My Heart Belongs in "Holland

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the planes lands.  The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change of flight plan. They’ve landed in Holland and there you must stay.

The important thing is they haven’t taken you to a horrible, disgusting, filthy place, fully of pestilence and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while you catch your breath, you look around…and you begin to notice that Holland has windmills…and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s when I planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you many never be free to enjoy the very special, the very lovely things..about Holland.

I read this often and I’m not sure who wrote but I love it. It’s very true that it’s devastating that the life that you had planned for your child will never be the life that they live and that you live with them. However, I have lived a more fulfilled live having Skylar in my life. I also don’t think that any book can prepare you for raising a child with special needs even if they had one. Nothing prepares you for the pain and suffering that they go through, the hospital stays, operations, ER visits, doctor visits, etc. You’re never prepared for every negative blow that comes or bad news that you’re given. Instead of learning of when they eat solids and can have different foods and when they walk you’re learning how to calculate the amount of calories that they need for their weight and how to work their feeding machine. You learn the different types of g-tubes and seizures and you research the 100 of different things to help them with their seizures. You learn what every cry means because they cannot verbally tell you what is wrong or what they want. You learn what a shunt malfunction looks like and can tell the neurosurgeon before they even do a CT scan. You learn how to crush up medications, administer medications, what a slip tip is in a syringe, and many other things about them. You learn more about IEP meetings that you ever wanted to learn and know the ins and outs of how to get things for your child when nobody else agrees that it’s needed. You also learn to slow down and not take things for granted, appreciate everything, and celebrate even the smallest things.

You also learn about the community that you’ve become a part of. Every parent has their own struggles and their own frustrations but you all have a common bond and can sympathize and vent to each other. Nobody will understand what you go through more than a parent that also has a special needs child and to have that community of people to go to in a time of need is essential. They understand and share your same concerns, fears, and frustrations.

I wasn’t meant to have the life that I once had planned for myself. God had planned something better for me and he’s still planning. I have huge dreams and things that I want to accomplish and do with the things that I’ve learned these past 8 years. The next time that I have children the outcome might not turn out the same. I might have a typical child that develops normally and lives a healthy long time. I hope that I get to experience that but my life with never be the same since having Skylar. I dream of the day that my future children know the kind of person that their big sister is/was. I pray that they get to meet her and get to see how great she is and get to experience the extraordinary life that she’s lived. I want them to witness the many blessings that have been received throughout her life and I want them to see that all things are possible. However, if she is not here when her little brother or sisters arrive they will still know how amazing she was and they will be taught that children like her aren’t to be stared at or picked on they are children that should be admired for their strength and drive and encouraged to keep trying. They will be advocates for their sister and they will voice that she was unable to have.

Going to “Holland” was/is the best experiences of my life and in the future I hope I get a chance to see what “Italy” is all about but I believe that my heart will always be in “Holland”.

Marking them off and having a blast!!

So I have kept my mom pretty busy lately and we've been having the best time. First my mom took me to get a mani/pedi. My memaw and my Aunt Andrea and cousins got me one for my birthday and they all showed up with my grandma and Clint to be there while I got it done. I got a few mani/pedis for my birthday so I'm excited about doing it again. I liked my feet rubbed and my nails painted really pretty. My mom picked out a really pretty color for me too. The next week I kept my mommy busy the entire week. We got to go eat at the Governor's Mansion. It was really neat because this Senator named Pierce mentioned me at the dinner and my mom and I stood up while everyone clapped for me. I'm not sure what they were clapping for but it made me feel really special. After it was all over, the Governor came by and took pictures with me. It was really neat and I can't wait to see how great we looked in the picture. And...This past Friday I got to ride a horse! It was so much fun. My mommy was scared because she has never been on a horse either. They made me Rodeo Queen and I got there and they made a beautiful sash that said Rodeo Queen, some flowers, and a PINK cowboy hat. They made the night really special for me and I had the best time. The next day (I told you we've been busy) my family and I went camping! We got to stay in a really nice camper and we fised and roasted marshmallows by the fire. It was a little chilly but my mom came prepared and I kept warm by the fire. I've had the best time lately working on my bucket list and my mom has been really busy making sure I'm having the best time. Everyone that has helped my mom has been really nice and I love that they want to help me mark off my bucket list. I've been so happy and having so much fun. I can't wait to do more things with my family and friends.  



Getting my Mani/Pedi Done

 

 



Smiling through the pain

People will tell me all the time that I am so strong. I appreciate the sentiment but I sure don’t feel it at times. Part of my problem is that I don’t like to let people in and I especially don’t like to be emotional in front of people. I can have a pretty tough exterior but it’s the things that people don’t get to see that show you the truth about someone. I have known families that lost their children and I see their post on Facebook and I can’t imagine how they feel but I'm sure that they have a lot more hurt than what they write. Nobody sees me when I’m lying in bed and I’m praying for Skylar and crying for hours on end or when I get a call from ARORA and they are explaining their process and to her I sound like I am very understanding and upbeat but the truth is every time she starts to talk I start to cry. Sometimes this gets the best of me and I’m not ashamed. I am a mom whose heart is breaking and no matter what I do the outcome will remain the same. The worst Skylar feels the more emotional I get. I hate that I am at work and I know she’s having a bad day at school. I want so bad to take her home and love on her. I am anxious and on edge the entire day. Seeing her is about the only thing that calms me down. I know that she’s here and safe and I can be with her. It’s something about being away from her all day and finally getting to see her again that puts me in a peaceful place.

I think I also punish myself. I like order and I like to plan things. It’s my nature and I’ve always been that way. The same applies to Skylar and this situation. I wanted everything taken care of so that I could spend all of my time and energy on just her. I didn’t want to have to plan anything after the fact. Planning it while she is here is hard enough, but I am still able to face the hard things and go home to her. I know that I wouldn’t be in a place to make these decisions after the fact. I’ve been able to think about what I would want and how I would want it. However, it takes a toll on you. It’s hard to plan a funeral for your child and pick out their casket and where they are going to be buried. I don’t think that any parent should ever have to do that. I had to go visit the funeral home on Saturday to get a quote for the headstone. I was there for over two hours talking to the funeral home director about what I wanted and how I wanted it to look. It’s going to be a custom headstone...Imagine that. Just sitting there and going through the process I’m not sure how anyone makes the plans after their loved ones have passed. To be honest I wanted to punch the lady by the time it was all said it done. She was very nice and I consider myself a very patient person but she was really pushing me to my limits. I can only imagine how people would feel trying to plan all of this right after their loved one passed. It’s overwhelming and frustrating and heart breaking. There are still some parts of it that I still can’t seem to want to think about. I try really hard to get things in order and to plan as much as I can so I can avoid it being thrown in my face all at once but it just makes things seem so real. I had someone tell me that it’s very sadistic to think about all of these things and plan it out. It may feel that way to them but I want to be in charge of my decisions and the things that I want and I just know that I will be too emotional to want to deal with any of it and I would regret it.

I’m not sure how to do this and I have really bad days and they seem to be coming more often and last a little bit longer. I pray every night for strength but the truth is I’m devastated and I want to scream some of the time. I’m mad that I have no idea what the future holds and it breaks my heart that Skylar might not be here on some of the biggest moments of my life. I want so bad to not work and stay home with her and spend every day of her life with her. I have to take it one day at a time and that’s really hard on me. It’s something new every day and by the time the day is over I am exhausted. Days like today make working and everything else seem so insignificant. I have spent at least a few hours talking to doctors, the nurses and her teacher and the only thing that I can do is sit at work hoping that her day gets better. My heart aches on the bad days because this is not what I want for her. I miss her laugh and her smile. I haven’t seen it in days and I fear for the day that she’s having such bad days that I don’t ever see it. If I seem strong it’s because I have a daughter who has taught me so much about life and how to be strong. She has taught me to smile through the pain because that’s all she’s ever done. God has given me the strength to be the mom that I am but Skylar has shown me the kind of strength that I need to carry on and not give up. She continues to be strong so I will continue to be strong for her. Especially on the days that she can’t be.

A lof of Story Left

I remember when I got the phone call from Dr. Stanford telling me Skylar’s diagnosis. My parents were in my hospital room. I had never heard of Schizencephaly. I was a single mom and now I have a child with a rare birth defect that is the worst case they’ve ever seen. It was assumed that Skylar had Hydrocephalus and we had talked with a Neurosurgeon while I was pregnant and we discussed a shunt and everything else. I was preparing for her to have surgery and then once they got the fluid off she could be a normal child or at least be able to do some things a typical child would. Well I found out that day that it would probably not be the case.

It took me awhile to Google Schizencephaly. I wasn’t sure what I would fine and I was scared that it would say that people with Schizencephaly didn’t live for very long. I finally decided to research it to see what information I could come up with. I knew that I would have to be Skylar’s advocate and I wanted to be knowledgeable about her condition and everything else about her. When I finally Googled it not much came up. You have a little information here and there but it’s truly a very rare birth defect. The causes are unknown and nobody can tell me how this happened to my child. The only thing that they do know is that Skylar had a stroke in utero and that is how she was born with Schizencephaly.  I appreciate the information of what caused it but it frustrated me that nobody could tell me how it happened. I blamed myself for a very long time. I was her mom and whatever happened to her was my fault. Since I was the person that carried her it was my fault that she was born with this. I was a failure as a mom that I could let something like this happen to my child.

As Skylar got older, we had more and more visits to ACH as well as hospital stays. It became our home away from home. However, it didn’t matter how many times we went to ACH we could tell someone what her diagnosis was and they had never heard of it. We went to Memphis for a week for video EEG monitoring for her seizures and there were at least 5 nurses that took care of her that had never heard of Schizencephaly. After a while, you recognize the people that have no idea what it is. They will ask you her diagnosis and when you say Schizencephaly they will look at you with a blank stare and just say oh. It’s obvious that they have no idea what it is but I can bet that they go to the closest computer and Google it, if they can spell it that is.

The hardest part about Skylar’s diagnosis is that there is no cure. I know nothing more about Skylar’s condition than I did 8 years ago. I know more about the brain and how it functions and things associated with it but 8 years later people still have no idea what it is. There’s also not much research on how this happens and what can be done to prevent it. I feel that it’s my purpose to help bring awareness to her condition. I have become part of a few birth defect research boards and I’m hoping to start advocating with March of Dimes and the big goal that I hope to achieve one day is to start a foundation that can bring awareness to Schizencephaly. I would love to help fund research so they can find out what causes babies like Skylar to have a stroke in utero and what can be done to prevent it. I want more people to know what it is and understand the severity of it and how it affects children and their family’s lives.

There are disabilities out there that are popular and well known. They receive millions of dollars in funding to help with research. You hear about them everywhere and while that is great for them and their families I hope that we can be the same way with these rare diagnoses.  Like I read on the internet, Skylar’s diagnosis is the most catastrophic and children do not live very long lives. Sadly, this is the case for Skylar and there’s nothing I can do to change that. I can’t change what happened to my baby but I hope to one day prevent it from happening to another child. I am Skylar’s advocate and I know just about everything about her and have a rolodex of information that I have stored over the past years in my brain. People find it impressive I just find it essential. One day Skylar will leave this Earth and the privilege of being her caregiver will be done but being her voice and her advocate will live on for as long as I have air in my lungs. Not every story has a happening ending no matter how much we pray for it but as long as I am able I will tell her story and share the importance of awareness and knowledge. I don’t feel as if our story is coming to end I feel like we are right in the middle of it and we still have a lot of story to tell.

Updated Bucket List

Exciting things are about to happen with Skylar's bucket list. I can't wait! Here is her updated bucket list!

The D Word

I get an email from a lady at Hospice this morning and she told me that 23,136 people have seen the post that they put on their Facebook about Skylar, 400 people liked it and 155 people had shared it. I couldn’t believe that 23,000 people had seen it. I was excited. For some reason, when I read what they had typed up about her a part of it didn’t sit well with me. It was very well written but part of it just stung a little bit. I don’t mean this to say that what they wrote offended me or that I didn’t like it. That’s not what I’m trying to convey. I have just never said to anyone that Skylar is dying. I feel like this whole situation is surreal. She’s here and she still laughing and smiling and I wish that it was not true. I wish that they were wrong. The thought of her not being here one day doesn’t process to me. I can’t imagine going one day without seeing her and not being around her so I can’t process the idea that she will never be here with me again. I think that’s why I refuse to use the word dying. That might be the case but to me I just can’t come to grips with using that word. I know that one day that it will happen but my heart and my mind hasn’t accepted it yet. When I am not with her, I know that in a few hours I get to go home and hold her and hear her laugh and be with her. My mind cannot process going home and she not be there or never getting to see her face or hear her laugh. It just feels empty. I don’t dwell on the idea that one day she will not be here because again I can’t seem to fathom it anyway. I try to focus on her life, her legacy, and making sure that she has the best life that she can. I pray that people hear her story and that her life makes a difference. This process is hard. It’s harder than I ever thought it would be but I know that it doesn’t come close to what I will feel when she’s no longer here. Just like my Pastor said a few weeks ago, I have never prayed harder for Heaven than I have in last few months. There are people that I love on this Earth but if I could join Skylar and never have to live one day without her and to be in Heaven with her, I would take it in a heartbeat. I wish that the process prepared you but from what I gather nothing prepares you. You’re never ready and it sucks to put it honestly. My heart aches and sometimes I have really bad days that make me feel like I can’t breathe. I have many talks with God telling him that I’m not ready for this and I can’t do this.

We went to see God’s Not Dead this weekend and I can see how having a special needs child and to have a child pass can test your faith. The professor in the movie felt that if there was a God why did he let bad things happen. Why did God take everything away from him? I think it would be easy to be mad and question why God let this happen. He has a purpose and a reason for everything and I don’t understand it and I don’t even agree with it but, in time, I hope to understand his purpose. I hope to gain clarity and understanding. It’s very hard to look at the blessings in my life and to say that God doesn’t exists.

I pray for strength and I pray that when the D word gets thrown around that it doesn’t derail me from what I want to accomplish with Skylar. I can’t spend my time worrying about when things are going to happen. I have a little girl who has a lot of life to live and I’m going to do whatever I can to make sure that it happens!