You Can’t Take The Sky From Me

Hello πŸ™‚ It’s pie. I’m sorry Teddy and I haven’t posted in a while. We actually have written a handful of posts we just haven’t perfected them to our liking. I wasn’t really expecting to write a post today but something came up. I hope you are having a wonderfully amazing winter break! My house has been filled with relatives and it is so much fun. I love this time of year. This is random but I was on the phone and the t.v. caught my eye. The news station was on and they were showing a video of a teenager about my age. At first I thought it was of a suicide case. But as I listened to the phone and read the headlines I realized he was an extremely popular YouTuber. I got really confused, why would a teenager who is so well off kill himself? This is where I was wrong, this boy did not commit suicide, he wasn’t murdered and he most certainly wasn’t kidnapped. He died. He died from a heart condition called (HCM) Hypertrophic Cardiomyopathy. Now you see why this is important to me. Teddy and I both have a rare syndrome that involves our hearts. Seeing how his heart changed his life and made him strong, made him inspirational, made him wise, and made his body weak pulled at my heart strings. Please watch his video.

His last few note cards were what really hit me. “I wish I NEVER woke up.”

Once in a dream I went to heaven. I never experienced happiness like I did in that dream. For some reason I was looking at myself look at heaven. I didn’t see heaven, but I felt heaven. My face had the happiest smile upon it and the light lit up my face. I was in heaven. I saw heaven. I knew that heaven was not a place to be afraid of. God showed Ben what heaven felt like. Heaven wasn’t a place of fear it is a place of perfection. Ben’s wish came true on December 25, 2011 Christmas Day. His heart once again stopped and this time it didn’t start back up again. I can’t say that I understand being so close to touching death and then returning to life. I have never nearly died. My heart has never stopped. But I have felt like I was going to die before. I have been afraid, terrified even, of my body. I am so thankful for his video though. When I think of all of the people his video touched it is more of a miracle than a video. I am having a hard time expressing what my heart is feeling. I am really sad, but also happy in knowing he is with God. That is exactly where everyone belongs. From what I can tell, he lived and died with God. I want to do the same. Our diseases have an impact on our lives and I am not going to deny that. We are not defined by the medication we take or the bodies we were born in. We are not being punished. As hard as it is to believe that it is true. I didn’t do anything to deserve my illness and neither did you. Some diseases result in death and others result in a life filled with pain. But this life has much more to offer than just pain. It offers moments of pure happiness and ease. Think of a moment where all of your cares vanished and you were left in a dream of bliss. No one can take those moments from you.

“Take my love, take my land
Take me where I cannot stand
I don’t care, I’m still free
You can’t take the sky from me
Take me out to the black
Tell them I ain’t comin’ back
Burn the land and boil the sea
You can’t take the sky from me
There’s no place I can be
Since I found Serenity
But you can’t take the sky from me…” Song from Firefly

No matter what my body does to me I will always have the hope of the sky. Corny? Maybe, but I don’t care. Think of how hopeful it is to look up at the sky and know there must be something more up there. Or at night when you are frightened and you see the light of the moon. One night a few years ago I was having an asthma attack. I could barely breath and I didn’t want to fall asleep. I figured if I fell asleep I would stop breathing to put it plainly I would suffocate and not wake up. I was praying so hard. Please God don’t let me die, help me breathe. I didn’t want to bother my parents who were sleeping. So I sat in my bathroom and read my bible. I found a verse

24Β “When you lie down, you will not be afraid;Β when you lie down, your sleep will be sweet.” Proverbs 3:24

I was so amazed. I felt like God had sent me a letter or he had spoken directly to me. It was almost as if he put this one verse in the bible because he knew at one point in my life I would need it. I was no longer afraid and I went back to sleep. I didn’t know if that verse meant I would wake up the next day but I knew it meant I would be with God. I don’t know if this is the first time I have ever mentioned I have asthma. I got it when I was in first grade. I would get awful headaches and have a hard time breathing. I missed a good majority of 1st grade. I don’t remember much of it at all. I was on a nebulizer (a breathing machine) four times a day. Preschool, kindergarten, 2nd grade, and 3rd grade are the only years I haven’t been sick in my life. I am 17. I am not telling you any of this for pity, I don’t want your pity. I want to show you that you are not alone. Teddy and I want to help you. I want you to be happy. Through my years of sickness my family made me happy. I’m sorry this is a melancholy post. Teddy and I prefer to focus on happy things but life isn’t always happy. The focus of this post isn’t sadness though! You can have a hard life and still be happy. Teddy and I are living proof of this. Yes, some days are hard but we don’t let our sickness define us. One thing I really hate about being sick is it makes you have to constantly worry about yourself. When I first got sick I felt really selfish because I was always putting myself first. I’ve learned there is a balance. Take care of your body but also don’t lose your compassion for other things (including friends, laughter, sports, and animals!!). You don’t have to choose between what you do to survive and what you love to stay sane. Sometimes all you need is your medication and your fuzzy cat. My cat is currently sitting on the top of my chair with his booty in my face.

I guess I am saying, you can have a life altering illness and still love life. I love this life. I am so grateful for my time, space, family and God. Hold on to your memories of your healthy body. Just because things change doesn’t mean you have to forget your old self. I remember saying when I was younger to my Mom ” Mom, I don’t even remember how it feels to be healthy.” It took years for that to change. I am still sick but thankfully I do have days that make me forget what it means to be sick. When you forget how it feels to be healthy think of a time where you were so happy that your sickness was cured momentarily. I don’t want to watch this life go by in my bed. I don’t want to be in the sidelines, I want to be in the game. Some days you are going to be sitting on the bench because you are too sick to play. While other days you will the running and striving on the field.

The important thing that you must realize is sitting on the bench is okay too. But don’t give up and sit on the bleachers. Don’t give up your will to fight. Fight for this life. Strive for happiness. You may feel at times you have lost the ground beneath your feet but I guarantee you will always have the sky. I am not going to give up. Are you? You will never know how far you can go unless you push yourself. This may be as simple as taking a 5 minute walk around your neighborhood. A 5 minute walk is NOT a failure! With POTS it can be difficult to stand let alone walk. Add a minute to your walk don’t run if you think you will faint. There is a difference between striving for a new goal and stupidly pushing your body until it collapses. I remember when I could barely go on a walk around my neighborhood now I can go on 6 mile hikes. Push for your goals. Sometimes it may seem that a goal is ridiculously stupid because everyone else takes it for granted while you are unable to do it. Don’t be so hard on yourself. Give your self a stinking break okay? I mean it! STOP PITYING YOURSELF and stop feeling worthless for not being able to run. Pity does squat for your self esteem, do you really want that? Build yourself up. Please? Listen to me πŸ™‚ I would like to believe I know what I am talking about. Even if I don’t please don’t mention it to me (for my self esteem’s sake).

Lastly, I put two back to back posts about death next to each other because Teddy and I prefer happy blogs. Hopefully I have gotten this subject out of my system for a little while πŸ™‚ My point is just this, it is easier to accept the cards in your hand and love life for what you have been given. You only get one hand of cards in life, so why not make the most of what you have. I hope you have a splendid weekend! Rest up and laugh. As always thanks for reading πŸ™‚


Pie (yumm…..pie sounds really good right now)


One comment on “You Can’t Take The Sky From Me

  1. Dear Pie,
    I wanted to find Mary Oliver’s poem that includes the words “And Still Love Life” for a blog I am trying to write and I came upon your blog. I was so moved to read this one! I am 66 years old and probably do not resemble any of your readers, but you and Teddy really inspired me. I am with you – if we make a choice to live, then we have to find a way to love life! And you and Teddy find such wonderful reasons, including the photos and the drawings. Beautiful!

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