Parent of a terminally ill child

Being a parent of a terminal child is harder than anyone could ever imagine. I still have days that feel so surreal that one day she will no longer be here. I keep thinking that they are wrong that she is going to defy the odds and outlive me. You are often knocked back into reality when things worsen and you are forced to get use to their new normal. Life becomes increasingly harder, you sleep much less than you did before (which is hard to imagine you can sleep any less that you did before with a special needs child), you have small hospital room in your home and they consume 98% of your thoughts. She’s all I think about and she’s all I want to be around. I don’t get sitters to give myself a break I get sitters so that I can give Clint the time that he doesn’t typically get otherwise. I spend 90% of my nights when I get home from work holding her or being with her. I use to run, ride bikes, and train and I have no energy or willingness to give up my time to do any of it. Not only does their life become harder for them but the things that you enjoyed the most have become something of the past. You want to work out and you want to do things for yourself but I’d much rather look back on my life and say that I spent every moment with her that I could rather than beating my marathon time from the year before. You also become aware of how people are to you. People have been amazing and so supportive. We’ve experienced some amazing things and people have given me some incredible memories that I can never thank them enough for. However, you learn that you are ostracized from some conversations because people don’t want to make you feel bad by talking about their circumstances. People assume that because you are going through something unimaginable that you can't share in their joys or their experiences. On the other hand, you have friends that stop being friends with you because the situation is too hard or they don’t like all the attention that your child is getting now. Guess what if having her be normal or not have to go through this and never getting any attention from others then I’d gladly chose that but thankfully you have people who love her and want to give her the best life that she can possibly have. I’m not sorry for that. You also lose the help that you once had because people are too scared or just don’t want to watch a child that comes with all this medical equipment, instructions on when to apply oxygen or when to call 911. It’s a lot and most people don’t want to deal with it or aren’t able to so you lose a lot of support. Thankfully you still have some incredible people that are willing to help out and that love spending time with her and you know without fault they will be there. I have the type of personality that I save all of my emotions for when I’m in private. I have days where I spend a lot of time on the phone with doctors, emailing nurses or texting about Skylar but when I’m at work I try my best to do my job. I might rush home so I can see my child and I might stay up way too late thinking, worrying or crying myself to sleep. I feel like I seem so positive because this whole situation seems so surreal at times. The idea that one day she will not be here does not seem to be real. One thing you should know about her, she likes to keep people on their toes and she likes to do her own thing. She is constantly stumping the doctors and leaving them scratching their heads trying to figure out what could be going on with her. I am still praying that she proves them wrong and they are scratching their heads 20 years from now. You also realize how many people have been touched by your child’s life. I never expected the amount of love and support that we’ve received this past year. I had no idea what was to be expected when we started on her bucket list journey. You also start to feel like some doctors have given up on what to do with your child when they hear the word Hospice. They can’t understand why any medical intervention would need to be done. I am not giving up on my child nor am I deciding that you can stop trying to figure out what might be wrong with her. There will probably come a day when 5-6 appointments a month or sometimes 3-4 in a week are not necessary but right now we are going to continue to fight. She is giving me everything she has so I will give her the same. Your life has a completely different perspective than it used to as well. You find yourself making the same wish when you blow out your birthday candles (yes I still do that), when you see 11:11 or 3:33 on the clock, or when you say your prayers every night. You pray for comfort and for strength but most of all you pray and wish that they would be wrong and that she will life and incredibly long life. I try not to dwell on the idea that she won’t be here one day I just think about the fact that she’s here. That’s easier said than done because you have to grieve a child that is still here. You are making plans and having to make decisions as if they were no longer here and you grieve them. You still find comfort in the fact that they are still here and you can hold them and kiss them and pray that one day your arms will never have to be empty without them. There are no support groups for parents losing their child. Especially single moms who have spent their entire adulthood raising a special needs child alone and having to experience such heartache without another half to lean on. You refuse to go to a support group for parents that have lost children out of fear that you would offend them because they are experiencing a loss so great and their world is shattered and you can try to talk about how you feel but in reality my child is still here. It’s unfair to assume that they could help me process what I’m feeling when they are feeling much deeper than I can imagine at this point. There’s never been a guide on what to do with a special needs child that is severely disabled physically and mentally and there’s especially not one for special needs mothers. Maybe that’s what I need to write. There’s no preparing yourself for this life but there’s no preparing you for when it ends either. You’re world is shattered when you realize that the life that you thought you would have has changed and the child you  dreamt of having is now going to need a lot more love, care, and attention. You realize that your life isn’t over but that this is an implausible blessing. You don’t miss the ideas of what a typical child would do because you have your own accomplishments and things to celebrate. However, what started out to seem as a shattered dream ends with shattered spirits and hearts because the child that you never expected is the child that you can’t live without. The child that changed your entire world is the child that has given you more life and meaning that you can ever imagine. There is no guide or manual to any part of this. You live day by day and some days are much harder than others but you wake up praising the Lord that he has blessed your life and has given you another day with the most precious child in the world.

All I want

All I want:

All I want is nothing more
To hear you knocking at my door
'Cause if I could see your face once more
I could die as a happy man I'm sure

When you said your last goodbye
I died a little bit inside
I lay in tears in bed all night
Alone without you by my side

But If you loved me
Why did you leave me

Take my body
Take my body
All I want is
All I need is
To find somebody
I'll find somebody

Ooh oh
Ooh oh
Ooh oh
Ooh oh

'Cause you brought out the best of me
A part of me I'd never seen
You took my soul wiped it clean
Our love was made for movie screens

But If you loved me
Why did you leave me
Take my body
Take my body
All I want is
All I need is
To find somebody
I'll find somebody

Ooh oh
Ooh oh
Ooh oh
Ooh oh
Ooh ah
Ooh oh

Ooh, if you loved me
Why did you leave me
Take my body
Take my body
All I want is
All I need is
To find somebody
I'll find somebody

Like you, ooh

The first few lines of the song, “All I want is nothing more to hear you knocking at my door cause if I could see your face once more I could die as a happy man I’m sure. When you said your last goodbye I died a little bit inside.” I just think about the people that have succumbed to their illness and those parents that have lost their child or children who have lost their parents. I can fully see how when you lose someone that you love that a part of you dies with them. Your world is turned upside down and the person that you love more than life itself is gone and you are forced to face life without them. Everything about your life is different. The way you think, your routine, your life has changed. The hardest part, I think, is that you will never see their face again while you are on Earth. You can't just call them up or go to their house. You only have the memories and pictures that you took. I can only imagine what a parent, a child, a brother/sister or a widow would give to see their loved one just one more time. These past few weeks have been extremely hard. I have lost family members and I’ve had my heart broken but I’ve never felt a loss a great as losing a parent or a child. I thought I might have a few weeks ago but I'm thankful God had other plans. I know family members that have lost their child and just reading their posts and hearing their experience is heartbreaking. One thing is true, “Cause you brought out the best of me a part of me I’d never seen. You took my soul and wiped it clean,” is very true. Skylar is best part of me. She has brought out things in me that might not ever exist without her.

I know the book is written about a person with cancer but the same applies to anyone that is dying. One of the things that the book mentioned was things being a side effect of dying. Mind you, I’m not dying so I have no idea what it feels like but to watch someone you love who is seems to be almost just as hard. One of the things that the book mentioned was thinking that you won’t die is a side effect of dying. I think that part is true. I try to be realistic about Skylar but in my heart I just keep thinking that Skylar is always going to be here. My head knows that it’s not true but it can’t seem to convince the rest of me that it’s true. She will go through a period where she’s in a great mood and feeling great and it’s a reassurance that she’s going to be here for a while. Her bad days make it harder but I still just get this feeling that she will pull through it like she always does. My heart doesn’t want to believe that one day that she won’t. Maybe it’s denial. It also said that nostalgia was a side effect of dying which I believe to be true. I have read often how much parents would give anything to have the affection of their child or long to experience a memory that reminds them of their child. How often do we lose someone and something will happen that will remind us of our loved one and the grieving process takes several steps backwards? It can be as simple as a song on the radio, a toy at the store, or a holiday. I’m scared to be one of those parents. I can see their hurt and their pain and I fear that I won’t be able to get through it. I worry that live will have no meaning for me and my reason for existence has left me for a much better place. I keep saying that I have big plans for the future and I have things that I want to accomplish but will I see a point?

I know I write a lot about Skylar passing and it can seem if a dwell on the idea. That can’t be further from the truth. When I am not with Skylar it makes it harder especially when she’s having a bad day. When I’m with her, I don’t think about it much. I take advantage of every second and I focus on her life and the time I have. If I had it my way, she’d never go to school. We would stay home together and she’d never have to have a bad day without me. I hate the fact that she will have a bad day and I’m not there. As her mom, I feel like I should be. I know the people that she’s with are fully capable of taking care of her but I’m her mom. I should be there and I never want her to feel like I’m not. There’s no better feeling when she might have a bad day and I pick her up and her face lights up. She gets a huge smile on her face and she knows without a doubt that her mom is there! It’s an indescribable feeling when your child, who can’t communicate, shows you how excited they are to see you and how much better you have just made them feel. There is nothing in this world that is better than that smile and that feeling where she communicates in her own little way that she knows me and loves me.

Praying the last half is better than the first

I’ve tried to write something for a while now and I didn’t seem to get anywhere. Every time things start to look up something happens that knocks me back down lately. I’m just hoping that the last half of 2014 isn’t a bad as the first half has been. I try to take life in strides and not to get too bogged down on things but it gets really hard to stay positive when something is always happening. So I started 2014 with Skylar in hospice. I was devastated but I tried to focus on her bucket list and the fact that she’s still here and still doing well. She has her bad days but she still laughs and enjoys life and I’m thankful for that. Then my dad tells us that he was diagnosed with prostate cancer. Luckily it was caught very early so his prognosis is very good but no matter what he does it’s still going to alter his life in some way. Then a few weeks ago I thought that I might lose my mom. In the past 8 years I’ve watched Skylar struggle and be in pain and felt helpless. I wanted to do everything I could to take away her pain but I never really panic. I get scared but I still don’t panic in a bad situation. However, seeing my mom on a ventilator and struggling to breathe I panicked. They had just finished her first breath test and they told me that she had failed it but when I got to her room and she was really struggling hard my first initial reaction was someone please help her. I went and got the nurse and the respiratory therapist and after they changed some settings on the vent and the sedation kicked in she was finally resting. You always hope for the best but I consider myself a realist. I try to stay positive but I also try to prepare myself for what could happen. Despite everything that we were going through, I will admit that it was nice to spend time with my family. For whatever reason, my sister and I don’t have the closest relationship. We never have but in time of need we are there for each other. We talked more in those two weeks than I think we’ve talked all of last year. It was nice to have that closeness even if it was short-lived. What scared me the most is the idea that my biggest supporters were struggling. I have been a single mom since day one with Skylar. I wasn’t given an option of having the other “parent” in her life so when I had Skylar my parents knew that I would need extra support. I’ve had a poor pitiful me attitude for a little bit. In all honesty I kept thinking how cruel it was for me to have a child in hospice, a dad with cancer, and a mom in critical condition that we weren’t sure would make it. I was angry at the idea that the two people that I needed most in my life might not be here when I needed them the most. I knew that my dad was going to be okay. He was going to have some changes in his life but there wasn’t a threat of him succumbing to his cancer but I felt defeated. Growing up I didn’t have the closest relationship with my mom but I’m thankful that over the years we’ve grown really close. She never hesitated when it came to going to the doctor’s appointments and ultrasounds and being there after she was born. When I get news about Skylar the first thing I do is call my parents. They have been the other half of Skylar’s life for me. I call them for advice and try to talk to things I should do because making all of her life decisions is hard. I want to make the right choice that will benefit her and I try really hard to outweigh the risks versus the benefits of what she needs but they have been there to listen without hesitation. Life isn’t easy and things happen that make it seem like it’s impossible. I will never understand why things happen the way that they do and to the people that they happen to. There just doesn’t seem to be a balance sometimes. Like the old saying, “why do bad things happen to good people?” I am only 29 and I’ve had enough heartache to last a life time and I know that my experiences do not compare to some. I know that everyone has their own struggles and heartaches. I’m thankful for a lot of things in my life and I have a bad habit when something bad happens to think poor me. I’ve been angry and overwhelmed but I’m trying to see the bigger picture. I am thankful that my mom and Skylar are still both here. I’m thankful that my dad’s cancer is treatable and I’m praying that everyone I love is here to share in my goals and my future. I plan on getting married and having more children hopefully and doing great things with my life and I pray that everyone I love is here to be part of it because my future will not be as great if I don’t have them to share it with.

On the fast track

I had just finished reading “The Fault in our Stars” (There are going to be major spoilers in this post so if you haven’t read it I’m just warning you ahead of time) and it was a great book. The book was basically about a girl named Hazel who had terminal cancer. She was only a teenager and she meets a boy named Augustus at a cancer support group. Augustus was a cancer survivor but required his leg to be amputated. Long story short, they ended up falling in love. Hazel was terminal but the medication she was on was keeping her mets from getting bigger or spreading. However, Augustus ended up getting recurrence of his cancer in multiple places. Augustus who was cancer free ended up getting sick and he died before Hazel who had always been terminal. I can’t begin to imagine what it would be like to have a terminal illness. To see the people that you love knowing that you’d leave them behind and that your life with them would never go on. I also have no idea what it’s like to lose someone that you loved more than anything. Nonetheless, I do know the feeling of having the person that you love more than life itself be terminal. I feel like I am on a fast track for my life. I want things to happen and I want them to happen now. I am doing Skylar’s bucket list for the memories and so she can have every experience but there are also things that I want for my life that will never be the same if she’s not there for me to experience it with. There’s also this black cloud of uncertainty that breaks me down. Since I started this bucket list, we have been extremely busy and I was worried about how she’d do but she’s flourished. She’s done so well and I thought that we are taking steps forward instead of backwards and I’ve been so excited and then reality hits me some. You start to notice things that haven’t happened before. You start to realize that things in her body aren’t working as well as they use to. She has always been g-tube fed for most of her life but she’s been able to eat by mouth for years. She didn’t eat a lot but she enjoyed it and she enjoyed eating different things. Lately, she’s not able to. She’s had issues with being able to control her secretions so she often chokes and she sounds like she's always congested and has a rattle in her chest. There is a fear of aspiration and I understand but to me it’s just another step backwards and it’s hard to accept. When we leave the house we leave with oxygen, pulse ox monitor and her magnet. Those are the must have things when we leave and after talking to the hospice nurse we will probably have to start carrying the suction machine too. We’ve had it for a long but never really had to use it. It’s just the idea that we didn’t need it that made me feel good. I felt like I was having a small victory since that was one thing that we didn’t need to use or take with us and she wasn’t having issues with it. Now I feel like it’s a small defeat. I loved that book but the end was hard to read. It was hard to read about her losing her love and my heart just ached at the idea. I feel like my life has been put in fast forward as well and I feel pressure to need to do things so that Skylar can be part of it. I just have this feeling that the things that I want for myself will be incomplete. I can’t avoid the thought that one day she won’t be here and I know that no matter what my life will be incomplete. There will always be this void and this emptiness in my life. It’s just extremely hard because the only future I have ever wanted was with her. The idea of being married was nice but just an idea or a thought.

This past weekend, we were invited to go see “Heaven is for Real” and it was a great movie but it had me thinking about Heaven obviously. I think it would be hard to see a glimpse into Heaven and have to come back to this world. I know that Heaven will be beyond words and better than we can ever imagine. Skylar will no longer hurt, she will no longer need a wheelchair to walk, no more seizures, and no more pain. As much as I want that for her, I want her here or I want to be with her. I want the best of both worlds. I want her here with the perks of Heaven but then I want her here with me so that we can experience the future that I’ve always wanted. I don’t want her to experience Heaven without me and I don’t want my future without her here. It’s an extremely hard place to be in and an unfair place. It’s unfair that I will one day bury my child and that many parents before me have had to do the same. I wish I had ability to say that everything happens for a reason and to actually believe that with my whole heart. It’s a strange place to be in because I have faith that God has a bigger plan for me but I’m still pissed about the plan that I was given. I’m not sure that there will ever be a part of me that can accept the plan that includes me losing the love of my life.  I try not to focus on the idea of what could have been or the cliché that she will leave the world too soon. I try to celebrate the life that she has make the best of the circumstances because it’s absolutely worth it.

May 10, 2014

May 10, 2014 Schizencephaly Awareness Day!

 

TO ALL TO WHOM THESE PRESENTS COME- GREETINGS:

 

WHEREAS: Schizencephaly as an extremely rare congenital disorder characterized by a full-thickness cleft within the cerebral hemispheres. Large portions of the cerebral hemispheres may be absent and replaced by cerebrospinal fluid. Two types of Schizencephaly have been described, depending on the size of the area involved and the separation of the cleft lips.

 

WHEREAS: Schizencephaly is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Schizencephaly, or a subtype of Schizencephaly, affects less than 200,000 people in the US population.

 

WHERAS: Babies with clefts in both hemispheres (called bilateral clefts) commonly have developmental delays, delays in speech and language skills, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere (called unilateral clefts) are often paralyzed on one side of the body, but may have average to near-average intelligence.

 

WHEREAS: Individuals with Schizencephaly may also have an abnormally small head, mental retardation, partial or complete paralysis, or poor muscle tone. Most will experience seizures. Some individuals may have an excessive accumulation of fluid in the brain called hydrocephalus

 

WHEREAS: The prognosis of Schizencephaly is catastrophic, but depends essentially on the size of the clefts and the extent of neurological disabilities and the presence of associated lesions. Usually patient with open-lip Schizencephaly die at an earlier age than patient with the closed lip form. Sometimes, closed-lip Schizencephaly may not present clinically until later during the childhood and may live to early adulthood

 

WHEREAS: The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports a wide range of studies that explore the mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding how to prevent or treat developmental brain defects such as Schizencephaly.

 

WHEREAS: Only through medical research can effective treatment and prevention strategies for Schizencephaly be identified NOW,

 

THEREFOR, I, MIKE BEEBE, Governor of the State of Arkansas, by virtue of the authority vested in me by the laws of the state of Arkansas, do hereby proclaim May 10, 2014 .SCHIZENCEPHALY AWARENESS DAYacross the State, and I encourage patients, caregivers, health-care professionals, as well as the wider community, to join together to raise awareness about Schizencephaly and the need for medical research for effective treatment and prevention strategies

 

 

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