Danielle Miraglia is hosting a Virtual Zoom Concert Benefit for us live this Friday!! Danielle is so special to us! She played at my graduation party, and years later at our wedding. We have loved supporting her over the years and are very grateful for this event.[...]

We officially have Rich’s first set of electric wheels in the house! We got a lightweight power chair that I am able to fold and lift in and out of the car. This will allow for more fun family trips and a lot of conservation of energy when traveling to doctor’s appointments and walking in and out of  their offices. This chair will be vital in our lovely New England climate and upcoming weather conditions. Rich’s brother Joe helped me research the right chair for us and I am very happy with what we chose. We went with the Fold & Go MagShock. The frame is made out of the same material as a bike frame. Rich’s first words when he saw it were that it reminded him of his favorite bike, which he got in April of 2018. He was lucky to find Tri-City Bicycles in Rochester, NH, near my parents cottage. The owner Mark was absolutely wonderful in getting Rich set up and rolling. They even took a few bike rides together, along with my dad through some intense NH woods![...]

Radicava is an infused medication. It is given on a specific cycle, as follows. Ten, 1-hour long infusions in a 14-day period, followed by 14 days off, repeating over and over and over and over and over…forever… this is one of the 2 FDA approved drugs for ALS. Studies from Japan show that this drug *can* slow progression by 30%...Rich started Radicava in April of 2019. This means that from April to August he spent 50+ days with an IV in his arm…for these 4 months a nurse would come to our home 3-5 times in our 14 day infusion period to put in new IVs… each time was a struggle…Rich’s arms looked so sore, so many pokes, so many bruises. This time of my life was very difficult. I was in my fourth trimester, meaning I was healing from just having given birth to our precious daughter. Never did I EVER imagine that my time on maternity leave (on top of caring for a newborn daughter and almost-two-year-old son in a new house) would be spent letting nurses in and out of our house and infusing my husband day after day with IV medications. FINALLY in August, he was able to get a port placed. Following his port placement I was trained to access his port, and from then on we were independent of the nurse visits, but not of the IV pole and infusions. [...]

Our construction project is moving forward! It is now a reality, rather than just a thought in my head. Our amazing contractor, Greg, from Out of the Woods Construction was here a few times this week. On one of his visits he was accompanied by his draftsman and by Suzanne Koller, a local Bedford Realtor. Suzanne is amazing–she has gigantic plans to help us! I am very excited to be working with her (more details to come.) Another visit of Greg’s was spent measuring grade and pitch from our front door down to our driveway. This is to create a safe exit and entrance for Rich with a ramp leading to the driveway. A ramp will ensure smooth transfers in and out of the house for trips to the backyard or garden, trips to the zoo and of course to our frequent doctors’ appointments.[...]

I have been switching up the topics of my posts and jumping timelines as we go, writing about the current events we’re living through, mixed up with the past events we have experienced. I try to balance the heaviness of each post as well so that I don’t get so tired of writing about the sad and bad. I have one last heavy one to share in this little cycle. [...]

Thank you to everyone who has donated so far! We had our virtual cooking fundraiser event tonight and it went so well. We all cooked along, as Vivian Chang taught us how to make vegetable lettuce wraps and chicken teriyaki bento boxes. The food came out amazing. I want to give a huge shout out to the Bedford Family Connection for hosting this event! We hope to do more events in the future. If you have ideas, let me know! [...]

February 5th, 2019, is the day we got the official diagnosis.

Being diagnosed with ALS is confusing.[...]

Rich and I started watching movie marathons at the beginning of our COVID quarantining. It is our little “date night”. We sit together on the couch and *try* to unplug from our phones, to just hang out and watch a movie together. It is a special time where we both feel happy and at peace. We get the kids into bed, wrap up our chores and get comfy on our big couch. Our dog Maple occasionally joins in too, but she is a bit of a scaredy-pup so she runs off to find another place to sleep when there is too much action on the television![...]

Rich’s disease has continued to progress, we have seen a few spikes and we have seen a few plateaus. Overall things have been steady and we know we are not within the "2-5 year life expectancy" statistic that is associated with ALS. We will soon be embarking on a major home renovation to make all spaces safe and accessible for a wheelchair. This will allow for a massive increase in quality of life for all of us. Rich's safety in our home is extremely important to me and his ability to do anything and everything with our kids is absolutely vital. [...]

In the midst of the craziness around me, I am happy. Albeit I have moments of extreme stress, but yes, the joy is here through it all. I practice staying present and work towards seeing the love in all the small moments each day.[...]