Mother’s Day

This is the card I made for my beautiful, wonderful mom on Mother’s Day – I took the opportunity to get in some more practice with my colored pencils. I couldn’t ask for a better mom, and I can’t even begin to imagine facing the world without her. She is the brightest of lights in an otherwise often unbearably dark world. I love and appreciate her beyond words. 

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Happy Mother’s Day!

Meet baby O

The newest addition to our family; beautiful baby O, born in August. I got to meet her for the first time in October on Thanksgiving.

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Meet my brother.

Kody and I

*I wrote this yesterday but never got around to posting it.*

I had a doctor appointment today. Good thing it was in the afternoon though because I stayed up way too late talking to my brother on the phone. I think that we could spend hours talking about music. We both have a deep love and connection to the same kinds of music, we both get the same things out of it. We have a system; he’ll tell me about Red Rider and which songs of theirs are amazing, and how he remembers our dad singing Big League to him as a kid, and I’ll talk to him about Woody Guthrie and his influence on American folk music and legends like Bob Dylan and how he inspires me to hone my own skills at songwriting. We swap our current favorites and any previously unknown-to-us music so that we can both feel it and learn from it. I got him into Eddie Vedder and Alligator Stew, he got me into Pink Floyd and Steve Earl. 

We both live and thrive on music, we couldn’t handle a life without it, it’s in the air that we breathe. It’s a connection so deep that I can’t even begin to explain it properly. And, my brother is an unbelievable guitar player with the ability to send shivers down my spine and bring me to tears. He’s truly amazing and listening to him play makes me so proud of him. I really wish that he could be given the opportunity to go somewhere professionally with his music, to play and jam for a living. He deserves it because he truly is unspeakably skilled. (I wanted to upload an improvised song he sent me but I’m not nearly as tech savvy as I like to think and I’m not sure if he’d approve).

Music Guitar By @Doug88888 @flickr

It’s nice for us to have these talks and to be able to relate to each other about something we’re both so passionate about. Our relationship wasn’t always so easy going, in fact, it was quite the opposite. There were times when I’d go to bed thinking that the best thing that could ever happen to me would be to lose him, or to have never known him in the first place – now adays it hurts me to even type that. But, it was rough for a long time, our house was very broken for many years. He was in a really dark and bad place and because of it everyone else in the house was too. I wish that things had been different, but even at the worst of times I still just wanted him to be happy, and he definitely wasn’t.

With space and time to grow and heal, I understand him better now and can see that he sees the world in a different light than the rest (or most) of us. He despises the ignorance of society, our government and a school system that he views is only there to brainwash and conform us from a young age until adulthood. Even at an age as young as 6 years old he hated the forced conformation and oppression – he threw his lunch box in front of my mom’s car, angry that she was making him go to such a place. He could see something that the rest of us couldn’t.

I understand and share many of his views now, though, he tends to have a more paranoid and extremist viewpoint than my own. We both see how unbearably flawed, cruel and unfair that the world and the societies in it are. While my disgust towards the world tends to base more on an empathetic stance to the immense suffering that exists – that we cause – his tends to focus more on the radical disgust of an extremely sick, corrupted and faulty mainstream society and ruling system. 

Now he lives about 8 hours away and has a steady job and a girlfriend, he’s making good money and just bought his first vehicle. He’s in a good place, a place that I often wondered if he’d ever get to. The burden that lifts off of my mind and shoulders is massive – I don’t have to worry about where he’s going to sleep or if he’s okay anymore. I can breathe easy knowing he’s doing well.

I put the song above on his Ipod for him (the extended version), he told me that he wants it played at his funeral, whenever the day may come. It’s also one of my favorites. He said it makes him weepy because it makes him think of my mom and I. I know that the pain the both of us are in and our illnesses are really hard on him. He seems to think about it a lot. 

This Christmas, I’m thankful for my brother and the relationship that we have now. I’m thankful that his life has turned around and that he’s one his feet and doing well. I’m also thankful to have someone to share the greatest love and joy of my life with – music – who understands just what it means to me.

So, cheers brother, love ya.

One of my favorite places on Earth.

My grandparents built their house when my mom was just a baby on the most beautiful property. 40 years later and they’re still living there – though the upkeep may mean that they’ll have to sell in the near future. All of my best childhood memories were made here. It’s the definition of home for me.

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I’m lucky to have had such a place in my life growing up. It really was magical.

Happy birthday B!

Happy birthday to my little B who just turned 6 on Wednesday. I can’t believe how fast she’s growing up!

B has been my little buddy since the day that she was born. I absolutely love babies and kids but until her we never really had any in the family when I got older. We’ve always been very close and I love her to pieces. It’s hard because I don’t see her nearly as much as I want to or wish that I could – largely thanks to the pain and exhaustion. Sometimes I worry that she’s going to think that it’s because I don’t want to or don’t love her as much anymore. It makes me sad when I have to tell her that I can’t play because I’m sick or that I can’t pick her up because of my heart.

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When B was younger (1.5, 2) and I’d go see her she would cling to me as if it were for dear life, like she hadn’t seen me for weeks – even if it had only been a day or two. She would just sit limply in my arms, patting my back and whimpering like she was so afraid to let me go again. She was born the same year that the pain started, a bright spot in an otherwise often unbearably dark world.

Now, all of a sudden, she’s a rambunctious, headstrong 6 year old who’s going to school and growing like a weed. Things change so fast! But not everything; she still has more energy than anyone I’ve ever met, she still has her tell-tale quirks that make her the girl that I know and love and best of all, she’s still my little buddy.

So, happy birthday hun! I love you to the moon and back.

A quick update on pain and my doctor appointment.

It’s been a little while since my last post and I thought that I should update. Thank you all so much for the kind words and support. I know that I haven’t responded to any of the comments and/or emails but know that I have read them all multiple times and they mean so much to me. The love and compassion gives me strength when I need it the most.

I got in to see the doctor the same day that I last wrote. The appointment was brief because she was fitting me in but it was enough time for her to get the gist of just how badly I’m doing pain-wise and how painful the rib subluxation is. Actually, I think she was a bit startled by the state that I was in. I hadn’t slept yet so I was in zombie mode, I couldn’t put my shoes on without my mom’s help and I was on the verge of tears whenever I tried to explain how hard things have been lately. She seemed to grasp my situation and desperation fairly quickly. She ended up giving me a prescription for Hydromorph Contin which is just time release Dilaudid (the pain killer that I used to take every once in a while when my pain level was especially high), to take twice a day. I’m on a much higher dose of that then I want to be and it’s been stressing me out but even with that I’m still having a really hard time with the pain. If I hadn’t been side tracked I would’ve insisted on a different medication because I can’t take this one without taking gravol first. If I don’t then the nausea gets bad enough that I just end up throwing the medication back up. It seems wrong to put so many pills in my body everyday and the gravol in combination with my beta blocker and pain medication make me unbearably tired. That would be fine – beneficial even – except that it hurts my back to lay down for very long at a time.

I’ve been in a bit of a better mood than before. I enjoyed my Thanksgiving even though it was a little overwhelming and I was too sick to eat much. I got to meet my cousin’s 5 week old baby girl for the first time (I love babies) and see some family that I haven’t seen for a long time. I was thinking about what I was thankful for on Thanksgiving day and the first thing that came to my mind was my mom, of course. She’s been so amazing and supportive the past couple of weeks. She’s the only thing that’s kept me holding on and I know that I’m unbelievably lucky to have her. I’m also very thankful to have the opportunity to write out everything that I feel – good and bad – here on my blog and for all of you and your kind words.

Anyways, I’m still trucking along as best as I can. I haven’t slept yet so I hope to write a little more later today once I have.

If It’s Meant To Be

There’s a debate I see in different places on the internet, about whether a person with a genetic disorder should – or even has the right to – have a child when there’s a chance that they too will suffer from the same disorder. In this case I’m speaking of Marfan Syndrome and similar disorders. Is it okay for someone with this disorder to risk passing it on to a child? And, as with any issue, there are a lot of very opinionated people, people who strongly and loudly object, saying that it’s selfish and wrong. And just to clarify, this is my opinion on this matter only in relation to Marfan Syndrome and similar disorders, not the many other genetic disorders in which I’m unqualified to have an educated opinion.

Now, my mom didn’t have the disorder, neither of my parents did. I received the defected gene that causes a tissue disorder via what’s known as “spontaneous mutation”. Meaning, the gene wasn’t inherited, it just mutated on it’s own. This is the case in approximately 1 out of 4 instances of MFS. But, had one of my parents had the disorder already and still chosen to risk it by having biological children here is what my stance is on the issue:

I suffer because of this disorder, I do. I’m always in pain, I’ve had 7 surgeries, I take many medications with many side effects. I worry, about my future, about my heart, about in what way this disorder is going to affect my body next. So yes, clearly, I struggle because of this disorder.

But the thing is, I am who I am because of this disorder and the things that suffering has taught me. I feel like this life has opened my eyes to things that I wouldn’t miss for the world. Things like compassion and understanding and passion. You need to be passionate about the things that you do have in your life, or the struggle wouldn’t be worth the reward those things give you. I’ve been given the ability and the need to fight in order to live and in the end living becomes something that holds so much more meaning because of it. And maybe I live a life that hands me days where all I’ve accomplished is not giving up, but I also live a life that’s been blessed with only the most amazing people to help me through it. I am happy to be here, no matter how much it hurts, no matter how often I question whether or not I can handle it anymore. So, if you asked me; had I seen this life – the good, the bad, the people, the tears, the love, the pain – and been given the choice, would I have chosen to be born to this life, to this disorder? Yes.

Had my mom known there was a chance that I would have this disorder, and decided that it wasn’t worth the risk then none of this would’ve happened. None of the laughter, none of the smiles, the heartbreak, the hugs, the lessons about life that only pain – physical or emotional – can teach you. No “Marfamily” to lean on and learn from, no words of strength from the other side of the world, from strangers in nature but family and dear loved ones in circumstance. And, maybe I’m crazy for it but I would not change those things.

There is suffering everywhere in the world, in numbers incomprehensible, and in ways unimaginable. I have a roof over my head, food in my stomach, a home, a family and yes, I happen to have Marfan Syndrome, I happen to be in pain. But it’s part of life, it’s part of my life. And one day, if my life should allow it, and I need to make a choice: to risk having a child with my disorder, or not, I know my decision. And I know that it’s the right one because no matter what that child may face because of it, they will face it with a love unwavering and unconditional, and a strength unlike any other. If it’s meant to be, it will be.

Never forgotten.

Miss you my old friend. I can’t remember a time before you were a part of our family.

Some crazy kids.

Some pictures taken last night at a little family get-together for my mom’s birthday. They couldn’t get enough of the camera! I think B demanded that I take about 100 pictures of her making the exact same silly face. Oh well, we had fun.

Today consists of packing for our trip, but at least it’s a short one.