In my dreams, this Sunday:

I would sleep in and wake up to the smell of bacon being cooked by Rich and my dad, along with the smell of French vanilla keurig coffee (moms favorite). I’d hear them in the kitchen, my mom laughing and telling them how she wants her bacon cooked. The kids would run in to wake me up, Rich would walk in with a cup of tea. I’d slowly drink up my tea while watching the food network. I’d eventually come out and we would all sit down together around the table. Me, Rich, my mom and dad, the kids. This is how it was supposed to be. This is why we built an in-law apartment, so we could all be together.[...]

I just wanted to make a quick post to thank the amazing crew of Puglielli Landscape and Design! They have been plowing our driveway and shoveling the ramp and walkways every storm this winter, without me even asking! They have done lawn mowing as well as Spring and Fall clean ups at no cost without even a mention. They are an incredibly kind and generous Bedford family! If you are local and looking for landscaping, plowing or yard work, definitely reach out to them! [...]

Thank you for all of the love and support on my most recent posts and for my birthday love! Rich and I got to escape for a night in Salem, MA at the Hawthorne Hotel. It was our first time away since August 2020 when M was just 1.5! She is quickly approaching 4 and I cannot believe how fast time flies.[...]

These photos can really speak for themselves, but I will add a little commentary.

These images are physical examples of accessibility being an afterthought, but there is so much more. So much unseen and unspoken. It is searching on a website of a restaurant, event venue, hotel, etc. for accessibility information to find…nothing. Then, the added step of emailing, calling, and waiting. Waiting for a response as to whether or not we can even access the building. Will we be met with disappointment or excitement? What does accessibility mean to them? Do they offer the bare minimum for appearances or is the location truly accessible? Will there be parking, will there be a sidewalk, will there be a bathroom, will someone let us know if the elevator is broken, will accessible seat locations cost more (like at TD Garden, where the average accessible ticket to the Bruins game was 46% more expensive than a standard ticket)? Before we go anywhere, I have to calculate all of these things. I have to consider the safety of each place as to whether or not I can manage my attention between caring for my husband and caring for my children. I carry myself with low expectations, knowing that there will be roadblocks.[...]

My reality at 30- husband with ALS edition

My reality at 30 is always being the one to drive, rarely a passenger. Making all the phone calls, fighting the insurance battles, fighting for disability benefits and for accessibility. Fighting for our family to stay afloat. Always being the one who has to carry in the groceries, all of the bags and do all of the packing. My reality is wiping every butt in the house, dressing, bathing and brushing everyone’s teeth. Cooking all of the meals, making sure everyone is fed, by mouth or otherwise (thank goodness I am a nurse). Do I have everyone’s water bottles? The right kind of straw? The right supplies in case of an emergency?[...]

We are living our lives on a shortened timeline. It is unknown how short, but research says 3-5 years on average. Today is the 4 year anniversary of his diagnosis. 4 years since his formal diagnosis, but really over 5.5 years since symptoms started. The end of 2022 was full of illness for the whole family, including one ambulance ride for Rich, and lots in between. Luckily, there were moments of reprieve during the holidays and we had a lovely time together as a family. We were thankful to receive so much support this holiday season from a very special friend whom we met last year through CCALS, Kelliann, along with her family and friends, and also from HARK ALS.[...]

I used to take the days for granted when I would come home to a freshly cooked meal made by my husband. The first thing I remember him making for me were the most delicious crab cakes. Over the years, cooking was our love language. From homemade focaccia to boxed Mac and cheese, from braised verde pork to frozen pizza, and everything in between. Time and time again we’d cook for each other and lap up each other's compliments like the sauce in a good chicken marsala. We would go out to eat and critique each part of our meal and declare one a winner of the best dish; he was often the winner. We’d talk about how we would make it better, as if we both had some kind of formal training, like a restaurant chef. [...]

As always, we are out here living life one day at a time.

Sometimes one day feels like too much, so I go hour to hour and in the hardest of times, minute to minute. We have dealt with colds and various other illnesses, complete with scary high fevers, but we have made it through, and without Covid to boot! We are still very cautious, but I do work in a high exposure environment so I feel grateful we have made it this far. Thank you to vaccines and high quality masks! Our biggest challenge right now is Rich’s speech quality declining and the many new challenges that brings.[...]

Hey all! My updates have been few and far between because ALS is a beast and never stops, neither do growing kiddos, and apparently neither does this pandemic! [...]

Hello to all! 

Since my last post, many people have very kindly reached out to ask how they can help us. It is all just so much to explain that usually I don’t know what to say or where to start. Today, this is how to help: a large upcoming expense for us is the purchase of a split adjustable bed along with new mattress' and sheets so that Rich can be elevated to help his breathing, but so that I can stay in bed with him rather than having to get two separate beds. This is an expensive item and it is needed sooner rather than later. We are dealing with our first big cold and our kids having RSV, and Rich, unsurprisingly, has been hit the hardest. We are currently in the thick of it and I wish we could get the bed tomorrow, but the best I can do is order it and await delivery. The bed and accessories are going to cost $5,000-$7,000. I have also been looking into getting a portable ramp (still in research phase) to use when visiting relatives or other locations with 2-3 steps at the entrance so that we have a tinsy bit more freedom to travel if Rich is up for it…or if I’m up for it for that matter because it is A LOT of work to travel with kids, let alone all the newly added medical supplies/ equipment, food, etc. If you are able, a donation to our GoFundMe would be incredibly helpful. If you prefer, you could also Venmo me at Leah-Devereaux.[...]