I often write the blogs as I sit by Natalia's bed at the hospital. If she takes a nap or is sedated, I have time to think and write. I don't often re-read any of the posts, I probably should, but don't. Last nite, I was reading a number of blogs that I follow, and I happened to re-read my latest Natalia update. I didn't like the way it came across, especially the part about things being "normal". I really didn't mean to imply that our life is not normal right now. Normal might just not be the right word for it. I am fully aware that a lot of the readers of both mine and natalia's blogs are dealing with exactly the same situation as we are, and I am sorry if my words offended. I hope they didn't, but let me clarify anyway.
Normal is different for everyone. Our normal has included CF and now a Double-Lung Transplant. It is what we know. I didn't mean to imply in any way that our life is abnormal, it is what it is, and we just roll with whatever comes next. Normal is the wrong word here since it is hard to define and me implying that normal doesn't include hospitals, surgeries and illness is just the wrong statement. Actually, to be honest I think we have in my opinion the most normal life ever (especially Natalia) and to be honest we don't spend too much time thinking, what if... So this to me is as normal as it gets.
Sorry to all the readers.
John.
I say goodbye. I say hello.
7 years ago
7 comments:
Hi John,
Believe it or not, I do understnad. Everyone's normal is different and you have accepted that this is your normal and it's fine. It's hard, but when it is you living it it kinda gets easier because you see it diffferently than everyone else does. You have created a life around your family and what is going on with them. This for now is your normal. I'm not offended at all. I do understand this though.
If this is confusing or doesn't make sense, I'm sorry. I'm just trying to let you know that this makes sense to me. when you or a family member are sick you create a new norm around you that to others doesn't make sense, but to you it does and although your life is less than perfect or normal, for you right now it is and you are OK with it.
Taryn
Stress and worry have been a huge part of your families life for so long now. I think that you are looking forward to a time when you don't have to worry so much or feel that intense stress.
Please don't stress the little things.....we all understand....at least I think most of us do. As much as humanly possible not actually living in your shoes, that is....
All that I know personally about CF has come from a wee bit of info picked up through 50 yrs. of living and reading Natalia's blog.
One thing I've come to admire is how "normal" a life Natalia lives. Going through high school, going to college, marriage and now her precious baby girl. However, I realize that with that "normal" is a whole lot of extras related to CF that someone who doesn't have it or have a family member who is dealing with can't even fathom. That's what makes what she has accomplished in her life so extraordinary.
For you, Natalia's family, I can only imagine what the years have meant for all of you. I have been so impressed with the love and dedication you all offer one another. Natalia is so blessed to have a family who immerses itself in being there for her 200%.
I knew when you said you were looking forward to life returning to normal that you weren't insinuating that the life you led prior to Natalia's new lungs was abnormal.
I hope my rambling made some sense. It's been a long week here and I probably shouldn't be commenting on blogs when I'm so mentally spent.
I think most of us get it. It's not really about normal or not normal, I think it would be nice when life gets "boring". You know, no surprises, no setbacks, regular stresses of living rather than surviving, those sort of things. Back to the days when your worry about getting to work on time or not having enough milk in the house. You guys have been under tremendous stress for the BIG things that it has become somewhat 'normal' and always eventful. Life will be nice when things get 'boring' just day to day living and loving. Dont' worry about your wording, this is your blog, and therefore your truths.
Hugs
I actually felt upset when I read this because after all that you have been through recently you felt that you had to apologize. I don't think that you have anything to apologize for at all.
You have been such an incredible brother to Natalia. Very few would dedicate all of the time, energy and love that you do to helping your sister through this journey. You were ready and willing to undergo major surgery as a new father to help your sister. We should all be so lucky to have a brother like you who we can count on.
This is a place where you get to write what you think and feel and not have to worry about what is "politically correct".
Everyone's normal is different. I hope you get your normal soon.
thank you all. love those responses. it actually wasn't caused by anyone, i just didn't like the word. boring is totally the right word. thanks you all.
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