The Life Well Lived

2023 Family

On our first date, I asked my now wife how her life would be different in five years if it went as she would wish.  She, being a pediatric nurse at Hopkins, said she would be a foster parent for medically fragile children.  Five years after our first date and having been married for two years at that time, we took in our first foster daughter whom we later adopted.  Her history includes five heart surgeries, a stroke, and numerous other medical incidents.  We took in a premie/shaken boy a year after our foster daughter, and we adopted him too.  Then, we took in a premie blind girl whom we adopted in 2015.

We thought we were done on the adoption front until we were challenged to take in a kid with the smallest halo Hopkins had ever made.  He was recovering from a ping pong fracture of his skull, a broken neck and various other broken bones.  None of the other foster parents could deal with a child who needed a special car seat and was difficult to hold because the screw in the halo were uncomfortable for any holding him.  However, the halo eventually came off, and he hasn’t  stopped moving since.  He is like an American Ninja warrior in training with phenomenal balance and strength.  We adopted him in 2018, and now we are a family of six.

As for me, I am a 40yearold project manager for the U.S. Census Bureau.  I have had Multiple Sclerosis since 2005.  I took Tysabri to treat it for  eight and a half years which seems to have stopped my flares.  When I started Tysabri, I did so knowing the risks included brain infection and possible death.  Still the decision was “Give me five good years over thirty crappy ones.  If there is some terrible side effect down the road, let it be a road well traveled.”  I have moved on from Tysabri when the risks were growing too high.  After a few other treatments, I have stabilized on Tecfidera.

For all our medical trials, ours is a very lucky family and the road, while bumpy at times, is beautiful.  You have found us at thelifewelllived.net

(Visited 12,668 times, 1 visits today)
Share

106 thoughts on “The Life Well Lived”

  1. At this time it appears like Exression Engine is tthe preferred bloggig
    platform available right now. (from what I’ve read)
    Is tuat what you are using on your blog?

  2. I see you don’t monetize your site, don’t waste your traffic, you can earn additional
    bucks every month because you’ve got high quality content.
    If you want to know how to make extra money, search for: Ercannou’s essential adsense alternative

  3. I’m not sure the place you’re getting your information, however
    good topic. I must spend a while studying much more or working out more.
    Thanks for excellent info I used to be on the lookout for this info for my mission.

  4. Boom Beach Heavy and Zooka strong push laying-in-corner layout without drug suspended or beaten Great God Boom Beach Heavy and Zooka strong push laying-in-corner layout video viewing. Players W Great God no drugs to fight the god old days hq Tas, the day hq players spent half a year in the rankings.

  5. I believe this is one of the such a lot important information for me.
    And i am satisfied studying your article. But should statement on few basic issues, The
    website taste is wonderful, the articles is truly nice : D.
    Excellent job, cheers

  6. Good day very cool blog!! Guy .. Beautiful .. Superb .. I’ll bookmark your website
    and take the feeds also? I am glad to seek out a lot of
    helpful info here within the put up, we need develop extra techniques on this regard, thank you for sharing.
    . . . . .

    1. Thanks for the compliment, I tried to follow your link back, but I do not know the language. What language is it?

  7. Excellent goods from you, man. I have understand your stuff previous to and you’re just extremely fantastic.
    I actually like what you have acquired here, really like what you are stating
    and the way in which you say it. You make it enjoyable and you still care for to keep it sensible.
    I can’t wait to read much more from you. This is really a tremendous website.

  8. This is really interesting, You are a very skilled blogger.
    I’ve joined your feed and look forward to seeking more of your wonderful post.
    Also, I have shared your site in my social networks!

    1. Thank you. I am trying to document some of our family’s experiences and thoughts on medical research I come across.

    1. I am most definitely not famous. Few people find their way here, and that is fine with me. I write because it forces me to think differently about the world as I experience it. It gives me a way to go back and review some of the events in our family life which may or may not have seemed important at the time. Thank you for your kind words.

    1. Raising five kids with disability is a good blog about raising sick kids. Wheelchair kamikaze and my new normals are great MS blogs. I hope this covers the subjects in which you are interested.

    1. I’m glad you like it. Where are you from? I see your link, but I do not recognize the language.

    1. Thank you. I am writing more, but recent events have robbed me of time and energy to write. I am trying.

  9. You can certainly see your enthusiasm within the paintings you write. The world hopes for even more passionate writers like you who aren’t afraid to say how they believe. Always follow your heart.

  10. Hi, Geof. We are so glad we stumbled on your website through your comment on My New Normals. We really enjoy your writing, and you have such great stories to tell! You have a valued perspective through your life with MS (something we both can relate to!). We look forward to reading more from you, and we wish you a very happy and healthy 2015 🙂

    1. Thanks. I love that blog and the perspective she takes. Even writing for primarily for me to organize thoughts, I don’t know if I could be as open as she is with her emotions. I have a much easier time writing about what I think is happening than what I feel. Frequently, I find the comments on her blog as enlightening as her posts. I went over to your site, and I can totally understand the regrets for things left undone in fear of MS. I keep living by the words from the song in Rent, “How do you feel today? How do you feel today? Best all year!” (rough paraphrasing)

  11. Hi there! This is my first comment here so I just wanted to give a quick shout
    out and say I really enjoy reading through your articles.

    Can you suggest any other blogs/websites/forums that go over the same subjects?
    Many thanks!

    1. The two which come to mind are wheelchair kamikazee and mynewnormals. Both are blogs by patients with MS, though with wheelchair’s case it may be that or something else like progressive MS. They are both very good blogs.

  12. Hey there! Someone in my Facebook group shared this site with us so I came to check it out.
    I’m definitely loving the information. I’m bookmarking and will be tweeting this to
    my followers! Excellent blog and terrific design.

    1. Hmm, a Disney movie blog? My house has basically thrown up Disney with our kids and my wife being huge fans. Now that Disney owns Star Wars, I guess I have to throw my hat in the ring as a Disney fan too. In truth, I always hold my own on the Disney trivia games, so it is not like I can claim anything other than fandom.

  13. Wow, marvelous blog layout! How lengthy have you been running a blog for?

    you make blogging look easy. The entire glance of your web site is excellent, let alone the content!

    site (Dorthy)

    1. I have been blogging for about 5 years, but only a bit over a year at this address. Before I was at thelifewelllived.blogspot.com, but I decided I wanted to own what I write. For me, writing is an exercise forcing my mind to slow down and try to look at things from a different perspective than the one from the break neck pace at which I live day to day.

  14. I’m really loving the theme/design of your website. Do
    you ever run into any browser compatibility issues? A handful
    of my blog audience have complained about my website not working correctly in Explorer but looks great in Firefox.
    Do you have any suggestions to help fix this issue?

    web site (Karolyn)

    1. I haven’t hit any problems thus far. I use both a PC and a MAC when writing, depending on where I am. I figure if it works on both those platforms, I don’t need to worry about others. Since I primarily write for me and my family, I don’t spend a lot of time worrying about how it transfers across other mediums or browsers.

  15. Having read this I believed it was extremely enlightening.
    I appreciate you spending some time and effort to put
    this content together. I once again find myself spending way too much
    time both reading and commenting. But so what, it was still worthwhile!

    Also visit my web site – Maricela (kiwibox.com)

    1. Thanks. I like your blog too. I always find animals reactions to kids almost as fascinating as our kids reactions to animals. There seems to be a natural acceptance. We’ve had dogs who hate people tolerate our kids climbing all over them, pulling their tale, etc. At the same time our kids are willing to literally share the food in their mouth with dogs (YUCK!).

  16. This is very interesting, You are a very skilled blogger.
    I’ve joined your feed and look forward to seeking moire of your wonderful post.
    Also, I’ve shared your site in my social networks!

  17. I like the helpful info you supply in your articles.
    I’ll bookmark your weblog and take a look at again here frequently.

    I’mreasonably certain I will learn many new stuff right right here!
    Best of luck for the next!

  18. I’d like to thank you for the efforts you’ve put in writing this website.

    I am hoping to see the same high-grade blog posts by you later on as well.
    In truth, your creative writing abilities has inspired me to get my own, personal blog now
    😉

  19. With havin so much content and articles do you ever run into any
    problems of plagorism or copyright violation? My site has
    a lot of completely unique content I’ve either created myself or outsourced but it seems a lot of it
    is popping it up all over the web without
    my authorization. Do you know any solutions to help reduce content from being
    ripped off? I’d genuinely appreciate it.

    1. I have never given much thought to the problem. I write for fun and as a mind saving exercise. If other people find it useful, that is great. I am not making money off my blog, and to be honest, somebody else monetizing my blog is the only use which would annoy me.

    1. Thank you. I am no expert. I try to run/write for the blog as a hobby. I just incorporate things from other sites which I like when I know how to do it.

  20. I’m not sure where you’re getting your information, but great topic.
    I needs to spend some time learning much more or understanding more.
    Thanks for wonderful information I was looking for this information for my mission.

  21. We absolutely love your blog and find almost all of your post’s to be exactly I’m looking for.
    Would you offer guest writers to write content for yourself?
    I wouldn’t miind writing a post or elaborating on a lot
    of the subjects you write regarding here. Again, awesome web
    log!

    1. Anyone can comment, and if it is not spam, it will be posted. I love to see comments, but I do not have guest bloggers/writers. This blog is the story of my family. That said, I could see allowing a guest MS blogger or foster care/adoption blogger as those experts have “skin in the game” too in terms of topics I think/write about frequently.

  22. My partner and I stumbled over here coming from a different website
    and thought I might as well check things out. I like what I
    see so i am just following you. Look forward to checking out your web page again.

  23. Greetings from Ohio! I’m bored at work so I decided to check out your blog on my iphone during lunch break.

    I love the info you provide here and can’t wait to take a look when I get home.
    I’m amazed at how quick your blog loaded on my cell phone ..
    I’m not even using WIFI, just 3G .. Anyways, good site!

    My blog :: news update (Adeline)

    1. Thank you. It is odd because so much spam says it runs either slow or fast. The best is when I hear both from the same email address.

  24. I’m impressed, I should say. Definitely rarely do I encounter a blog that’s both educative and entertaining, and let me tell you, you’ve got hit the nail on the head. Your notion is outstanding; the problem is one thing that not enough individuals are speaking intelligently about. I’m really happy that I stumbled across this in my search for some thing relating to this.

    1. Thanks for the comments. I saw a few of your replies to this post. Sorry, I do not always approve comments unless the links pass my web filters, so it takes me a while to get around to reviewing them all.

  25. Have you ever thought about writing an e-book or guest authoring on other sites?
    I have a blog centered on the same ideas you discuss and would really like to have you share some stories/information. I know my
    audience would value your work. If you are even remotely interested, feel free to send me an e-mail.

    1. ALS is a frightening disease. My favorite MS website is patientslikeme.com which was started by a guy whose brother died from ALS. Meeting him and seeing his efforts to improve research methods by recentering them around the patients’ experiences and outcomes was inspiring.

      As for writing a book, I am afraid I am too all over the place in subject matter to bring it all together in a single story. I still think about it from time to time, but the truth is I enjoy writing about our lives and what happens weekly too much to put that effort aside for all the time which would be needed to organize/edit a book. Thanks for the compliment to think I could write on that scale.

    1. You are welcome. All of my replies come from my email address, thelifewelllived@gmail.com, and I try to reply back to non spam emails as time permits. I also try to reply back to comments on here which seem more than sales pitches or spam.

  26. Hmm it appears like your site ate my first comment (it was super long) so I guess
    I’ll just sum it up what I submitted and say, I’m thoroughly enjoying your blog.
    I too am an aspiring blog writer but I’m still
    new to everything. Do you have any helpful hints for beginner blog writers?
    I’d genuinely appreciate it.

    Also visit my homepage: snoring pillow (Cristina)

    1. Sorry if your first post didn’t make it through. My spam filters sometimes get a bit off kilter. As for advice, I would just recommend writing about what you know and live. Over time, you can become an expert. A person spending 30 minutes a day for 3 years reading about most subjects will be knowledgeable. In 5 years they are an expert. Just write about what you know and never assume you know it all. Keep looking and sharing while accepting feedback.

  27. Hi there! This blog post couldn’t be written much better!
    Reading through this post reminds me of my previous roommate!

    He always kept talking about this. I most certainly will forward this information to him.
    Pretty sure he will have a good read. I appreciate you for sharing!

  28. Having read this I thought it was very enlightening. I appreciate you finding the time and energy
    to put this article together. I once again find myself personally spending a lot of
    time both reading and posting comments. But so what, it was still worthwhile!

    Here is my web page … Sleep Cycle

  29. I won’t be able to thank you more than enough for the blogposts on your site. I know you add a lot of time and effort into these and truly hope you know how deeply I appreciate it. I hope I could do precisely the same for someone else sometime.

  30. It’s a pity you don’t have a donate button! I’d most certainly donate to this outstanding blog! I guess for now i’ll settle for book-marking and adding your RSS feed to my Google account. I look forward to new updates and will talk about this site with my Facebook group. Talk soon!

    1. Thanks.
      As I was looking at the page linked to your post, I started thinking of Simon Schama’s

      One part of the book talked about Siera Leone’s second British colony there being the first place with women’s suffrage. Not many people think of anywhere in Africa leading the charge for women’s rights.

  31. Wow, superb blog layout! How long have you been blogging for?

    you made blogging look easy. The overall look of your website is wonderful, let
    alone thee content!

    1. I have been blogging off and on for roughly 7 years, but in the past couple of years, I have been trying to write something weekly. It is as much a thinking exercise as a catharsis forcing me to look at what is going on in our life on any given week. I write mostly for myself, but I love thinking what I write might be interesting to others. Still, my expectations are low because I rarely have time to seriously edit as I should if I were to write for others. It’s just a fun, needed exercise.

  32. Wow, wonderful weblog layout! How lengthy have you been running a blog for?
    you make running a blog glance easy. The overall look of your site is wonderful, let alone the content material!

    Also visit my web site :: optimum 9200

    1. Thanks for the comment. I have blogged off and on for years, but roughly 2 years ago, I picked it up again and have tried to post regularly.

  33. Interesting blog! Is your theme custom made or did you download it from
    somewhere? A design like yours with a few simple
    tweeks would really make my blog jump out. Please let me know where you got
    your theme. Cheers

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Our Family's Stories of Growing Up

%d bloggers like this: