What’s On your bucket list?

[Mrs Tiggywinkle]

I was tentatively diagnosed a few years ago with vascular EDS, but never pursued a whole lot of genetics past what was needed to diagnosis DS6 with mosaic DS.  Recently my new primary really pushed me to see a geneticist for myself and I did.

Well, the report is in and I definitely have the mutation in the COL3A1 gene which is pathogenic for vEDS. Combined with everything else I 100% have vEDS. 

The current life expectancy is 49–though since we know to watch for aneurysms I probably have much longer than that. Even so, I’m 40 and using this as a thought experiment.

If you were my age and diagnosed with something that has a life expectancy of only 9 more years, what would you put on your bucket list?

(this is just a thought experiment—the average life expectancy includes a lot of people who didn’t know they had vEDS and never got the aneurysm screenings until it was too late, but I’m interested to hear what’s on other people’s bucket list

Also, it’s really just confirmation, I’ve had the diagnosis for five or six years, just didn’t pursue genetic confirmation till now.  So I’m not shocked or dismayed; i worked through a lot of those feelings years ago. And I’m not actually expecting to have a shortened life span with the aneurysm screenings available now.  But who knows what life will bring and it’s making me think about a lot of things.)

Edited January 24, 2022 by Mrs Tiggywinkle

[Faith-manor]

For me, I prioritize travel and new experience because if really means a lot to me. I desperately want to go to Denmark with our adult kids. I have never seen Yosemite, the Grand Canyon, etc. so those would be big bucket list items. I haven't seen my sister in four years, so a trip to France would be happening as well.

[gardenmom5]

My sister has EDS - not sure which type. (classical? hypermobile?)  As a teen, she loved her double-jointed fingers.

are there places you've really wanted to go?  Covid has really put a damper on travel.

Things you've really wanted to learn?

I'd also write up a life-story for your kids and future grandchildren.

[alysee]

One of things I really want to do is create a family cookbook. The recipes that have been passed down from my great great grandparents all the way down to the recipes that I make. I would love to add family photos and stories. 

I would love to see the east coast of Canada and to visit Costa Rica. 

[Spryte]

I don’t have a bucket list. I don’t make NY resolutions, either, but I would have ideas about what I’d want to do.

My focus would be on time with DH and kids. Just hanging out together, games, cooking, travel, making fun memories. It wouldn’t have to be anything super special, but yes, travel would be on the list. And some camping. I have some places that I love, love, love and would like to share with my kids.

 

And I’d want to finish up a few things, right away, so they didn’t weigh on me later.

[Pam in CT]

(( @Mrs Tiggywinkle )). That is a lot to process.

 

There's a lot to be said for getting the house in order, and cherishing ordinary small moments.

There's also something to be said for figuring a short list of Big Things.

 

Mine are experiences, rather than accomplishments...

 

Bucket List

I want to watch sea turtles hatch and scurry to the sea.

I want to see Northern Lights.

I want to see the Mexican long-tailed bats fly out from the Congress Bridge in Austin.

I want to see the wildebeest migration.

 

I've already seen the monarch butterflies wake up from their once-every-three-generational winter sleep in highland Mexico; and night-dove during the once-a-year coral spawning in the Philippines. 

The sea turtles and bats I can get to on a 4 hour domestic flight; that seems eminently achievable.  Northern Lights and wildebeests are a good bit harder.

[Elizabeth86]

Nothing solid, but when dh retires (from his current job in 9 years) we are going to attempt hiking the Appalachian trail. I want to see National Parks out west, Alaska, Montana, Wyoming those sorts of places. That’s really it. 
 

I tried to add yesterday, but I didn’t get a chance. I’m so sorry you are having to think about this. What are your interests and hobbies? What’s on your list so far? Hiking is about the only goals I have, so if that’s not something you can do or like to do my list is useless. You have such a good outlook on this. I pray you live a long and healthy life.

Edited January 25, 2022 by Elizabeth86

[Katy]

I’m so sorry.  That must be so hard.

I’d write family traditions and recipes down. Finish the baby books. Make sure all my kids feel loved and valued. Think about the values and practical life tips I want to teach them, at what ages, and write them letters or make videos for the corresponding birthdays and occasions like first heartbreak, marriage, first baby. Maybe buy or make small presents for all of the things. 

Give the kids stability by putting them in school and checking in spiritually. Research all the services DH will need without me and think about getting them established now. 

I’d travel, and have more family game nights.  Make good memories for the kids. Set aside favorite belongings for the kids. 

Swedish death clean.  Write specific instructions on what to do with the rest of it so no one confuses attachment to my stuff with grief. Update my will. Make sure DH promises to have any future brides sign a prenup so our kids get something when he dies. 

[wintermom]

Well that just sucks. I'm so sorry @Mrs Tiggywinkle

My bucket list is split between "What I always dreamed of doing" and "What is actually practical to do given my age and current circumstances." There may not be a lot of overlap between the two lists. It all depends on what's happening in my life.

• Visit New Zealand and Australia
• Visit a tropical island (e.g., South Seas, Carribean, Hawaii, etc.)
• Climb a mountain (Not necessarily using ropes and harnesses. A mountain I can hike or scramble without specialized gear works)
• Surf (standing, if I can, otherwise body surfing is ok)
• Drive around almost any European country with my dh, explore the country-side, try the food, meet some local people
• Live beside water (an extended vacation would work)
• Ski trip in the mountains with dh and the dc 

Edited January 24, 2022 by wintermom

[Faith-manor]

And one very practical thing: if you have a special drawer or a box of tEa items, designate a good friend to retrieve it asap when you pass so if dh has someone helping clean out your things, there isn't an awkward silence with everyone standing around in the bedroom, maybe the kids are there, and well, you can imagine.

It happened with a friend. Her very prim and proper, uber conservative mother found it while helping her husband, and well, it was an uncomfortable moment followed by mother in law giving him the evil eye for a few days.

Since none of us really knows when such a thing shall happen, I always recommend every woman have a contingency plan for that situation

[Pawz4me]

I don't think I've ever had anything remotely resembling a bucket list, except that I'd want to leave my affairs in as good an order as possible, make things as simple as possible for my survivors. I'm a simple person who enjoys the wonderfulness of the ordinary, so I've never felt that doing X or traveling to Y would make my life any better. FWIW, DH always thought he had many things on his list and many places he wanted to go. But after he was diagnosed with cancer (a type with single digit five year survival odds, although he's close to that milestone and still doing okay) he realized that the things he thought he wanted aren't important at all.

Hugs.

[Toocrazy!!]

There are places I’d like to go, of course. I love to travel. But what I’d like to accomplish, and what I’m working on now, is making my everyday life better quality. In my case, that’s my job. It doesn’t make me happy, but it offers lots of benefits (monetary, but mostly otherwise) I couldn’t get with a different one. So I’d have to balance that so I’m not dreading so many days. I’d like each day to offer more, not just save up for special occasions. 
And even as a really crazy introvert, I realize all my best memories are with people. So I’d do my best to travel with friends and family and spend more time with people I love and people I enjoy. 
I’ve been thinking about this a lot lately- not because of any news, but I think when you do think this way it does drill down to what’s most important to you. 
I would also do the Swedish death cleanse. We have way too much stuff and one child. It would be a huge burden on him to deal with that. 

[SKL]

I think I'd write a sitcom about my life to be published posthumously.

[Mrs Tiggywinkle]

35 minutes ago, Faith-manor said:

And one very practical thing: if you have a special drawer or a box of tEa items, designate a good friend to retrieve it asap when you pass so if dh has someone helping clean out your things, there isn't an awkward silence with everyone standing around in the bedroom, maybe the kids are there, and well, you can imagine.

It happened with a friend. Her very prim and proper, uber conservative mother found it while helping her husband, and well, it was an uncomfortable moment followed by mother in law giving him the evil eye for a few days.

Since none of us really knows when such a thing shall happen, I always recommend every woman have a contingency plan for that situation

Funny story.

The year we got married my MIL and SIL started a housecleaning business together. As a surprise, DH paid them to clean and organize our new apartment while we were gone on a long weekend. I hate organizing and am not the greatest housekeeper, so it was a very kind gesture on his part.

i came back to a sparkling, well organized apartment. Everything was newly and neatly organized. Even the, ahem, rather extensive and maybe a little kinky tEA collection drawer in my dresser.  
I couldn’t look my prim, proper, rarely even watches a PG movie Baptist MIL in the eye for weeks. 

[Faith-manor]

Just now, Mrs Tiggywinkle said:

Funny story.

The year we got married my MIL and SIL started a housecleaning business together. As a surprise, DH paid them to clean and organize our new apartment while we were gone on a long weekend. I hate organizing and am not the greatest housekeeper, so it was a very kind gesture on his part.

i came back to a sparkling, well organized apartment. Everything was newly and neatly organized. Even the, ahem, rather extensive and maybe a little kinky tEA collection drawer in my dresser.  
I couldn’t look my prim, proper, rarely even watches a PG movie Baptist MIL in the eye for weeks. 

😂😂😂😂😂😂epic!!!

My friend, Cordelia, knows where to go to fetch for me if we are in Michigan. If we are in Bama when it happens, thankfully my relationship with DD is so open, that without blinking an eyelash she will retrieve before any of the other relatives or god forbid my mom, shows up. LOL, I can only imagine my sons' faces if one of them found it. Eldest boy, always on the look out for family photos, would absolutely go under the bed and start rummaging through boxes. 😱 

[MEmama]

nm 

Edited January 25, 2022 by MEmama

[Carol in Cal.]

Back to Bora Bora

Peru

Denmark

Northern Germany

Canadian Rockies

Hike higher in the Sierras

Practice and watch effects of generosity

Establish beauty and hospitality at higher levels in my life

Encourage and love on my younger family members

Serve God as He sends life to me and sends me ways to do that

Love God and others more every day

ETA:  I want to live in such a way that I get more healthy and strong and have a relatively short time of serious frailty, to the best of my ability, and in such a way that ‘Well done, thou good and faithful servant’ is a possible result.

Edited January 24, 2022 by Carol in Cal.

[prairiewindmomma]

One of the harder things about having to make a bucket list when you still have minor kids at home is dealing with the practicalities of childcare, finances, etc. while trying to fulfill the list.

I have a few nice idea travel ideas based out of Europe, but it’s not the most important thing for me right now. 
 

When things got scary a couple of years ago, I spent a lot of time and effort on practical affairs, making digital photo albums, and writing down family stories and history. 

[BlsdMama]

If I’m you, I’m calculating cost of disease and what your abilities look like in the next few years to decide what’s doable.

 Average life expectancy of ALS is three years after first symptom. I’m five years past that. Abilities wane quickly. Cost is high - we’ve spent over $100k out of pocket for directly related expenses in the past two to three years. My bucket list has to be narrowed by what could actually be done, kwim?

 We returned to Oregon as a couple, saw friends we missed. I wanted to finish my degree. I wrote letters to kids, bought each a Bible and annotated some areas. I take a lot more pictures. I hope to write a book yet. Mostly I am living life as best as I can and trying to stave off bitterness  or broken heart from creeping in. I’m not a big fan of my body or this disease these days. 

[Faith-manor]

2 minutes ago, prairiewindmomma said:

One of the harder things about having to make a bucket list when you still have minor kids at home is dealing with the practicalities of childcare, finances, etc. while trying to fulfill the list.

I have a few nice idea travel ideas based out of Europe, but it’s not the most important thing for me right now. 
 

When things got scary a couple of years ago, I spent a lot of time and effort on practical affairs, making digital photo albums, and writing down family stories and history. 

That is what I did during my last pregnancy when they told me I was not going to make it. I wrote letters to all the kids for their 18th birthdays, one to Dd for when she started her period, one to the new baby specifically in case he did survive and I did not, and then wrote down a lot of stories while organizing all the photos. 

[kbutton]

2 hours ago, Mrs Tiggywinkle said:

(this is just a thought experiment—the average life expectancy includes a lot of people who didn’t know they had vEDS and never got the aneurysm screenings until it was too late, but I’m interested to hear what’s on other people’s bucket list

Also, it’s really just confirmation, I’ve had the diagnosis for five or six years, just didn’t pursue genetic confirmation till now.  So I’m not shocked or dismayed; i worked through a lot of those feelings years ago. And I’m not actually expecting to have a shortened life span with the aneurysm screenings available now.  But who knows what life will bring and it’s making me think about a lot of things.)

I want to encourage you that it's also an average still skewed toward the worst presentations/outcomes. The more data they gather, the more they find "mild" cases and get a fuller picture. 

It might be worth adding a Marfan Foundation annual conference to your bucket list. It's where I learned the fact I just shared above, and our family's experience at the conference was one of the most positive things we've ever done. It's a remarkable group of people, and the researchers that show up to present information clearly have made this their life's work and made the people with Marfan, vEDS, etc. part of their own extended families. It's beautiful. They are also very accepting of neuro-divergent people too we've found--people with CTDs have learning issues, ASD, etc. At one semi-local event, we even met a family whose connective tissue kids also have ASD and blindness, and they had their BCBAs along, lol! 

I think everyone going to medical school should be provided with the means to attend and be required to attend at least one conference geared toward the rare disease community with the express intent of learning how to have the kind of passion these researchers show, including how to treat patients like peers, learning from them, etc. It would make a huge difference. While most doctors will not specialize in this way, it would raise awareness while also elevating patient experience. 

1 hour ago, Pawz4me said:

I don't think I've ever had anything remotely resembling a bucket list, except that I'd want to leave my affairs in as good an order as possible, make things as simple as possible for my survivors. I'm a simple person who enjoys the wonderfulness of the ordinary

Me too, though I would like to have at least one long, serious travel trip with my family to see something not at all like where we live. Serious doesn't necessarily mean international (I'm not adventurous), but something like Hawaii, National Parks, or Alaska/Canada would be cool. If I did travel internationally, I think I would like to see Japan. 

I would also like to leave more pictures and have them more organized (not the worst so far, not the best either). 

I also have an interest in documenting and researching more family history. I have some great starting points with various parts of the family--some relatives, including some very distant ones and some very close ones, have left various cool records. My parents live in a good place for me to dig while I'm visiting. One thing that I think would be cool is to make a "driving tour" of family history if I could research it well enough, or maybe even several. One could be like a walking cemetery tour that helps people know a bit about who is buried in the same place as various grandparents (in one case, someone from nearly every generation in buried in the same place since our ancestors arrived in the US in the late 1800s from Europe). Another could be a driving tour of various places our ancestors lived and what property they owned. I also have an ancestor who was in a prominent regiment in the Civil War, and I'd like to know more about that to record. It would be fun to sort of make a DIY Finding Your Roots style book for posterity. I'd like to include important medical history when available too--genetics is changing so much, and we definitely have things that are being passed on real time that people need to know about.

 

[elegantlion]

My bucket list is also dictated by money and ability. 

Visit several national parks in the western US

travel to England to see certain medieval sites 

If money allowed, I'd take ds to Japan

Also if money allowed, I'd try to finish my 50 state visit. I'm 14 states short.

I would love to take ds and SO along with me. 

Finish writing a book, I've started several fiction stories 

Sort through all my stuff and make a will 

spend time with family and friends

Learn Norwegian, Old English, & Old Norse (working on all of these)

Read every English translation of The Iliad

Wear garb on a regular basis for the heck of it. Yes, I'll go to Aldi in my Viking or Roman garb. SO will wear his too. 

Take adult ballet classes

Learn Tai Chi

[kirstenhill]

My bucket list is mostly all travel-related.  Though I don't keep an actual "list" -- more like, I have a good idea of places I definitely want to see in my lifetime.  I have been fortunate to travel a lot already in my lifetime and I have seen many places on my list already! Some are kind of small (I just did one this weekend!), and some are big (I really want to see Pompeii and the Parthenon).  

[Selkie]

I don't have a bucket list with trips or anything like that. My list is pretty short and simple: Keep solid relationships with my loved ones and do as much work as I can in my lifetime for animal welfare. I work on both of those every day.

Dh and I did our Swedish Death Cleaning as soon as our youngest kid flew the coop. We wanted to get it done while we were still (relatively) young.

[Harriet Vane]

I've always wanted to live Somewhere Else for a while. I dreamed of studying abroad when I was in college, but I couldn't see my way towards that financially. I've always regretted it. Now my dreams are at odds, because I want to be near my adult kids AND I want to live Somewhere Else. Along with that, I would like to immerse in foreign language learning, so perhaps the two could mix. Perhaps live in Costa Rica for a year? Or France? Who knows. It doesn't seem likely or possible with the constraints of dh's job, but that's my dream.

[TheReader]

Mostly experiences/places I want to go. 

Washington DC

Northern Lights

White Sands at night/full moon night (we almost did this, but then it was raining/storming, so we skipped)

Back to Florence for like a week or two and see all the art we skipped b/c I didn't research before we went (and we were only there a day)

We once almost took a 14 day cruise around the tip of S America, with a stop at the Falkland Islands; we had to cancel due to a death in the (extended) family, and now I don't think they still do that exact cruise, but dang it made me really want to visit the Falklands

See the heather fields in bloom in Scotland/Ireland

And then, if these are "impending/approaching death" lists specifically, I'd write letters to the kids, make quilts for the (future) grandkids to have, gather all the photos of past quilts and print the book explaining them all, and just *be there* for all the things with all the kids. Go fishing with DH. Take more pics of the kids (and be in more pics with them). Make memories, lots and lots and lots of memories. Build the legos together, learn their video games, just....all the stuff we do now, but....more. 

[BlsdMama]

26 minutes ago, TheReader said:

. Take more pics of the kids (and be in more pics with them). Make memories, lots and lots and lots of memories. Build the legos together, learn their video games, just....all the stuff we do now, but....more. 

So much this - especially BE IN the pictures!

 As your ability to DO things wanes, it will become more important to you that you want people to remember you a certain way because who you are, disabled, really doesn’t sideline who you were/are as a person. I was an incredibly active, jump in there, work alongside, Mom. My youngest can’t remember me out of this chair and it’s only been 1-2 years IN the chair. That horrified me. This broken body is not who I am. I wish I’d taken so many pictures when I was total pooling with them, building towers, Nature walking, growing things… because looking through journals and pictures does tell people who you were. I’m sad William (currently 7) won’t have this. He’s been robbed of the experiences, but because we didn’t take a moment to take the picture, in some ways he is doubly robbed because he won’t have a clear idea of who his mom actually was. 
 

Do the thing. 
Go to the place. 
Record the moments. 

[TheReader]

5 minutes ago, BlsdMama said:

So much this - especially BE IN the pictures!

 As your ability to DO things wanes, it will become more important to you that you want people to remember you a certain way because who you are, disabled, really doesn’t sideline who you were/are as a person. I was an incredibly active, jump in there, work alongside, Mom. My youngest can’t remember me out of this chair and it’s only been 1-2 years IN the chair. That horrified me. This broken body is not who I am. I wish I’d taken so many pictures when I was total pooling with them, building towers, Nature walking, growing things… because looking through journals and pictures does tell people who you were. I’m sad William (currently 7) won’t have this. He’s been robbed of the experiences, but because we didn’t take a moment to take the picture, in some ways he is doubly robbed because he won’t have a clear idea of who his mom actually was. 
 

Do the thing. 
Go to the place. 
Record the moments. 

Hugs to you. 

My stepmom had MS, and so faced the same thing. I wish so much that my boys had more pictures of her being *her* before MS took away her ability to do so.  

[Murphy101]

Mostly travel and experiences.

Enjoying what I’ve got. 

I’d be really glad to home school so I could share the travel and experiences with kids at least some of the time and not be tethered to a school schedule.

Hopefully enjoying my marriage and friends. 

[Pam in CT]

59 minutes ago, TheReader said:

..Take more pics of the kids (and be in more pics with them). ..

SO MUCH THIS.

 

40 years from now, when I'm dead, no one will care about what shape my hair is in or whether my thighs are as taut as I'd like or what I'm wearing.  They'll just be glad to HAVE THE PICTURES.

Hard to remember that in the moment, but if I position myself into the future, I know it is true.

[Faith-manor]

Sadly, there are very few pictures of me. I have always been the one behind the camera. That is quite common for moms. So it is something to think about.