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. [...]