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.