This is my first blog, i have been reading my sister's blog for quite some time, but really have no idea what i should write about. She has an incredible blog at www.natandmarty.blogspot.com. As you can see i am really quite creative taking www.jbandangie.blogspot.com. Wow, this blog might be awesome :( I will be shocked if i ever have more than 3 people reading this.
So a little bit about me, i am in my mid 30s and have thought about doing some blogging for some time, mostly because of my sister. Reading her blog has brought me a lot of great moments, as well as many very sad ones reading about her struggles with Cystic Fibrosis (CF). CF is a tough little disease, you can find out more about it on Wikipedia, but i would just describe it as relentless and unforgiving, it just keeps going at your lungs and other organs and it doesn't give up. As a brother of someone who fights this disease every day, i have a lot of weird feelings about it, to start, i am the one who got lucky in the Genetics Lottery that is life. My parents both being carriers had me first who was perfectly healthy (3 of 4 chance), and my sister who wasn't (1 in 4 chance). Well, that is just not fair and my parents didn't have any way of knowing that especially if your first child is healthy. I don't feel guilty about it, but that thought, of the sheer luck in that, has been a huge part of the way i live and the way i think about everything. It is just luck, not up to you at all.... sometimes you win, sometimes you lose.
I think you should be happy when luck is on your side (but don't take too much pride in it) and when it isn't (which happens to all of us at some point in life), fight and hope that you have some good luck next, that's about all you can do.
My sister's life has truly been incredible through all the complications, hospital visits, treatments, physio, IVs, Emergency Rooms, month long hospital stays, etc, etc, that come with having a Terminal Disease like CF. Despite that, she has managed to build an incredible life that includes a great husband and a stunning daughter (you can read all about it on her blog, i wouldn't do it justice). All that is something to be very very proud of.
So at this point as her battle against the late stages of CF continues, we hope for some good luck, in the form of a lung donor. She is listed and waiting for a double lung transplant and has been on the list for over 2 months and now waiting it out in the hospital. These are tough times, but i really do think she will get lucky on this one.
In future blogs, as i get better at this, i will discuss what it's like being a sibling of someone with a terminal disease and since I am getting closer and closer to becoming a parent myself, i am sure i will talk about being a parent. Thanks for reading my first blog, i hope this gets easier.
I say goodbye. I say hello.
8 years ago
6 comments:
Good job John. Thank you for including me in your first post. See how I said POST. It's not your first BLOG, it's your first POST. Well it's your first blog too, but what you mean there is it's your first POST. Not being critical...just saying. =)
Love you.
Wow, 1 follower already...
Hi John,
I'm a friend of Natalia's and came across your site last night.
I too suffer from CF and have two younger brothers.
I think it is great that you started a blog! I know it must be very difficult as a sibling, and am interested in hearing your experiences, perspectives.
I am praying hard for your sister, and hoping that call comes soon!
Congratulations on expecting your first child so soon! How exciting!
Ramona
Yay!! Ramona....way to go!! you're the best.
Thanks Ramona, thank you for reading. I will continue with the CF brother perspective and will see what parenthood will bring.
Hi guys! Following the family from the Seattle area. Good to learn about you! I'll be checking in often.
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