It's official...Schizencephaly Awareness Day!

I have made it my mission in life to inform people about Schizencephaly and other rare diseases. I have a lot of friends who have children with Autism and Down Syndrome and many other common birth defects.  I have no idea what other families go through on a daily basis with their special needs child. Every child is different and every family has their challenges and heartache. I really hate to admit that when I hear about walks and different things to help raise money for the more common birth defects I get almost annoyed. Don’t misunderstand me…I am happy that they want to do so much to raise funds for different birth defects and help bring awareness. I would never discourage someone wanting to raise money for any cause that could benefit special needs children. Maybe it’s just jealousy because there are never fundraisers for Schizencephaly and when you aren’t raising funds or awareness nobody knows about it and when nobody knows about it they aren’t doing research on it to find out what causes it. When you look at the more rare birth defects, from my experience, they are the more debilitating for people. This is why I want to educate people about Schizencephaly. I want people to know what it is and I have a goal to have a foundation that raises money to figure out why children are born with this and why babies are having strokes in utero. I want to help future mothers prepare for their pregnancies and know what they can do to prevent this from happening.

It’s a small start but I found out today that the Governor has approved for May 10^th to officially be Schizencephaly Awareness Day in Arkansas! I’m hoping that one day it will be recognized nationally but this is something that I couldn’t be happier about. I’ve never had more of a reason to educate others and more of a passion to bring awareness to anything like I have this.  I couldn’t prevent this from happening to Skylar but one day we will figure out the cause and one day we will try to prevent this from happening. This is a BIG day for me and I couldn’t be prouder. This is just the beginning. 

Nuclear Meltdown!

So I had a nuclear meltdown while we were in New York City. We had been there for several days and when the firemen stopped up and we went to get a picture it was then that I noticed that my camera was missing. I was devastated. Everything that had happened on this trip was gone. Thankfully after a lot of prayers and retracing our steps we found it. God was testing me that day and I failed. I failed miserably. I’m thankful that we found it and that Clint didn’t go running and screaming in the other direction or get upset with me. I just know that one day the only things I will have are pictures to look at to remember everything. I was very emotional even after we found it and even still now. We had the most amazing time and it was a trip that I will never forget but after that I started thinking that I won’t have years and years of these memories. I have developed this need and desire to be around her every chance I get. Not for a second did I think that we might be able to do so much more if Skylar wasn’t here. All I could think of was that this trip has been amazing because she is here. Being able to be around her all day and all night was one of the best things about the trip for me. I wasn’t looking forward to going home and having to send her to school while I went to work. I have loved every part of this bucket list. I have loved seeing her smile and having a great time but its gets harder for me. The more I am with her and the more memories that we make the more and more I want to hold on to her. I don’t want it to ever end. I never want to wake up and not see her face or smile and the more that I get to experience these things with her the more the idea of her not being here becomes an impossible one to fathom. I get so much joy out of watching her smile, laugh, and talk to me. She is fully aware of what she is saying and I’m sure when we are both in Heaven I’m going to get in ear full of what she was trying to tell me. I can even see a duh mom moment! I’m thankful she had a good trip and was healthy enough to enjoy it. It was the highlight of my week and I try really hard to focus on the positive things. It’s just really hard when we are doing these wonderful things together to not get upset that one day I won’t have this. I fear that day because the longer she is here the more that I realize that I don’t want to live a second without her. I will continue to pray that God comes back and spares me the pain of having to lose her. I pray for Heaven and I pray we can be there together and her not have to wait for me because I certainly don’t want to have to wait. The photos that I have of Skylar are more than memories. They are my scrapbook of her life, my treasure at the end of the rainbow, my lottery ticket…they are everything to me and I thank God that they were lost. I’m glad that the memories that we created were able to be shared and saved for me to have for the rest of my life. I look at her pictures often and it’s hard for me to believe that it’s been eight years. There are parts of her life as a baby that I don’t remember. Of course you remember the significant events but the small things are what I don’t remember. I want to capture the small things so that in 8 more years they aren’t forgotten. I wish and I pray daily for God to give me the strength because there are many days I can’t but think that one day my life as I have known it will be forever changed and I will never be ready for it. I pray for wisdom to make decisions and I pray that one day I won’t have to make hard decisions about her life. It was great advice from a very wise mom. I pray that God won’t put me in the situation to have to choose to sustain her life or let her go.  I thank him for every day but I pray and ask for many more. I have had an amazing time with Skylar lately and I am in a selfish place. I don’t want it to end and I want it every day/all day. They say a picture is worth a 1000 words but I guess in my case it’s worth an EPIC meltdown if they were ever lost!  

Bucket List - New York City

I have always loved New York City and this past week I got to show Skylar what it was all about. There are some things that I have noticed about taking Skylar to New York City. You have two kinds of people and there is no in between. You have the people that adore Skylar. They talk to her and are so sweet and they let me know how great of a mom I am and how blessed I am OR you have the others that just stare. It's as if they have never seen a child in a wheelchair before. We've had people stop dead in their tracks just to stare. However, getting around in NYC with a wheelchair wasn't too bad. We were able to call a handicap accessible taxi everywhere we went. 

I have to admit that I am sad to be back. I had the most amazing trip with Skylar and these memories are ones that I will never forget. I was worried that she might not be able to withstand everything that I wanted her to see but it was her that was still laughing and ready for more at the end of the night. 

We started the main part of our vacation at the Yankees game. We had met a lady that I had been emailing back and forth. We showed up knowing that we'd get to go on a tour of the stadium and hopefully go to batting practice. We received so much more than I would have ever imagined. We got a personal tour of the stadium and got to meet a few Yankees players. The best part was meeting Jeter and Mark Teixeira. They were so down to earth and so sweet to Skylar. After our tour, they took us to the restaurant. They had given us passes to everything we wanted to eat the entire night along with our own covered suite. It was the an incredible night and one that I will never forget.

We spent the rest of the days seeing all the main sights in NYC. We took Skylar to the Empire State Building, the Statue of Liberty, the 911 Memorial, the main stores in Times Square, fao schwarz, museums, movies, and so many other places. The best part was that she loved every minute of it. 

The last day that we were there we got tickets to go see Aladdin on Broadway. It was AMAZING. She got the VIP treatment there as well. She loved it and so did we. It was the best Broadway show I've ever seen. 

I loved how the city embraced her. It was like being in Disney World all over again. We never waited in line. Even at restaurants when there was a 45-60 minute wait they would seat us as soon as they saw us. One day while we were walking in Times Square we passed a firehouse with a few firemen sitting outside. They immediately started talking to Skylar as we passed by and they were thrilled to be part of Skylar's 1000 hugs and smiles. They even gave her a shirt so she'd always remember their firehouse! New York loud and bright and busy and it was everything that she's ever loved. She loved the noise and the bright lights. 

I can't express how much I appreciate everyone that allowed this trip to happen. I was sad to come home and have it all end. Being able to spend everyday with Skylar this past week has been something that I don't want to let go of just yet. The best part of the trip was being there with Skylar and her laughing and enjoying every minute of it. These memories are ones that I will never forget and I am grateful to everyone who made it happen. 

Skylar on TV

They did a really great job last night with the story. Skylar was so happy watching herself. It means a lot to have her story shared and viewed by so many. It was even show in Fayetteville this morning. I just feel like I have a great purpose with Skylar's diagnosis and my goal is to raise money and help fund research so that parents do not have to bury their child at a young age because of a disability that nobody is doing research on. When you don't hear about a disability or don't know anything about it it means that research is typically not being done on it. You hear about Autism and Down Syndrome because more children are diagnosed with it and it's important to know what caused them and ways to prevent it but when my child is born with a diagnosis and the things that you read about it is that it's a catastrophic diagnosis your heart stops. She wasn't expected to live to be 8 so she has beaten a lot of odds but if I could do anything to prevent another child having her diagnosis I'd walk on fire to do it. It's so unfair to have a any child go through the things that they do and my goal is reduce the number of children affected by any disability especially the ones you never hear about. Skylar might not be able to tell her story but that's my job as her mom and to ensure that her life was lived to the fullest. Her story is far from over and 20 years from now I have a feeling we will still be hearing about Skylar and giving her credit for what she left behind and what she started!

Here it is if you missed it.

http://www.clipsyndicate.com/video/play/5054042/skylar_s_bucket_list

http://www.arkansasmatters.com/story/d/story/family-raises-awareness-with-bucket-list-for-termi/40221/GcsEmLgR2kGTsGZgvUwdHw

BRYANT, AR--An Arkansas girl is living out her life's dreams while she can, marking off items on her bucket list.

It may sound unusual for an 8-year-old to have a bucket list, but when doctors placed Skylar Stone on hospice care a few months ago her mother, Lindsey, started making a list of things most parents want to see their children do. The list includes going to a sleepover and graduating from high school. Now they're crossing off as many items as she can not knowing how much time they have left.

In dance class, with her volunteer buddy right behind her, Skylar can glide across the dance floor with the other kids with ease, even though she suffers from Schizencephaly.

"She's got a little a less than half a brain altogether. You look at an MRI and it's all black, no brain tissue just fluid," her mother explains.

Her condition makes some other typical activities, like going to a sleepover, nearly impossible.

"There is no way I can have her be invited and say are the 13 medicines she takes at night, here is her pulse machine, here is oxygen if she needs it, it's a big responsibility," says Lindsey Stone.

So her mother made sure to put it on Skylar's bucket list, a list she created to help her cope with Skylar's prognosis.

"When they put her in hospice it was a pretty big shock. I knew she was regressing but I didn't think we were at his point," she says.

So Stone started writing and they got to work. One of her first achievements was attending a slumber party.

"They did nails and danced and sang. She stayed up longer than anybody," says Stone.

Every night for the past two weeks, the pair have been busy making memories. Skylar has gone camping, gotten a manicure and met a few celebrities.

They even allowed KARK to join them on Skylar's quest to capture at least a thousand hugs and smiles.

"She has the best laugh you have ever heard she makes you laugh with her," says Stone.

They hope with each photo and memory, people learn more about Schizencephaly and Skylar.

"At least I can give her a legacy she deserves when she is not here," she says.

The family is also hoping to raise awareness with an awareness walk. They're hosting an event titled "Superhero Walk for Awareness, featuring Super Skylar" May 10th in Bishop Park in Bryant from 10 a.m to 2 p.m. To learn more about the event and keep up with Skylar, click here.  

Schizencephaly Awareness

So my mom has been working with Ms. Candy at Arkansas Hospice to design a really cool shirt for me. They finally came up with something really cool and I am super excited to get them ordered. I’m hoping that people will wear them so that we everyone can learn what Schizencephaly is. The shirts will be Sky blue so the front won't have the blue back ground. That will be the color of the shirt.

The front

The back

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