Sunday, August 4, 2013

Time. Is it a friend or foe for those of us living with Marfan Syndrome?

OK, before I tackle that question, I will take care of some business... As for time & this blog, it is WAY past time for this blog to be updated! I will spare you all the reasons why it has not been kept up. Some of the reasons are personal, some are shear procrastination. Nonetheless  it is getting done now, and if all goes well, (fingers crossed!) it will stay updated. We shall see...

So back to the original thought. When Daniel was diagnosed with Marfan in 1994 at age 31, time seemed so much against us. Many Marf's at the time were not living past their 40's & 50's, so it was pretty much accepted that he likely would not see his "Golden Years" unless he was one of the "lucky" few. Although we hoped that he would make it there, we lived with the realism that the odds were against him. 


Something happened along the way to his turning 50 a few weeks ago. Time has also become somewhat of a friend in that we (as a community) have not only grown in knowledge & resources to the point where we know many ways to prevent and minimize many of the effects of Marfan. Now we are seeing members of our Marf family reaching 60, 70, and even 1 former local NMF chapter member was still with us at 81 a couple of years ago. (I haven't heard an update since, but have also seen no obituary). We are now having open discussions on the need to do studies on the effect of aging on those with Marfan. With all the advances being made and every year we get further down the road, hope increases, making Marfan less fearful. Maybe, just maybe, time is on our side... How COOL is that? :-)

Don't get me wrong. We are are all TOO cognizant that their are some still dying too young, including a local young man named Andrew who was in his 20's lost this last fall. The shadow of fear of a sudden aortic dissection still lurks around the corner. We felt that fear again in January as Daniel's routine heart studies were suspicious for a possible small dissection that turned out to be scar tissue. The fear will never totally be gone, but for now, it is not dominant.


This week is again another routine cardiac follow up for Daniel (he is checked every 6 months), and my annual ECHO is a few weeks away, but I don't completely fear them. It is just our reality now. A "new normal" as many of us are fond of saying. And "normal", in whatever way where you chose to define it, is a very good place to be!

On an very upbeat note: Daniel & I just celebrated our 20th wedding anniversary! On the realist side, we have always been cautious and looked at 5 year increments when looking forward and we still do, but with the years ticking off so quickly our silver anniversary (25 years) seems VERY realistic...do we dare to hope for 50? 


In celebration of hitting the 20 year mark, I made a video to honor our accomplishment, and celebrate the gift of time together we have been given. It hasn't been easy, but we've gotten through it TOGETHER!

video

To my dear Hubby, Daniel Moore, I dedicate this to you & us! 
Happy 20th Anniversary dear, 
and looking forward to many, many more!!! 
♥ xoxoxo ♥

We met in 1991 at work, started dating in 1992, and were married in 1993. Through the trials of the loss of the kids' father in 1994, the diagnosis of Marfan Syndrome for both of us including open heart surgery for Daniel in 2000, helping to raise my kids from my first marriage, blended family stresses, job changes, 3 grandchildren and the death of our youngest grandson Jayden in 2010 to Congenital Diaphragmatic Hernia (CDH), it hasn't been easy, but we vowed forever, and forever we will!

6 comments:

  1. I haven't read all you blog but I'll do it. But now I'm so, so, so excited that I found you! I'm 25, I live in Poland and I'm marfan. And what is more - my husband is marfan too:) We met a few years ago in polish marfan group, now we are married. I was looking for people like us and I finally found you! Sorry for my english. I hope that your blog will be for me a source of many information:)
    Lots of greetings!
    Gosia

    PS. I have my own blog but it's in polish and it's blocked. If you want to read (by google translate for example) I have to have your email adress.

    ReplyDelete
    Replies
    1. Sorry for the delay in responding. I have been working on other projects & had neglected to check back.

      Thank you for following! I would like to follow your blog. My email is oregonmarfan@gmail.com. :-)

      Delete
  2. I forgot - Happy 20th Anniversary! I hope to be with my husband as long as you :)

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  3. Thank you for this blog. I look forward to reading your other posts.

    ReplyDelete

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