Ethan’s Journey

 The rainy day really influenced how we spent our day. Paul made progress on our stair project. To be fair, I told him what my vision was, bought the supplies and that’s where my involvement ends. Paul brings my vision to life with his beautiful craftsmanship! I guess that’s how we make things work. Tomorrow will be 24 years of wedded bliss. I worked on chores this morning but this afternoon I watched 2 movies and started the Arrested Development series again with the family.  Ethan was laughing his butt off like the rest of us. I liked having us all together and laughing.  Ethan prepared one of my pre-made meals for dinner. Avery said in her little sister teasing and tattling tone “Ethan’s food is making me hungry……we need to buy pork more often.” Typical evening. I will likely be making pork more often. As we watched tv, Avery did her homework, smooched Jiminy, did more homework as well as played with, talked to and loved on Jiminy. It seemed productive for them both. S...

 I met up and ate lunch with a friend today. It was nice to catch up with her and find out what she has been doing for the past several months. Paul had a project today. He is dismantling our stairs and redoing them to modernize them. He took the railing down and now it is sure death if you fall on that side. He got a lot done and I am thankful he is so handy. If I were to attempt it, it would look nothing short of a pre-school arts and crafts project. All the dogs and their bedding got washed today. Theo the rabbit got his hair cut the other day. The birds are making their nest with his soft fur. Theo is a naughty bunny and keeps escaping outside so he can eat all my flowers. We just left him out today. He doesn’t go very far. I think it is so stimulating for him outside.  I have a carry on packed for my trip. I packed very light. I even have extra room so far. When I get all my toiletries in my bag it will be much fuller I am sure. Also…toiletries is a funny word. Right befo...

 Fridays! They never seem to go quick. My day was steady, just not quick. I had grandiose plans to quit work early. I then realized that one thing after another kept happening. They were all good things but they created more work for me. Long story short, I didn’t finish early. I did howeve make 3 more hires today. (My goal is 2 per week.) The bright side was that because I was home, I was able to make BBQ pork as well as smashed garlic potatoes and carrots. We had enough left over for 6 additional meals besides the 4 we ate tonight. Paul and I went out with some friends. We had a few drinks and lots of laughs. We enjoyed each others company as well as our friends company. We ran into one of my previous co-workers that I used to enjoy working with. There was some chatting that went on and it was nice to see them. They are one of my more missed co-workers. We are in the process of planning another trip which I am excited about. The trip will be in 2025. It is never too early to star...

 Today was chilly but pretty out. I had the dogs do a scavenger hunt in our yard with Cheerio’s. They got tired after about a half hour into it. They all came in and napped while I did a 2 hour block of interviews. Avery prepared for her presentation for the staff at the High School. It’s Superintendent’s day tomorrow. Avery’s peers have the day off but she is going in for these discussions with the staff. The theme is uncomfortable conversations with under represented students. She did this presentation with a few of her classmates in the fall. It was such a success that they asked her and her classmates back. Ethan joined us again this evening. We don’t talk much but it is nice to have him there. We are re-watching Parks and Rec. It makes me smile when Ethan snuggles Jiminy. It’s really sweet. I think they are good for each other. For those wondering about stool donors….your stool helps regulate the good bacteria in people that have IBS and other intestinal diseases. Some places ...

I watched a story today about someone that donated their kidney to a stranger they had met at a bar. I got thinking about a friend of mine who’s son had a heart transplant around the same time as Ethan. This kid also had to have a bone marrow transplant years earlier. I think back on my childhood and am so glad I didn’t have to deal with these hard ships. I got thinking. I did a quick search and decided to request a testing kit to be considered as a bone marrow donor. Why not? It felt really good to recently find out that my blood donation traveled to Rome Community Hospital as well as Newark-Wayne Community Hospital. Ethan had so many blood transfusions that I don’t think I could ever begin to make a dent on repayment to those that selflessly gave their blood to help save him. So, even though it wasn’t on my radar when I woke up, I will get my testing kit soon and then move forward with that. What other things can I donate? Stool. Yup! They need donors. I filled out a questionnaire to...

 Crap weather today. It didn’t know what it wanted to do. Sunshine? Windy? Rain? Hail? Cloudy? All I f the above….. Today was pretty standard. This evening Ethan came down to watch tv with us. Penny decided to keep his lap warm. I do enjoy that he is with us. He is quiet and we don’t necessarily talk, but he is there. There is a lot of gratefulness around him being with us. And somehow Jiminy got to come to bed with me again. It’s too cold for him outside the bed. That is what I have determined. So he is cuddling under the covers like the little prince he is.

 One of my co-workers was SO needy today. He kept trying to be as close to me as possible. I ended up having to pull his “work space” as close to mine as possible. He is so high maintenance. I am putting in a complaint to management. Just kidding. Look at how cute he is.  Don’t let those puppy dog eyes fool you. He looks so sad, but he had already had his morning body massage and is laying on a heated blanket to help his old bones. We had another day of Avery, Ethan and I on the couch. Not much was said, but we shared a few laughs over the show we are watching.  I have been having these reoccurring dreams of Avery “dying” over the past several years. I dream very vividly  and sometimes can’t distinguish between a dream and reality.  In one dream, I notice that Avery’s neck looks broken and she is not breathing. In the dream I have to choose if I want to initiate CPR or just let her die, knowing if she lived she could be physically challenged or mentally challeng...

 Sarah and I drove back from Pittsburgh today. We had a fun time. When I arrived home, I needed up doing some laundry and dishes and then taking the dogs for a walk. Then another walk, because Avery wanted to go too.  When we got back inside, Ethan was down in the living room. He spent the evening with Avery and I. He was venting about some frustrations he was having. Ethan and Avery had some brother/sister jabs at each other. They were both laughing. They were fun to listen to. Ethan brought Jiminy up on the couch. Jim sat with Ethan for a bit. Jiminy has stimming behaviors that he exhibits. He traveled to everyone on the couch and tried to give them a tongue bath. EVERYONE declined, politely of course.  He is a licker. It gets worse when he is tired. He settled on sitting with Ethan.  I am thankful for this kind of evening. I hope there are many others. I had to go to bed early because I felt exhausted.

Today Sarah and I had a wonderful day of laughing. Laughter is the best medicine. Especially when it is about silly and stupid shenanigans. We had a peaceful day just hanging out. We also were planning our activities for when we go to Florida soon. The planning of the trip is just as exciting as going. This is the re-do trip from January when my back was misbehaving. It’s nice to have things to look forward to. I highly recommend it.

 Dogs are so funny. Ferguson is our chihuahua that is undoubtedly rotten to anyone outside the family. He does have his select few people outside the immediate family the he finds their lap acceptable. He wears the chihuahua badge proudly. To us, he is a delightful and cuddly dog that keeps to himself mostly. We call him the gentleman because he sits politely while you eat and doesn’t beg. He quietly joins your space on his terms and it is like winning the lottery when he does. He bullies the other dogs until Penny puts him in his place. She does it every time. Sometimes she pesters him until he gets mad and snaps at her. She ends that REAL quick. He will then go pout in his crate.   We call him the “chair troll” because he dragged a bed under a certain chair in our living room and he will sit proudly on his throne. It’s dark under the chair and he blends in. When another dog walks too close to the chair he pops out like a goblin from a child’s closet and makes an awful scream...

 I was working today and I looked out the window. I saw Ethan walking around just looking at nature. Enjoying the outdoors. He has been sitting outside more. I was delighted to see. It was a glimpse that made me smile. It reminds me of another family’s sacrifice.  I was able to walk around the field a few times with the dogs. They loved it.  Therefore I loved it. It was a good day.

 One of my heart transplant mom friends sent me an article today that was in the New York Times. It was written by a lady that had a transplant when she was 25. She had a second transplant at some point and followed all the transplant rules with taking medications etc. While reading the article something clicked in my brain. The author mentions that the way organ donation and transplant is set up, it is staged as an “overwhelming gift”. This gift is responsible for saving the day. A healing miracle.  Because everyone sees the miracle, talks about the miracle and focuses on the miracle, it can leave the recipient less willing to talk about the challenges of transplant, creating a “gratitude paradox”. This was a very small portion of the article but opened my thoughts to embrace the idea that in addition to the physical challenges Ethan had suffered through, the lack of control over his medical decisions, the heavy focus on how he should be so thankful casts shadows on processin...

 This evening the four of us were watching tv together. All four of us were laughing. It felt so good. Laughter does heal. It feels good too.  I looked over at Ethan. He was sitting next to Jiminy who was perched, sitting as tall as he could on a tower of pillows next to Ethan. Ethan and his little one eyed friend keeping his “eye” on Ethan. Paul and Ethan chatted briefly about car stuff. Ethan was asking Paul questions. These small little moments have us creeping closer to whatever our homeostasis is going to be. Ethan also shared that he was going to spend the Fourth of July with us for the night. Guess our firework extravaganza will a “go” this year.

I was up in the night for 3 hours. Just wide awake. Thinking about the stupidest most random things. I had some weird and disturbing dreams prior to this little wake festival at 1:30 am. My mind was wandering to the most random and occasionally gross places. I was thinking that my taxes weren’t done yet. I was thinking about animals and what a great parenting model they provide for humans (the kids are too loud? Just eat them.) My mind even wandered to how do blind people know when to stop wiping? Why? Why am I thinking about that? I listened to Paul’s rhythmic snoring. He sounded like he was totally enjoying his sleep. With each snore, he was bragging a little about how he was sleeping and I wasn’t. I took a melatonin and hoped for the best. Finally I fell back asleep around 4:30 am. I was able to sleep in until 6:45, thankfully. I know taxes are a necessary evil. We got our last tax form on Friday. Ugh! Luckily out tax preparer has had everything else for the past few weeks. I do hat...

Life is a series of moments. Some moments are good, some are bad. Some you wish had never happened. Some moments are strung together and seem like a long string of bad luck or good fortune depending on the circumstance and your point of view. While some celebrate their good moments, others are just trying to get through their bad ones. They just try to survive the day and can’t think about the future.  Today I was enjoying my good friend, cup of coffee. Consuming friends….sounds like a new crime podcast. As I was drinking my coffee and letting it warm my hands and soul, I was enjoying the birds singing, the dogs being silly and somewhat annoying and I decided to make a healthy breakfast.  I walked into the kitchen and saw Ethan sitting outside on our swinging bench. He was enjoying the patio as well as nature and sunshine. I was so excited I got to witness this moment. I stood and watched like a creeper, him swinging back and forth, feet dangling, like he was 4 years old. A li...

I woke up this morning to Paul’s alarm going off at the butt crack of Dawn. He got up as well as Ethan and they headed in their cars to Cars and Coffee. Ethan came home afterward. Paul continued to Watkins Glenn with a bunch of other people that attended Cars and Coffee. Ethan didn’t want to drive his car all the way to Watkins Glenn. He came back home and worked on his other car for the majority of the day. At one point he was joined by Theo, our rabbit. Theo was out all day enjoying the weather and eating my flowers. Avery and I did ALOT of weeding. She used the rake to clean out our small pond. We have so many frogs this year. I really enjoy the frogs. They make cute little frog noises and eat mosquitos. They don’t bother us at all. Today I counted 15 sunbathing. They can eat ALL the mosquitos to earn their keep. All the dogs got their bedding washed and their bodies scrubbed clean. They smell wonderful and feel soft. They dried off in the sunshine. I was impressed with my back toda...

 Another beautiful day. I worked outside again today. I discovered a house finch man and lady bird preparing their nest right above my work space. I won’t get upset about it until they poop on me or my computer. We had a bit of drama happening when the Fed Ex driver arrived. All 4 dogs were out. Phineas ran up to his truck trying to find a way to get into the truck so he could go for a ride.  Penny was running up to our driver barking her fool head off while wagging her tail because she was excited but also wanted to alert the world that someone was at our house. Ferguson was plotting this man’s death. He was circling him like the land shark that he is. Waiting for the perfect time to bite. Ferguson also was trying to respect my stink eye as I called his name. He knows the look.  Little Jiminy was prancing around. He was excited and confused by all the other dog’s behaviors. He wouldn’t get near the driver but he was prancing around doing “dog stuff” like the other dogs, ...

I received another call today regarding a bomb threat at Avery’s school. This makes number 4 in a month. This is so stupid at this point. What am interruption. I worked outside again. I was able to take two walks today. The sun felt nice. I had another scavenger hunt for the dogs outside. All dogs have gone to bed in this house.  Phineas is a lazy co-worker. He slept while I worked. He was laying in the sun and panting in his sleep. I am glad tomorrow is Friday! I have chores I want to accomplish this weekend. I would like to do a deep cleaning of things in my house, including animals. I want to shampoo the furniture as well as the rug in the living room. We will see.  I need to put up my bird houses made out of recycled barn wood that Paul gave me for Christmas. I want them to have bird families in them.  Ethan did some painting in the engine of his car. He still quietly walks around the house. I know he feels depressed. I am hoping the better weather will help. We have ...

I moved my office outside today around 10:00. The sunshine was warm. The birds were singing away. I got to watch the flowers dancing in the slight wind. Mr. Robin collected sticks and materials to help Mrs. Robin build her nest. My wind chimes were slightly clinging and clanging together making a soft magical song. I loved it. I made the dogs a scavenger hunt of treats in the yard while my fingers typed away. This is what I have been striving for, for years. This is such an ideal set up. I downloaded a bird call app. While I was working I was also trying to learn which birds were making what noises. This is what women do in their 40’s. They get bird feeders, bird houses and learn their bird calls. I am happily checking those boxes. We had dinner with the in-laws out at a restaurant. While there, we discussed the tomfoolery going on in our world. The senseless shootings going on in the schools. The mad ex-employee carelessly shooting and killing people at a bank etc. Life can end at any...

I have mostly been regimented about going “out on a school night”. Tonight….not so much. Paul went to his bowling banquet. I went to meet friends at a restaurant/bar, to listen to a band.  I had fun. Sometimes I need a reminder that I don’t have to be so regimented ALL the time.  I got home and Paul was not home yet. Paul and I are the exact opposite of most of our friends and family in that we have a separation between doing things together and apart. A lot of things we do apart.  I have odd social anxieties and he is a social butterfly so somehow it works. I am thankful that we have been through so much crap and come through on the other side.  We seem to divide and conquer. Does he drive me nuts in the process? YES!  But the same is true, I am sure, for him. I like coming home to the quiet and peaceful sanctuary I call home. I’m have my own chaos going on here with the dogs running around like circus freaks. I still can’t turn my head to the left…..from my sl...

 We got up and had a nice breakfast with family before departing the hotel. It is fun just sitting around chatting and giggling at different things. Poking fun at life happening around you as well as people watching. I hope that I have helped others feel the same way as they were people watching me. I am certain I have. Occasionally in crowded areas I do the “point at the sky” prank. I just randomly point at the sky and ask the person I am with (who is in on the joke) if they “see it”. They respond excitedly, stating they have never seen one before. The person and I will excitedly chat about “it” but there is nothing there. There are suddenly a group of people looking for “it” in the sky. I logged into my weekly meeting on our commute home. I was able to work and ride. Such a cool thing. I love being able to combine my time like that in such a useful way. Somehow, a few nights ago, I injured myself in my sleep. I am at the age where it happens. There is no time of day safe from inj...

 We had so much fun with the girls this morning. We made two quiches, one with spinach and one with broccoli. I hid 63 eggs for them to find. Ethan received a basket with some goodies geared towards him. We had fun watching the girls look for eggs. We the did some household chores and got ready for an evening at the casino. Paul and I met with family and had a nice afternoon and evening gambling and eating a fancy dinner. Our room over looked Niagara Falls. So pretty from 22 floors up. At our dinner, we ate on the second floor in a nook the had a large glass window overlooking the casino below. It was so cool! It’s weird, Paul and I felt like we had such a fancy evening. Part of me felt a little guilty because I know there are people struggling and sick and we are just living it up. It’s weird the things that pop into my head. Paul ended up calling the front desk like an old fart, to complain about the room next to us. It sounded like they had 25 kids jumping from bed to bed and th...

 Today I spent the day treasure hunting in a field and hot tubbing with a friend in the sunshine. Ethan spent the day mostly in the garage. He is trying to get his supra in tip top shape, as well as working on his drift car. He is funny. He took a break from working in the garage to come inside and sit down. He was watching YouTube and it was about drift racing. It is always on his mind. I have the Easter baskets ready. I have the eggs ready for the Easter bunny to hide. I am excited for tomorrow. I feel like the kids are little again. Ethan doesn’t want to do an Easter Egg hunt which is fine. He has a basket. Rachel is spending the night and we get to include her in our morning tradition of quiche. She also has a basket.  We went out tonight to visit with friends. We saw a band playing and stayed out late. It was a good day.

I walked outside today in the sunshine. It felt nice. I closed my eyes and listened. I could hear the frogs. I could hear so many different kinds of birds. Lots of bird calls that I recognized. My flowers are poking their heads out to enjoy the sun too. Avery is spending one of the last nights of her break at her friends house. I was glad she was away so I could converse with the Easter Bunny about how I wanted things to go on Sunday. Ethan has decided that he doesn’t want to find Easter Eggs and is too old for Easter. He will get a basket of goodies. Rachel is coming over Saturday night so eggs can be hidden around for the girls to find. Avery and I had so much fun picking out goofy items for Rachel’s basket. I am feeling drained. I talked to so many people today and this week, with interviews that I need to quietly recharge my batteries…quietly in the quiet with no noise. No talking. Just quiet. I was even going to let Jiminy sleep in bed with me tonight, but decided against it….beca...

Paul left his phone home accidentally today. He asked me to be his secretary and manage his messages today as he was expecting a few texts from certain people that needed attention. “Of course” I said. I had one moment of the day when I had a little extra time to let my mind wander. At one point, Paul’s phone was blasting off with text after text. Turns out….the texts were from Ethan. Ethan was sharing his car issues with Paul.  This is HUGE news! It was truly amazing to see. Ethan and his dad communicating. I think he is maturing a little bit.

So much rain. So much mud. So many little paws to wipe off each trip in and out of the house. I hate the muddy part of spring. Luckily the bad and good equal out. I saw the yellow petals of my daffodils trying to decide when the will make their full entrance. This morning I came downstairs early and got cracking at work. The earlier I start, the earlier I can end. After Paul left, Ethan came down stairs and sat in the couch. I was also sitting on the couch. I sipped my coffee. He was talking about the storms that were already brewing. The thunder reverberated off the trees and houses. It was cool to watch the flashing across the sky. The rain went from bucket loads to nothing, throughout the day. Avery took a nap because she could. My bright side is that it is spring break and I get to spend more time with both of my kids. Some people aren’t that lucky.

 Today was a chore to get through. It was cold and damp out this morning. I felt like I needed a 3 hour nap all day long.I was chilly and foggy brained so I took the dog on a brief power walk. 10 minutes of too speed walking and then I was too hot. But I felt slightly less drained. Avery and I went to pick up groceries and she made some fettuccine Alfredo pizza with roasted broccoli and a balsamic glaze. Yum! Tomorrow is going to be brutal. I got from phone interview to phone interview all day long. It’s a lot of talking. But for the most part the people are delightful. I do like seeing the diversity of resumes. Some people have worked with wolves, some manatee, some hawks. Some have done this cool thing or that cool thing. Off to bed to sleep away this drained feeling that has dug it’s claws into my soul. 

 Today was really pretty out. A little windy but very sunny. Avery is on spring break so we took the dogs for a walk at lunch time. Jiminy is scared of traffic and doesn’t walk well on a leash. Normally I leave him home, but today I put him in his frog sweatshirt and strapped him into his papoose. The other three dogs were on a leash and off we went. A walk wouldn’t be complete without us being surrounded by off leash dogs trying to smell my dogs’ butts. These two friendly dogs came running up to us. I picked up Ferguson. He was talking smack to these two dogs. He thought his 5 pound self was going to kill them both. Penny slipped her collar and Avery caught her. Phineas was checking out the two dogs. The one dog was thinking about humping Phineas. Phineas didn’t care and was really excited to “play”. holding Ferguson in my arms, with Phineas on a leash, I tried to walk with the off leash dogs up to the door of the house they rushed towards us at. I was trying to walk with my 3 dog...

Ethan had to file for taxes this year. This is his first year ever. As kids age, their “firsts” get fewer and farther between. I still experience my “first” time doing something occasionally. It’s such a weird concept that I could never appropriately convey the excitement I have when it happens. We sat together on the couch. I have NEVER filed my own taxes. I have never done them online. I told Ethan that I would help him but that I had no experience. We read through everything and filled everything out the best of our knowledge. We did have some outside of the box questions about 529 plans, disability, SSI and Medicare. Fingers crossed we answered those correctly.  There were a few swear words spoken loudly regarding the process of taxes. Ethan descriptively shared his thoughts on getting taxed by the government. I can remember having the same thoughts the first time I had to pay the government. Ethan stayed in the living room with Paul and I when he was done. I just love when he ...

 I was able to visit with my friend Heather today. It was fun chatting with the kids and sharing the nuances of our day to day lives. The kids were Avery, Rachel and Heathers son, Aiden. Then Heather and I started to reminisce about “the good ole days” and the trouble we used to cause together. I can’t think of the time I have ever been upset with Heather. I met her when I was 18 years old. I awkwardly asked her if she wanted to come to my room and watch the movie Tommy Boy. She said yes! We joke that I asked her out on a date. Ethan spent another evening in the living room with us. He sits quietly off to the side. He was giving Jiminy a lot of attention. I really like having him around. He has a funny sense of humor.  I am very thankful he is spending more time with us. This morning was so sunny and warm out, it really started to feel like spring. Then it got windy and chilly. Nothing a fire in the fire place couldn’t fix. We did not have any April Fools jokes happen today. I...