The ROYFAM Story

 The days will pass and its over a month before you know it.  I've had some hard days and I've had some days I feel so loved its easier to carry on but I wouldn't erase the love we had for these hard days! It's 4:51am as I write this.  I woke over an hour ago from my sleep with my brain rushing with thoughts of things I still need to do.  Its a never ending list in my brain.  Can't shut it down and really, don't want to.  It gives me a needed and wanted feeling and right now, things are just a little lonely sometimes.  My kids give me so much strength.  I have always told them with life comes death.  Didn't expect I would get more than my fair share of unexpected loss so close to my heart: my dad, my sister-in-law, my own battle with cancer and my soulmate.   I could wallow, walk around sad and depressed all the time but life means more to me now than ever....leaving me to think, did all the loss teach me anything about my own life....

 Sundays are for rest.... Today I took it slow.  I purchased some yellow flowers for the planters in the yard.  Im feeling I need the pop of yellow to pick me up, not my normal go-to.  I'm a really big fan of pink...but today yellow pansies.  I saw Allison and Tracy and chatting with them was great.  I am too social and generally happy to stay home in a ball.  I'm trying to get away from saying I'm "hanging in there" and today I said "I am so grateful for the amazing love I have been shown...almost 40 (combined) years with an amazing man, our grown children handling these last few years with more understanding and support for each other than some adults I know!  I find myself going back to my 19-year-old self and her struggles when my dad died in a plane crash and took our family by shock.  How I processed the situation then and grew to teach my children to speak of death, expect it will come and know they will be okay!  They know they h...

I've had some emotional struggles these last few days.  I was getting ready to call it a day when I noticed my girl had made a post on facebook.  Im copying her words here for those who dont have facebook.  I am so incredibly proud of these kids of mine!!  They are tough!! The past 17 months have changed our family forever. Watching my dad go through ALS and FTD was something I can’t fully put into words. What he carried, physically and emotionally, was more than most people will ever understand, but he did it with so much strength, honesty, and love. As a family, we did everything we could to support him. Being a caregiver for someone you love means wanting to do anything and everything to help and keep them. My mom carried that in every moment, and alongside my siblings and I, we stood by him through every step. But through it all, my dad knew exactly what he wanted. I was always amazed by how strong-willed and certain he was in that. My dad was always clear about ...

You can never imagine the moment...but then it happens...and then its gone.  Today I decided to clean the closet, just to keep my mind occupied.  I've been procrastinating taking care of my side and trying to take over his side for years!  I was fine with pulling his button shirts of hangers and gathering the jeans but when I opened the drawer that held his t-shirts, underwear and keepsakes, my eyes welled up.  But I refuse to wallow...we knew what was coming and we were all pissed about it too!  We were blessed with an extra 14.5 months with him and we did not waste it.  We said what we needed to say, we teased and laughed.  We aren't perfect by any means but the atmosphere here was healthy for all.   I can't believe its already been a week!  I'm sure he's walking with old friends, his parents and hopefully spending time with God.  You know, his mom wanted him to be a priest when he was young!  He attended Catholic school, was...

Today its been three days since Jean's passing.  Last Sunday, March 22, 2026 I was sitting in my chair next to him, letting him know that I was leaving for a short time but would return in time for his lunch.  The look on his face told me something had changed for him.  He said, "my lungs are worse, I feel more weakness in my arms and legs...its time to call palliative care." Months ago we put a plan in place that he would live as long as possible, until he reached his "lines in the sand" per palliative care.  Palliative care comes before hospice.  They help you navigate a more peaceful end of life process.  In the State of Maine, we have the option for MAID (Medical Aid in Dying).  Not all states offer it so after Jean expressed his sadness for his disease by trying to drown in the pond we live on last September, we all (doctors/family) took his choices serious and pursued a way he could do things his way.  We weren't sure he would qualify with t...

Headed into Christmas and not taking this one for granted, that's for sure!  Its simplified...the tree has only glitter ornaments, none of the usual ones we hang every year...I have no reason why, only that I didn't feel up for going through the boxes and I had the glitter ornaments here at the ready from a Hobby Lobby trip a month or so ago. Kids decided that since they are all "coupled" up this year, exchange names by couples..one big gift for both with $150 limit!  Sounds easy...but my gift giving ideas SUCK!  My girls are so great at it...I always hope I don't disappoint! So what's new here?  Not much I am happy to report!  Jean's progress is slow now since the bipap machine in January!   He has NO ALS/FTD medications and takes a THC gummy to help him sleep...which he does 10PM-6:30AM every single day!  His life is like clockwork.  6:30 shower, 7:00 treadmill for 20 min, sit for 10 after the walk to catch his breath (breathing is still ro...