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

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106 thoughts on “The Life Well Lived”

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    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.

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    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)

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    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.

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    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.

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    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.

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Our Family's Stories of Growing Up

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