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The power of chocolate chip cookies!

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  Giving a post like this a Title isn’t easy.  I decided not to start with a title and move to the body of the writing and then I will decide what Title will work. This weekend sucked!!!!  I struggled a lot with emotions, memories and my thoughts got the best of me at times.  I pushed through and was honest with my girls about how I was feeling and they are so kind to me with extra hugs and chats.  I’m so glad they are here!!  I need the distraction of chats.  Chandler is so awesome at chatting - I’ve definitely met my match in the gift of gab department and I just love his honest approach - most of the time.  Haha. He makes my heart happy and is so willing to put his emotions out there!  If he ever reads this, thank you for choosing my girl - I love that you had to chase her love down like I did Jeans - I wish you as many amazing years together!! It makes you really cherish them! Some of the details of this disease I choose not to share here...
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Looks are NOT everything and Makeup covers a multitude of _________ :)

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I have to finish this bookwork for taxes.   I now need to secure insurance for Jean and me...again...long story. I have sessions to edit. I need to clean and vacuum the house again. My laundry is waiting....SQUIRREL!  Need to update the peeps! He's doing pretty good!  Driving, yes. My chauffer mostly but he does venture to Hannaford, Home Depot, Dunkin Donuts (remember everyday at 8am), Aroma's and other local jaunts for a list of items.  Its funny to write that...another ah-ha moment!  Marleigh's graduation party last June.  Jean was wandering aimlessly most of the morning as the rest of us scurried around prepping.  I asked him to prepare the drinks in a cooler, get ice and a few cases of soda.  He wandered and I was fuming! One hour before the party I asked him when he planned to get the ice and drinks...he looked at me wondering.  His reply (a cover-up) was I need a list!  I told him that Marleigh had texted it to him..."oh, I d...
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Recap the last few weeks...

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I don't re-read my previous blog posts so I apologize if I'm ever repeating myself.  I talk to lots of folks who ask how we are doing and I forget who I told what so just scan with your eyes.....blah blah blah! These last few weeks have been about the same for Jean.  I notice he repeats his questions more...and gosh he really gets into the headlines!   You need news info, he's probably your guy because he gets excited over it all and sitting here a good part of the day watching TV he's well informed!  His routine is so grounded its comical.  Wanna run into him?  Go to Lyman Dunkin Donuts around 8:00am....or Alfred Aroma Joes in the 2:00 hour!  He loves little errands and just getting out for drives (he is usually running my errands or chasing down a marketplace find for me!)  I feel so grateful he's so with it!   Last week he had a pulmonology workup at the hospital.  I told him several times it was a longer appointment but he ...
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All Good here!

I’ve been silent - because I’ve been sick and now I’m officially silent because I have no voice!  This cold or flu whatever it is just hanging on makes me crazy!  Today I feel more normal - except the voice and the cough still lingers.  Jean as avoided it so far - tells me he doesn’t get sick so he won’t catch it! Where’s that palm to face emoji when I need it!  He’s actually doing so great!  He’s finding things to keep himself busy - I mean, I’m finding things to keep him busy.  It’s so strange this place we are in. He’s always had an extensive to-do list of his own - no matter the weather outside.  He always kept the garage cleaned and somewhat tidy but now he doesn’t see it or feel the need to tend to any of it.  He did fold my laundry for me - always grateful for the help!!  But it’s strange to watch your person change.  I’m so glad he’s kind and gentle I have seen some stories I hope I never have to experience.   Last week he b...
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Love my teams!

2/5/24 Jean woke me at 1am…he couldn’t sleep.  I could tell he was stressed - I’m sure worried he will fall back into that hell hole again.  He asked if  he should take a gummy (THC) and I immediately replied yes!  He used to take a half and now he doesn’t waste his time - the guy slept until just after 7am.  I’m truly so happy to see him sleep!   Yesterday we saw cardiology.  Along with his FTD/ALS he was diagnosed with HCM (hypertrophic cardiomyopathy) in that first hospital visit in October.  Lots of younger athletes die from this - the valve in the heart is a bit longer than normal and when the blood flow is fast the valve blocks the flow so they medicate him to slow his blood rate allowing the valve to perform as it should.  Doc was happy to see how well Jean is doing.  The last visit he was in his sick phase.  That carbon dioxide was creeping into his system.  He does want to send Jean for a CT scan to be sure no damage w...
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The daily around here.

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Thanks everyone who took the time to read my posts.  I’m happy you’re here and grateful you want to know what’s up with my guy and our family.   When Jean was in the hospital I ordered a bed - it’s like a hospital bed but aesthetically pleasing 😜 He needed to be able to raise the upper body slightly and pillows weren’t cutting it.  I didn’t hesitate when my friend Robyn shared that she’d done all the research and this was the best one for the money.  I have NO regrets!!  This thing is perfect!  I loved my old sleep number bed so much I was struggling to change but elevating the head for sitting up blogging, finding inspiration and watching reels is a game changer...oh and Jean can breathe and sleep next to me again!  Head up, feet up, little massage…Jean doesn’t like that part - weirdo!  Says it bugs him! It’s ok I just use it when he’s not in bed.  I fell asleep writing this!   First of all, I haven't blogged in years, let alone f...
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Things are looking up!

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I got a great night of sleep.  Made my way to the hospital much later than the day before as the hospital does a briefing at 7am and they prefer to have the halls quiet during that hour.  I respect that.  The staff there was incredible to us! They were compassionate and informative.  Jean was already awake and looked so great!  Still tubed up but nurses said they were hoping to take it out and see how he responds.  They seemed confident and that scary feeling of two options, neither of which were ideal, didn’t seem to play into things as they did just 30 hours before.   I missed the untubing and walked in on him coughing and wiping his mouth.  The nurses were impressed with him, not only how he handled this but everything leading to it!  Many who had attended to him over the past few days came in to check on him, amazed he was alert and without a tube!  His voice was so funny when they removed it.  Branden was with me and we laughed...
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