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.

In the newspaper

My mom has been working super hard on my bucket list. I'm going to get to do some pretty cool things. I get to be in the paper on Thursday. It's my birthday so it's extra special to have my picture in the paper. I can't wait to see it.

A keeper

Valentine’s Day is getting close and I have not one but two people I love to share the day with. Of course Skylar will always be my Valentine but I’m glad that God sent me another. He put him in my life at the most perfect time. He truly is a keeper. I’m going to brag on him a little bit. He loves me and Skylar. This is the first time I’ve had a guy that cared about me and for Skylar and wanted to be part of both of our lives. He’s a busy guy but makes time for me and the things that are important to me. He never gets annoyed by me asking a million questions and I ask a lot of questions especially when it comes to watching a movie or TV show. I know that and he doesn’t mind it. He will ask me about my day AND will actually listen when I tell him about it. He gets my jokes and my sarcasm. He makes me laugh and I love being around him. We have fun together. He does  the little things. He will get Skylar’s wheelchair at night for me and help with her feedings. He offers to keep her while I go out of town for work. This is a BIG deal!!! I’m sure this doesn’t seem like a big deal but it’s HUGE to me and very special. I’ve never really had it. I’m used to doing everything for Skylar by myself and when he helps out without being asked and does it because he cares I know that he’s a keeper. His family is wonderful as well. They are so nice and a joy to be around. They have accepted us into their family. It has always been a fear of mine that I would never find someone that would love Skylar and me and never accept us and everything that we have to deal with and it doesn’t faze him or his family. I think we have a great future together and I’m excited to see what God has planned for us.

A dream is a wish your heart makes...

I am getting really excited about Skylar’s list. I am happy that she will get to experience these things and I will get to be there every step of the way. Some of these things she would never get to experience but I want her to experience everything she can. There are little things that you never think about your child missing out on or you missing out on your child getting to experience those things. For example, Skylar would never be invited over to a slumber party with friends. She is loved by many kids but lets face it it’s harder on the parent to have to give Skylar medications, start her feeding pump, and do everything that she requires at night. However, if it can be done it will be done.

Some of these things will take place over the next few months and I am ecstatic. She will throwing out the first pitch at the Travelers game on April 21^st. It’s a tentative date but they do not foresee any reasons it would need to be changed. With that being said, we’d love anyone and everyone to come out.

She will also be throwing a party and inviting all of her family and friends. We will celebrate Skylar on February 15^th. God will have given me 8 amazing years with her and we have a lot to celebrate.

She might also be joining a sorority soon as well. Skylar might officially be a member of Chi Omega. They are a wonderful group of girls that I met while I was volunteering with Make-A-Wish. They raise money to grant wishes and they were doing a wish reveal for a little girl. A few of the girls had brothers and sisters that had wishes granted and so this meant a lot to them. If Skylar could ever join a sorority I would want her to be part of a group of girls that get joy out of helping others and who make Make-A-Wish their national philanthropy.

I was watching Cinderella with Skylar and this has to be a favorite song of mine. I like to think that Skylar dreams of things and I am here to see that those dreams come true.  

A dream is a wish your heart makes
When you're fast asleep
In dreams you lose your heartaches
Whatever you wish for, you keep

Have faith in your dreams and someday
Your rainbow will come smiling thru
No matter how your heart is grieving
If you keep on believing
the dream that you wish will come true