Back at It

 This past weekend has been our most normal since Scott's cardiac event. Yesterday he and I packed up and headed to the mall to sell FlexyFriends while Robby and Timmy stayed home and out of the heat. This was the first time we have been selling together since the event, and Scott's first foray back into the public and some physical work. 

For a few hours at the mall, I forgot that we were now a cardiac family. I recognize this as a milestone because I remember how my amputation was omnipresent at the beginning. Eventually I didn't think about it during every moment of the day. Yesterday I experienced the same when I managed to 'forget' about my heart fears. I'm calling this progress!

The heat is oppressive, so we are staying inside (with the exception of Cardiac Rehab). With the heat index in excess of 110 degrees, I know that the chances of my leg staying in place are minimal. The last thing this family needs is for me to slip out of my leg, fall and get hurt. Between the captive sweat and the heat condensing socket, these temperatures make my amputee life miserable.  

Thank goodness for great a/c. Our unit at our previous home was antiquated and definitely destined for retirement. There is no way that that unit will cool our old home in this heat. We would have been at a hotel or my Mom's house if we were still living in Virginia. We weren't sure about the robustness of the unit at our current home, but I am incredibly impressed with the comfort that is being pumped into these walls. With everything else in the world going crazy, at least I can stay cool. 

Nutrition

 Oh my goodness, this summer's weather has been as miserable as our moods. Between the stagnant air, the grey skies and the constant storms, our yard has turned into an overgrown jungle brimming with bugs and other unsavory critters. It is the end of June and we still haven't had a day nice enough to try out the neighborhood pool. I suppose I shouldn't complain since parts of this state suffered severe flooding.  I know we are lucky but none of us are feeling particularly jovial. 

Yesterday while Scott was in heart rehab I attended a cardio nutrition class. Finally!  After six weeks, I finally found somebody who could provide concrete guidelines for our new diet. I felt feeling empowered with information and a diet plan that is not too far off the way that we ate preheart attack.   

Today is an 'off' day because we don't have any rehab or medical appointments. We are really hoping that the rain holds off so that Timmy and I can launch some rockets. Fingers crossed, because the odds are not in our favor. 

 

I'm Back

 The past few weeks have been difficult. I feel like my life has been turned in a snow globe of medical confusion and chaos. As the pieces start to float into place I am starting to see my way through into a different future than we envisioned, but one that is now our reality. I think I just needed time to process everything. Time to cry alone and mourn our carefree cardiac ignorant lives.  Thank you for returning to read.

Timmy has been basking in his summer vacation. Last week Tiffany took him on his own personal adventure. Dubbed "T and T Adventures," the pair went to Hershey Park, Red Robin and launched fireworks at night. Timmy's excitement and joy was positively radiant. I also must admit that I am so proud of Tiffany for coordinating her first adventure. She did an amazing job! 

Scott is settling into Cardiac Rehab. We are beginning week three and he is becoming stronger by the day. Thank you for your support and prayers.

I'll be back tomorrow!

 

Happy Birthday Robby

 Friday was a big day in our family- it was the day Robby turned 19!  I can't believe he is almost out of his teens. I could not be prouder of the man he that is emerging. Over the past month he has stepped up and helped both care of his dad and the house. Of course, he has always been and will always be a hero to Timmy.

19 years has passed since I first held him, although when I look into his eyes I still see a glint of the little pirate I used to battle with Nerf foam swords. When I think that his official childhood is over I become overwhelmed with sadness. With so much else sparking my tears, I am not going to invite this abyss. Instead, I'm choosing to focus on the amazing adventures that will unfold with my grown-up son. 

Like most holidays this year, Robby's birthday celebration was low-key. I made his requested cake (vanilla) and we took him to Texas Roadhouse for dinner. He spent the evening playing a video game with Timmy which absolutely delighted Hamlet.  

Today we start the final week of school and the first week of cardiac rehab.  Sigh.  Wish me luck with both!

 

No Starting Quite Yet

 Its seems we were a bit too enthusiastic about the start of Scott's cardiac rehabilitation. While we did attend the first appointment on Tuesday, him wearing his sneakers and ready to work out and me with my notebook in hand, eager to take notes to help him at home, nothing of import occurred. We filled out forms and watched a PowerPoint presentation about the importance of completing Cardiac Rehabilitation. We were instructed to return next Tuesday to formally begin the program. 

Disappointed that we weren't starting that day, it was difficult to keep Scott's spirits up. He is feeling deflated and useless around the house. I am acutely aware of his frustrations because, while I have never had issues with my heart, I have experienced a life-changing medical event. Thus far I have refrained from offering this reminder as support because I fear it would come off as dismissive when that is the last thing I want to do.  

Yesterday we received a phone call from the cardiac rehab informing us that our insurance has summarily denied care. Ugh! I spent the afternoon working the phone and trying to come to a resolution.  It took me nearly 3 hours but I believe everything should be ready go for next Tuesday. 

Fighting insurance enraged me. Why is healthcare always such a battle in this country? Nobody should ever look at their spouse and wonder if they are going to have the financial means to maintain their medical needs! 

Memorial Day wrap up

 Timmy did a fabulous job presenting his Science Fair project. In a room full of moon phases and bean growth, uranium glass presentation was unique and unusual. His increased comfort level speaking publicly was on full display as he confidently taught everybody and fielded questions about his glass. I am so proud of him!

On Saturday we met my Mom at a local creamery for the afternoon. It was nice to sit outside in a different location and chat face to face for awhile. I know that it is going to be awhile before I can leave Scott overnight, but it is nice to know that my Mom is always willing to drive a little further for some ice cream.

Sunday was (and always has been) Scott's special "Day of Racing." He rises early and begins his day with F1 before the flag drops at his beloved Indianapolis 500. In the evening another Nascar race finishes out the night, logging another 600 miles. I don't get it, but I have learned to understand that this marathon day of car racing is one of his favorites.  

Monday we decided to take the boys to the local Go-Cart track to break up the day. They had a blast. I have a feeling that Go-Carting will become a regular part of our summer rotation.  

Today Scott reports for orientation for Cardiac Rehabilitation. To say that he is nervous would be an understatement. While I'm excited to learn his true limits and to have him begin the process of recovery, he is scared that it will trigger another event.  (The fact that Mr. Bill called and regaled us with a story of his own cardiac rehabilitation, which did indeed trigger a second heart attack, did not help!) While I know that Scott will be safe, I know that he is scared.  Fingers crossed!

 

Science Fair

 It is a big day in our house, and for the first time in a long time it has nothing to do with health! After working and planning for weeks, today Timmy will present his science fair project. He is extraordinarily proud of his topic, Uranium Glass, because it is both unique and heavily influenced by his big brother. (On a side note, everybody should be as fortunate as Robby to be perpetually viewed as a hero by at least one person in their life.)

As soon as the science fair concludes we will be officially celebrating Memorial Day weekend. Unfortunately this year we won't be traveling to visit my mom. I haven't been able to go to the local craft fair with her for several years and I was really hoping to go this time. But Scott isn't cleared to travel and he can't be alone, so we're going to settle in for the weekend. 

Don't worry though- I have some plans.

:)

 

Still Adjusting

 Adjusting to life as a cardiac family is difficult yet, in many ways, the emotions remind me of the summer of my amputation. Scott and I were both scared, frustrated and lost in our own ways. This summer those same emotions are again rising, but it is more difficult because our kids are involved. Watching them struggle to accept and adjust to life after their Dad's heart attack has been really hard.

Robby continues to blame himself for his dad's coronary event. While he understands that his dad suffers from coronary artery disease, the timing of the heart attack remains most unfortunate. I don't think it will matter how many times I tell Robby that it was not his fault, I fear he will always harbor a little guilt. (Scott's heart attack began as he was moving Robby out of the dormitory for the summer.)

While Timmy does not assume any guilt, which is good, he seems to have trouble accepting the changes within his dad. Until Scott completes cardiac rehab, there are a lot of restrictions on activities. There could be restrictions after rehab as well, but I keep trying to push that worry can down the road. Robby and I are trying to fill the void, but it is not easy!

 I've been so lucky that my leg has cooperated throughout this ordeal. The past two days have greeted us with heavy rains and cooler air. I woke up this morning and my leg is angry and does not want to be confined in a prosthesis.  I think today will be one for the couch and crutches.

 

Birthday Recap

 My birthday was both laid back and quiet, both of which our family needed as we continue to heal from Scott's heart attack. The weather was gorgeous so I made a reservation for us to all go strawberry picking. Timmy was especially excited to return to the farm, albeit a completely different farm, to resume a familiar and comforting tradition. Witnessing his excitement to pick strawberries showed me that I need to provide more familiar experiences for him during this summer. His world has also been turned upside down and I think he is finding comfort through familiarity. 

We had a great time at the strawberry farm which looked and felt very familiar to our old family stomping grounds. I'm going to check into the prices for their CSA and playpasses. If affordable, I think may be a fantastic option for our family, especially Timmy, this summer. We are going to be rather tethered to WV and I'm trying to find local activities that will spark joy.

In the meantime, we need to get through the rest of this school year. Timmy has two weeks left and then he is officially done. After some drama about school for next year, his teachers have worked tirelessly to create their won school based upon the current technology being used. In other words, despite the fears of the school closing, Timmy's education will continue without pause. Talk about a relief!

 

 

HAPPY BIRTHDAY TO ME

 Today is my birthday.  Traditionally I love my birthday as I I aist upon being doted upon by everybody in my family.  For a single day of the year I aspire to avoid preparing dinners, lunches or breakfasts.  (Well, in an ideal world I would love to opt out entirely from all adult responsibilities, but it never really happens.)

This year the anticipation of my birthday has only brought tears.  Our family is healing and is still too traumatized from the heart attack and scared of the future to enjoy a birthday, especially mine. 

50 has not been kind to us.  I want to hide from 51.

Returning

 I am going to do my best to returning to writing on a regular basis. My life has been crazy but I realized that I need the outlet for my emotions. Thank you for sticking by me.

Scott continues to recover at home. After four stent placements and the diagnosis of another artery blocked, our family lifestyle has been overhauled. While the kids are onboard and have not complained, I must admit that I discovered that a "family healthy lifestyle" is quite laborious! I feel like I am spending hours in the kitchen each day carefully prepping each meal. I'm hoping it eases with time because it is exhausting.

As a mercy, my leg seems to be complying beautifully. I despite spending considerably more time on my legs each day, I have been able to avoid skin issues and breakdown.  Now if my emotional meltdowns were as easy to avoid.

It's hard. It's really really hard. I don't want to be a cardiac family. I want to turn back the clock 15 months to when I was happy any and felt valued. But that isn't possible, so right now I'm in survival mode.

Getting through the hours until the days are easier. We've done this type of trip before and we know we will make it to the other side. But this summer is not going to be a lot of fun.

 

Home on Cardiac Recovery

 The past week has been among one of the most difficult in my life. I am eternally  grateful that Scott is home and on the road to recovery. Our lives as cardiac families is already very sufficient, but we will figure it out.  

Although things are different, it is nice to have everybody home. Timmy finally returned home, reuniting the family under a single roof.  With the days lost in the hospital I completely forgot Mother's Day.  Thankfully my Mom surprised me with a lunch visit.

Things are hard.  I feel like I'm treading water wearing a ball gown and weights.  

But we will be okay 

Heart Attack

 I'm sorry for the delay in posting.  

I never made it to Bernie.  Scott called and asked me to come home because he wasn't feeling well. By the time I arrived, it was obvious we needed to go to the hospital.  

He is recovering from a heart attack.  Yesterday they put in four stents and today we will start our new life as a heart attack survivor family.

 

Bernie

 Greetings from Pennsylvania!  I came up to visit my mom for a few days so that I could accompany her to a few appointments, relax and go to a Bernie Sanders rally tonight. While I'm in PA, Scott stayed behind to help move Robby home from college.  After a 9 am virtual final, Robby is officially done with his freshman year in college!

Today I am going to hang out with my Mom before heading to the Bernie rally with her. My mom loves Bernie and was ecstatic when she learned that he was bringing his rally to Harrisburg. She rarely asks for anything, so when she asked if we would take her to the rally, there was no way I could say no. My thoughts on Bernie are complicated and complex, but fulfilling my Mom's request was simple.

Tomorrow I'll head back home and help Robby unpack and organize his college gear. It will be so nice to have him home for the summer!

Better

 I'm still struggling, but the sunshine definitely helps to keep my moods lighter. Scott and I have been having a lot of fun working in the yard, removing old vines and uncovering flowers and plants that have been struggling to bloom. We've planted a vegetable garden in flower pots and blueberry bushes next to the house. From the way that the plants are responding, we should have a bumper crop!

The temperatures are turning and the trees are finally starting to green. I am shocked at how long it has taken this area of West Virginia to emerge from winter. It feels like we are about four weeks behind the blooms around us.  Regardless of the timing, I'm delighted to finally see green and flowers again.  

Today we are heading back to Shepherd to pick up more of Robby's dorm room belongings. I am looking forward to having him home for summer, but I'm not eager for the move and the sudden reintroduction of so much 'stuff' into the house. I'm hoping to spend some time this afternoon carving out a nice space in the basement for all of his dorm supplies.  

 

I'm Back!

 My apologies for not writing at all last week. To say that I was in a bad headspace would be an understatement. It was a rough week with several bright spots that I am trying to focus upon. Thankfully the cloud is beginning to lift and I am feeling more like myself.

The constant barrage of bad news has been overwhelming. Last week I learned that funding for the National Limb Loss Resource Center, the primary source of unbiased information for patients after an amputation. Why is unbiased important? Because every single manufacturer wants nothing more than to have first crack at the newbies.  The resource center stood to provide information and support without marketing. Apparently eliminating this resource is a necessary step towards making us great.

I mentioned bright spots last week. The best was Timmy's 11th birthday. Robby's classes were cancelled and he was able to surprise Timmy by coming home for the night to celebrate. Talk about exciting!

My little bike rider loves his new bike, but he is enthralled by his drone. He spends 18 minutes out of every waking hour flying this tool, not a toy, through the house and yard. He has surveyed our gutters, taken beautiful aerial photos and challenging himself by building obstacle courses. 

Have a great week. I'm going to soak up the sun and try to stay happy.

 

Birthday and Easter

 My Mom came down to spend her birthday and Easter weekend at our house. Her traveling anywhere overnight is a rare occurrence and one that sparked great excitement for Timmy. He spent Friday evening helping Robby bake her birthday cake while Saturday was spent cleaning and decorating for her arrival. Hopefully she was able to feel how special she is to us and to so many!

Sunday was all about Easter. The bunny hopped around the yard in the morning in anticipation of Timmy's enthusiastic collection. My sister, my niece and nephew drove down for dinner in the afternoon. It was nice to have a full house. This was our first time hosting since we have been fully unpacked. With two full kitchens, it turns out this is an amazing house for entertaining.

Unfortunately, all good things must come to an end. Today I'm facing reality. I really don't want to do that! Hopefully we will get some idea on future plans for Timmy's school and my employment. Please send us good thoughts! 

 

Change

 Welp, apparently my 'year of change' had plans beyond the 12 months I allocated. Timmy's school, where he has been thriving, is closing at the end of this term. I felt like the rug was pulled from me when I read the email. Everything that I had planned for him next year (and in the subsequent years) went up in smoke. Yet again, I find myself struggling over the boys' education.

We moved to West Virginia without regard for their public schools because we were secure in Timmy's placement. Now we are in an area which ranks 50/50 in education and offers few choices. What are we supposed to do now?  Sigh. I guess today I start evaluating virtual schools.

Any recommendations?

Creatures

 Our new home, although still set among trees, is considerably closer to 'civilization' than our previous house. Because of this, neither Scott nor I anticipated wildlife intrusions.  It turns out that it doesn't matter how far you are from a Waffle House. If a bear smells your trash, they will come to your house.

Last week we heard a loud crash outside our back door. After investigating, Scott discovered that the trashcan (which was nearly full) was knocked over.  He picked it up and went back inside.  About 30 minutes later we heard the crashing sound again. This time the trash can was on its side and the trash was missing. It wasn't strewn around the yard, it had just disappeared. It was strange!

About 20 minutes later, while settling back into bed and discussing the missing trash, we heard more sounds. Scott took off running towards the back door. By the time I arrived (it took me a few seconds longer because I had put on my leg) I heard the bear snorting at the glass door before running away. In the morning we found the trash bags about 50 feet into the woods, opened and strewn in circles.  

We've never been so close to a wild bear. Although scary, it was also exciting! Our trash is now kept securely in our garage, so hopefully he will not be tempted to revisit.

Unfortunately, the bear was not our only unwelcome visitor. Yesterday afternoon I decided it would be nice to enjoy my lunch on my porch swing. I went outside, set up my audio book and set down. I looked to my left and saw a huge black hose laying down the driveway. It took me about 10 seconds to realize that we do not own a black hose, and that I was looking at an enormous black snake. 

Preparing to move the snake, Scott and I realized that there was another one curled up close by. He moved the biggest one but the medium one went back into a hole under the porch. We set up the camera and waited. 

Throughout the afternoon snakes slithered out from under a small hole in my cement patio. So far 4 snakes have been evicted but we have seen the head of another. Any ideas? Because snake wrangling is way out of our comfort zone!

 

Fun Escape

After a rough week with "really hard math" at school and uncomfortable weather all week, both Timmy and I needed a happy break on Friday. To his surprise and delight, he logged out of school early and dutifully hopped into the SUV for an unknown destination. Timmy is my adventure kid and is always up for a surprise, so I knew it wasn't going to be difficult to convince him to tag along.

We first drove to Red Robin, his new favorite restaurant, where he consumed a double cheeseburger without inhibition. (He witnessed his brother tackle the triple two weeks ago and is pining to keep up.) After lunch we strolled through the mall and spent about 30 minutes picking a new book from the bookstore. At the end of the mall we found a movie theater and his Aunt Sheri! 

He was over the moon to see the Minecraft Movie. Apparently it has been quite the point of discussion among his classmates and Timmy was hoping to see it soon. I wasn't sure what to expect but it was chocked full of nostalgia and was a delightful movie. If you had kiddos who played Minecraft, I will tell you that the movie will probably jog a lot of core memories of the game being constantly played in the background of life. 

 

Pain

 The wild fluctuations in weather have caused my 'not-so-phantom' pain to flare. Sleeping has become elusive as my leg morphs into a raging cricket at night, hopping and kicking with each zap of pain. Needless to say, I'm not planning on tackling any massive projects today. As soon as Timmy logs into school, I'm going to try to take a nap.  Between the plp and my general anxiety and hot flashes, the past few days have been miserable. 

I am hoping to nap and kick the pain to the curb soon because this weekend we have a big FlexyFriends event. We are heading to our first 'ComicCon" of the year. Fingers crossed we do well! Between the layoffs and the tariffs, we are not sure what to expect. 

Tomorrow we are heading down to set up and being mobile would be very appreciated by all.

Rainy Day Pain

 Yesterday was rainy and cold. My beautiful daffodils looked miserable as they were pelted into the ground by the relentless rain. The icky weather will continue through today before it clears to just cold temperatures for the rest of the week. Where is Spring? It feels like the whole world is going crazy!

I wouldn't mind the rainy weather if it didn't bring miserable phantom pain along. My leg has been miserable for the past two days. The twitching and zapping has been exhausting because it becomes most active as I try to sleep. I've developed quite a few tricks over the decades to help, but nothing takes it away completely. I'm forced to just ride it out until it vanishes as quickly as it arrived.

Here's to clearer skies and less pain for everybody. (And maybe a rise in the stock market too!)

Never the Same

 The anniversary of Lt. Ofc. John Ellen murdering my brother was difficult. We all continue to struggle with not only his absence but the way in which he was so violently removed from our world. I know I will never be the same, and I have seen the physical changes it has carved into my mom. The mom and nana that we all knew was shattered on April 3 and she will never be the same. 

I have so much more to say but the tears are starting to fall.  Maybe I'll be able to go into it more tomorrow.  Thank you for your patience as I work through my crazy life.

Still No Justice

 One year ago today, Lt. Officer John Ellen of Travis County Texas responded for a wellness check on Jae Friedman. 

Officer Ellen fired 9 bullets through my blind and above-knee amputee brother as he was sitting in his wheelchair drinking a beer. The last words spoken while my brother was alive were "f*cking ch*nk." 

Yet the blue wall stood to swath him in the protection of qualified immunity and his family was sent the bill for the investigation.

 It has been a year and the pain has not subsided and the questions persist. 

My ire towards the police establishment grows exponentially.

My heart shatters when I think about it, so today I am going to try to stay busy and forget.

But I will never forget Jae Friedman, because his life mattered and he did not deserve the violent end he received. 

www.justiceforjae.com

I Fell

 Happy Limb Loss Awareness Month! 

Unfortunately, there is very little happy to celebrate in terms of living with a disability in modern America. Funding for the Amputee Coalition is in peril as the ACL is being dissolved. Services for disabled Vets have already been cut and needed community resources are shuddering.  It sickens me to my core to see individuals who have benefited from these organizations sit back quietly as those services are stripped for the next generation.  

I want to share a little story that happened to me yesterday. It has left me both bruised (literally) and emotionally. But Timmy quickly reminded me that we get kicked a lot but don't stay down for long, so I have decided to share what happened. I have moved deep into a red state, and the differences are becoming stark.

I was outside in the beautiful sunshine, admiring the flowers and seeing what else is popping up around the yard. I tripped over a landscape rock that I didn't see and stumbled into the center of my driveway before succumbing to gravity. I landed on my sound side knee and hand. Unscathed but stunned, I stayed on the driveway for a moment before starting to get up.

As I began to orient myself, I saw a car loop around our cul-de-sac and pull in front of our driveway. The window was already rolled down and the driver was laughing.  He gleefully screamed "serves you right you fucking libtard" before driving away. 

Since when did seeing a disabled woman fall become a source for amusement? And why did my political affiliation impact their decision to help?  I would help anybody who fell, regardless of the hat they were wearing.

Would you?

Smoke House Burger

 We had a fun albeit quiet weekend. On Saturday my sister came down for lunch and to explore the area. Excited for the opportunity to drive her new Jeep in the warmer temperatures, she was excited to tool us around for a few hours. Timmy seemed especially impressed by the 'headless' Jeep and is looking forward to going road tripping with his Aunt Sheri this summer. 

Yesterday the gorgeous weather continued, allowing us the opportunity to work outside while Timmy rode his bike. Seeing Timmy get back onto his bike was heartwarming and exciting. He has been hesitant about riding (or doing anything deemed dangerous) since breaking his arm last year. Breaking through his fear and regaining his love of biking was fantastic to witness. The smile on his face as he whizzed up and down our driveway was the best thing I've seen all month.

After weeding, planting and riding bikes all afternoon, I decided it would be the perfect evening to fire up the grill.  Unfortunately, after hearing the burgers sizzle on the hot grill our propane tank puttered out and ran cold. I thought it would be easy to finish the burgers inside. 

I never realized it before, but my kitchen stove range does not have a vent. The burgers smoked severely and quickly billowed and filled the entire bottom floor of the house. The fire alarms started beeping aggressively and angrily as we frantically tried to clear the smoke. I opened every window in the solarium, forgetting that I had just hung a stained glass fusion block earlier in the day. The block came down on the top of my head (ouch) but thankfully did not break. 

It took us nearly an hour to clear the smoke out of the house. Scott had to to dismantle and remove the smoke alarms to get them to stop screaming at us. (They have since been reassembled and rehung.) Needless to say, our 'smokehouse' burgers left much to be desired!

Quiet Day

 Yesterday I attended Timmy's Spring Parent/ Teacher conference. He was described as an empathetic, funny, hardworking student. I could not be more proud! He is thriving in his school and is loving having a dedicated classroom in the house. With everything else uncertain, it is reassuring to know that we made the correct decision when it comes to his school.

The weather is supposed to be nice today so I am looking forward to soaking up some sunshine. Hopefully the warm weather will last through the afternoon so that Timmy and I can take another long walk through the neighborhood. We see so many houses with swingsets/ trampolines set up. We are really looking forward to meeting the other kids in the neighborhood.

 

Bedroom Re-do

While Timmy was in class I decided to orchestrate a mini surprise. His bedroom, although not terribly messy, was not organized. He has been living in a state of unpacked but not settled since we moved. For Christmas he received lights that have not been hung, his posters were still not on the walls and the furniture was not in its optimal location. With his classroom door closed I was able to enter his bedroom undetected.  Three hours later, his Dad and I had completely redesigned and decorated his bedroom.

We did not intend for the project to take three hours, but one task led neatly into another. Even though it was a lot of work, I'm delighted with the results. Timmy's collectibles are all concentrated in a 'museum' corner. He has room for his tumble mat and two distinct reading corners, both highlighted with app controlled color lights. Scott and I were happy with the results- but Timmy was utterly thrilled. 

Hamlet spent the night running up and down the stairs, hugging us and thanking us for our efforts. He took pictures to share with Robby and couldn't wait to test it out. Fingers crossed he keeps his new digs clean.

 

normal

 After a nice albeit short visit to Ohio, it was nice to be home. We didn't do anything terribly exciting or adventurous during our visit. Our purpose was to visit and to help around the house, and we were successful in both fronts. It was odd not having Robby with us and his absence was felt strongly by Timmy, who missed his walking and exploration buddy. Without his big brother, Timmy was definitely more bored during this trip. 

We came back from Ohio with enough time to unpack and to enjoy the last few days of Timmy's spring break. Robby came down with a terribly poison ivy rash which required medical attention. We were able to get him to the doctor on Friday and get him started on steroids quickly. 

Today Timmy returns to class and our home should return to normal. I have loads of travel and spring break laundry that requires attention. It always amazes me how a few days away can lead to so much cleaning!

Ohio

 After a long afternoon in the car, we arrived safely in Ohio by dinnertime. It's odd not having Robby with us, but Timmy is basking in the attention.  Today we are going to work in the yard and help around the house. 

Have a good day!

Fun weekend

 While I am sad that Robby's spring break has drawn to a close, I'm happy that he is excited to return to college. He had fun at home but he is missing his friends and the autonomy that being away from home provides.  This semester is going so quickly, he is going to be home for summer in just a few weeks.

On Saturday I decided to take both boys out for a little Bro' Crew adventure. We went to Red Robin (a favorite) before discovering an amazing little art studio. We spent a few hours learning how to work with glass and making sun catchers to hang in the solarium. I was especially impressed with Timmy's ability to focus and the absence of cuts on his fingers when we left. He was definitely very careful!

Today we are starting Timmy's spring break by taking Robby back to college. After we drop him off, we are heading to Ohio to visit with Scott's mom for a few days. As always, thanks to my sister for coming down to take care of the cats.  They love her!

 

Pittsburgh

Yesterday we piled into a rented SUV and headed to Pittsburgh for the day. Our SUV, which was purchased when Robby was born, now boasts over 340,000 miles. Concerned about her ability to tackle Squirrel Hill, we decided that it was worth the aggravation of securing a rental. We knew that a 7 hours RT was going to be a lot for everybody and being comfortable was going to help stay the bickering.

Although the drive became long and boring, everybody held up beautifully. We were able to visit with my Aunt Janet for a few hours before heading back home. Her severe memory issues, coupled with our lack of familiarity with each other, makes conversing for long periods of time uncomfortable.  I never had a relationship with my Aunts, so being throw into the mix as responsible for her well-being is difficult to navigate.  

It was a long day of driving, but I'm glad that we went. Timmy has never met Janet and now he has a memory. (If he loses the memory, he will have photo proof.) Janet has been asking to see Robby, which prompted our immediate visit, yet she seemed to have no real interest in him during the visit. I'm hoping that she will remember that he was there, even if she forgot why she wanted to see him.

 

 

 

Anniversaries

 Yesterday marked 27 years since my foot was injured. Anniversaries are odd. Some years they fly by without pause while at other times I find myself paralyzed by memories. Yesterday was an odd amalgamation of both.

I found myself haunted by what-ifs and memories throughout the night and into the wee hours of the morning. It was odd because it was the anniversary of my accident but the majority of my thoughts focused on my brother. It has been almost a year since he was killed, and I miss him.  I guess my anniversary somehow opened a floodgate of emotions that I have been artfully concealing for nearly a year. 

In an attempt to maintain my sanity and to get through the day, we spent the majority outside working in the yard. While Timmy was logged into class upstairs, Scott, Robby and I cleared out a huge rock garden in our side yard. We uncovered nearly 100 daffodils that had been struggling to peek up through the leaves and debris.  It makes me so happy to look at our cleaned out bed and I can't wait for the flowers to bloom. 

I did my best to try to assist Robby and Scott, but my efforts were minimal. Clearing the bed required a combination of rock climbing skills and billy goat balancing that I simply do not possess. While they climbed the rocks and pulled the vines, I stayed at the base and picked up the debris after it was tossed.  I definitely got the easy part of that chore!

 

 

Home

 Friday was Scott's birthday. As luck would happen, it coincided with the start of Robby's spring break. Going to pick up Robby from college to bring him home for a week was the perfect way for Scott to spend his afternoon. (This came straight from him, not me.) Having a full house was definitely the best gift we could provide, but the Washington Capitals tickets (hopefully timed for Oveckin's record goal) were a pretty close second. 

Yesterday afternoon we headed to hibachi to celebrate the start of another school break. (Finding a new hibachi restaurant was a family priority when we moved.) On our way home from lunch we discovered an amazing restaurant supply store where we scored 10 pounds of irregular sliced Kunzler bacon for $20, delighting my little bacon eater. 

This week will be awkward because Robby is on vacation while Timmy is still in school. This is the first year that their vacations do not coincide. I don't like it, but I'm going to embrace what we were given. This week Robby is home, and I'm delighted.  Now I need to go fry up some bacon.

 

Timmy's First Protest

 Two weeks ago we learned through an email that the clinical protocols that Timmy has been enrolled in and following, the very treatments that has allowed him to regain his health and have moved him into remission, has been summarily shuddered by the republican administration.  Neither the researchers, his doctors, nor his parents were provided time or resources to prepare for this sudden change. Now my child has been thrown into medical peril so that Presidents Musk and Trump can appease the base.  I am devastated and disgusted that my own country would discard my child so callously.  

Timmy, upset about the sudden changes and fearful of what we really don't know, has been wanting action. I can't change President Musk and Trump's agenda, but I can force our local representative's staff to look into my child's eyes and explain why he is not worth funding. How does a man who touts himself to be pro-life, who poses with priests and nuns at every opportunity, reconcile canceling life-saving medical treatment for children?  In reality, and like the majority of MAGA republicans, they are actually pro-procreation, not pro-life. 

Today we are heading to the local offices for our representative and one of our senators. Do I expect it to change anything? Absolutely not. But Timmy deserves to see me fighting for him. Silence is normalizing the chaos of this administration. Ripping research away from sick kids is not normal. It just isn't. So today Timmy will attend his very first protest, and I couldn't be more proud. 

Travels

 The past few days have been busy and stressful. Thankfully my Mom was able to watch Timmy for us, allowing Scott and I to focus on the issues without distraction. Yesterday morning we woke up, headed to PA to meet my Mom and to retrieve Timmy (and Friend.) We have spent a lot of hours in the car over the past three days, but it is nice to be back home. 

Speaking of home, Robby is coming home on Saturday for Spring Break. It is so hard to believe that he is already at the midpoint. He hasn't been coming home as much this semester, which is a good thing for him because it means he is settling in and making friends. Of course, it also means that we don't get to see him as much.

Today will be spent cleaning the house. After being sick for a few days and then traveling for the funeral, it is getting ahead of us.

Next Steps

 My Aunt Judy, my Dad's beloved older sister, passed away peacefully a few weeks ago. Judy has been sick for the majority of my life and, although she was the source of adoration for my father, we were never close. My Dad kept his family at length from his children. I always believed that this was because he was we embarrassed him. Whenever we made the pilgrimage back to his childhood home, I always felt insecure, inadequate and not good enough. Because we were kept at a distance, any familial relationships with his relatives became nonexistent upon his death. 

Unfortunately, and despite my best efforts, this included my Aunt Judy. Scores of phone calls went unanswered after my Dad's death. It became a bit of a joke that I would hear from Aunt Judy when she was drunk enough to remember that we existed and that she liked us. Through her slurred filled words, I would hear her tell me about how much she misses my Dad.  This happened about every 18 months. 

Because I was not able to develop or maintain a relationship with my Aunt Judy, I was unaware of the cognitive decline of her partner. Out of respect for her privacy I won't go into details, but J is no longer capable of living an independent life. This shocked my sister and I who feel quasi responsible for taking care of our Aunt J. Although not a relative by blood, she has been in our lives since our birth.

So, how do you help somebody who desperately needs supports? While her friends are helpful, they are struggling with their own health issues and living life in their 80s.  Immediately after my Dad's death, during one of Judy's alcohol fueled calls, they asked me to assume power of attorney should something happen to one or both of them. I agreed, but the only information I was sent were funeral arrangements (which ironically were not followed because of Aunt J).

What am I supposed to do now? Thank goodness Scott is retired and we are able to take trips to Pittsburgh, because this is shaping up to be a real mess. But it is a mess I feel beholden to assume because of my Dad's love for his sister.

 

Disappointed

After the bright sunshine and warm temperatures of yesterday today's chilly rain feels especially dreary. We had more snow this year than we have in a decade, but both Timmy and I were hoping for a whopper of a storm. Unfortunately, it seems that we are on a warming trend. So instead of lamenting our absent snow, we are looking forward to planting peach trees and blueberry bushes.  At this point, bring on the sunshine!

I've enjoyed having Timmy's classroom in a separate part of the house. It allows me more freedom throughout the day to move things around, make noise and basically exist without the fear of ending up on camera. I do miss hearing his responses though. Yesterday I was upstairs while Timmy was in a map lesson. I heard his teacher ask him where he lived in West Virginia.  Timmy responded- "I live in the part of West Virginia where they have high speed internet and I don't have to marry my cousin."  I do think I will miss overhearing his "Timmyisms" throughout the day, but the separation is definitely best for all of us.

Yesterday Robby received some disappointing news. He applied to travel to Normandy with the National World War II Museum's Normandy Academy. He has had this set as a goal for the past three years and has worked to curate his resume towards this opportunity. Unfortunately, he learned that he was not accepted this year. 

After wallowing in disappointment for a few hours, Robby called me.  He admitted to being bummed but  vowed to submit an even stronger application next year.  I'm so proud of him!

Aunt Judy

 Over the weekend I learned the sad news that my Aunt Judy, my dad's beloved sister, passed away.  Judy had been ill for years and, while her passing was not a shock, I am saddened by the news. Even though the news was sad, I couldn't help but smile when I envisioned my Dad and Judy reunited. My Dad would be so very happy to be with her again!  

Judy lived an extraordinarily full life, filled with travel adventures and an amazing friend network. Our family is in a holding pattern until Janet, her partner of more than 50 years, makes the funeral arrangements. In the next few days I know I will be traveling to the Pittsburgh area for her services. 

It is odd to know that Judy was the final link to my Dad and she is now gone. While we were not close throughout my life, her passing marks the end of those paternal connections.  Sigh. I really don't like change!

 

Feeling Better!

 My apologies for not writing last week. I wasn't feeling well and time got away from me.  But my goodness, what a difference a few days has made. I woke up this morning feeling happy and full of energy. For the first time in a long time, I don't feel like I'm dragging!

Robby has been spending more time at college, which is normal but I certainly miss his presence around the house. This past weekend, must like the week before, was laid back and quiet. I did a lot of sleeping and resting.

While we haven't done anything major, we did move Timmy's classroom from the sun room into a guest bedroom. It wasn't a huge project, but it did require some furniture being moved upstairs and around the house. He is looking forward to having a little more privacy throughout his school day. While I think I will miss overhearing his conversations, I think Scott and I are both going to enjoy having full use of our downstairs during the day.

 

Getting better

 My sick day morphed into a sick weekend. I'm not sure where the days went but they were spent coughing, vomiting, dealing were vertigo and a headache. Scott was the only individual left unscathed by the virus. Thankfully we were all relatively self- sustaining so he was not completely overrun.

I am feeling better this morning. I'm still tired, but I can see without the letters jumping all over the page. My goodness that makes things miserable!  I hope to write more tomorrow as I continue to gain strength. I just wanted to check in!

 

Sick Day

 A virus has invaded our home. Timmy has been dealing with a high fever, sore throat and overall aches and pains. I've been dealing with aches (more than normal) and a fever.  We're going back to bed, but I wanted to touch base.  See you Monday!

 

More Clouds

We just do not have good luck with telescope events! 

Yesterday I took a very excited Timmy to his 'learn to use a telescope' class in the fields of Maryland. His Nana bought him an amazing telescope for Christmas. Although we have figured out how to use most of the features, we were both looking forward to honing it down with a professional. Unfortunately, telescopes are weather dependent and yesterday we had heavy cloud cover.

The instructor who met us in the field was so nice as he stopped us from setting up the telescope. Class was cancelled due to cloud cover. Please try again later. Talk about disappointing!

New Leg Time?

 This weekend was spent toiling around the house with an ill-fitting socket, trying to get settled while ignoring the obvious signs that I need a new leg. Ugh! A new leg in a new state. Do I start all over or do I make the trip back to Northern Virginia to my previous prosthetist? I have no idea what to do because I'm not terribly keen on either idea.

In the meantime, I am developing a significant callous on the side of my limb. It isn't painful but it's growth is obvious. I know that I will be more comfortable when I get a new leg because I have lost so much weight this one no longer fits. 

I suppose I'll spend the day researching prosthetists in the area and trying to make a decision about my next steps.  Wish me luck!

New Hair

 

Yesterday I discovered a new hair salon and indulged in a new cut and color. I must admit, I feel so much better! Apparently having 4 inch grey roots peeking out was contributing to my feeling old and ugly. (Not that there is anything old or ugly about grey. I was trying to grow it out to be all grey only to discover that my color is not yet pretty enough to shine on its own.) 

I feel like finding a salon is another step towards establishing this as our home. While I will probably not stay with the salon long term, it is nice to know where I can go if I need a reliable cut and color. Slowly, things are starting to feel more familiar. But I have to admit, it is still really hard!

Today Scott and I are heading to try to register our cars. Wish us luck. I hate the DMV and I abhor dealing with the government. Should be a fun afternoon!

 

Settling

I feel quasi limited in what I can unpack at this point because I have already tackled all of the boxes that were safe to move. I tried to move some heavier boxes up the basement stairs and became stuck in a rather unsafe predicament. Thankfully Timmy was home and was able to come to my rescue, but I vowed to never again try something so dangerous.

Unpacking is still feels overwhelming although I do feel like we've been making progress.  Yesterday I transitioned from straight unpacking to settling in. I took the time to reorganize things and I even hung a few photos on the wall. We have a long way to go, but slowly we are starting (or at least I'm trying) to make this new house feel like our home.

Today I'll be busy unpacking and settling in while Timmy is at school. This afternoon we promised to complete another few assembly steps for his new rocket. Exciting times!

Outings

 I had a wonderful few days just relaxing, unwinding and staying away from the news and all social media.  I suppose a benefit of being temporarily without employment is my ability to travel on a whim. I was able to spend a few days with my Mom simply because I wanted to get away. Talk about a luxury!

I came home (although this area still does not feel like home) in time to participate in the local Cocoa Crawl over the weekend. Armed with the names of stores and the promise of free hot chocolate, we spent a few hours on Saturday and Sunday traversing the area and getting to know some local stores. We discovered a fantastic hobby shop filled with model rockets, a fabulous new (and wildly inexpensive) hibachi restaurant, and a few cute gift shops. We were also steered towards a park that is model rocket launching friendly, which delighted Hamlet.

As luck would have it, Sunday the Cocoa Crawl led us to Shepherdstown. We were able to grab Robby for a quick lunch and hug. Timmy delighted in seeing the university through his brother's eyes and was eager to soak up every experience offered to him. Between a quick tour of the campus to going through the shops in town, he absorbed every moment.  

We didn't complete the Cocoa Crawl, but we had a great time participating. We needed a push to get out into our new community, and this was the perfect first opportunity. Hopefully, with a few more outings, this new area will start to feel more like home.

Snow Fun

 To the delight over just about everybody in the house, we had another big snow over the weekend. The flakes were huge and beautiful as they danced and fell around our yard. With the world so chaotic and on fire at the moment, it was wonderful to hide in the woods and just watch the snow fall.  

The winters in Virginia have been lackluster for decades, so Scott and I both recognized that we were going to be unprepared for the heavy West Virginia snowfalls. On Friday we went on a hunt and purchased but I suspect was the last electric start snowblower in the state.  

Yesterday we fired it up and it worked like a dream! Scott actually ended up taking it up the street to help out a neighbor who was struggling with the shovel. (The boys would have gone to help her but they were busy exploring the woods in the snow.) The snowblower was advertised as easy and light enough for the elderly and disabled. It's really nice when something actually works as advertised!