best nights of my life and I was so happy for the people that came that celebrated that night with me. It was my very first sleepover and it was a day that I will never forget.

Happy Birthday Skylar!!

Today has always been a day that warms my heart. I love this day. Today is Skylar’s birthday. Today we get to celebrate her turning 8 and I couldn’t be more excited. I have always felt that Skylar’s birthday wasn’t just a birthday. It was HER day. I love to plan parties and I have tried to give Skylar the best birthdays. I’m sure some see it as over the top but I’ve always felt that she deserves to have the best birthday that I can give her. This birthday has seemed sentimental to me. It’s uncertain if Skylar will be here to celebrate her 9^th birthday with us. I am praying very hard that she will be here to celebrate for many more years but I wanted to make sure that this year was a birthday that I made sure that we didn’t just celebrate that she was turning another year older but celebrate her life and how special she is. I say it a lot but I appreciate my time with her and every year that we celebrate her birthday will be an even bigger celebration and an even bigger reason to celebrate her life with us. It’s incredible how a little 8 year old girl who doesn’t talk can steal the hearts of so many people. She has such a huge personality and a smile and laugh that will melt your heart. This birthday I want to celebrate the person that she is. She’s brave and so strong. She has been poked and prodded and no matter what happens she never complains. She’s the girl that wakes up from brain surgeries and laughs for days without taking a breath. She can surprise you, scare you, and turn any bad day into a good day. She’s the most verbal nonverbal child who has no problem getting her point across to anyone. She loves her friends and her family and you can tell by how quick she smiles when she hears them. She loves to ride in a car with the windows down so the air will blow in her face. She thinks getting her teeth brushed is hilarious and laughs every time. She is truly a gift and the best part of me. Happy Birthday to the most loved, sweetest, unique, most special 8 year old child I’ve never met. I love you, Skylar!

Tell me this laugh doesn’t melt your heart! This was a few days after one of Skylar's shunt surgeries. Something about them hits her giggle box.

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.