How about I do a post about the family for a change? I could use a break from the venting & instead do a post about us. All those in favor say, "Aye!". Oh, that's right I do this for me...silly Jes.
This year has been a roller coaster for more reasons than the pandemic & the election. Those were just the icing on the cake. January was pretty basic. Recovery from the holidays was a welcome relief. In February, Liam went through a bunch of testing because his platelet count was getting higher & higher. As was his red blood cell count. We were told to go to a hematologist/oncologist at the beginning of the month. Because A-T kids are 1000 times more likely to develop leukemia or lymphoma than the general population, we were understandably worried.
Just as we were waiting for test results to come back, I received a phone call from my stepmom that my dad, who had been battling post-polio syndrome for the last 5 years, he'd had polio on the right side of his throat when he was a kid, was in the hospital & that there wasn't a whole lot more that the Drs could do for him, except keep him comfortable. She said, she was calling all of us kids to come & see him while we still could & as soon as we did, the hospital would release him to go home & receive hospice. We arrived within 24 hours & we all got a few minutes alone to make our peace with dad, who was not always an easy man with which to get along.
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| Dad & the boys |
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| Daddy's little girls |
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| All of us |
After 2 days in the hospital on the ventilator, dad was released into the care of hospice. Grandkids, & my brothers & sister all came & went back & forth from AZ to Utah wanting to spend as much time as they could with dad while also working & taking care of their families. Being as I came all the way from WI, I intended to stay there for 2 weeks & then head home. I got to spend time with family I haven't seen in years & I got to sit with my dad in bed & watch John Wayne movies & Rockford FIles on DVD. It was wonderful & painful at the same time. I loved seeing him & getting to spend time with him, bonding over our love of John Wayne but this was not the dad I knew & loved. This was his shell. He was so tiny & weak, in so much pain, struggling for air, coughing up mucus constantly through his tracheostomy. My daddy was a big strong man, loud of voice & opinion. Who ruled with an iron fist & protected with his vitality & heart.
He held on with hospice for just over a week, the night of the 29th of February, he was very agitated, we had a hard time keeping him in the bed, he kept trying to get up & go, we don't know where, but he was too weak & ended up falling & hitting his head. He was fine but very disoriented & at one point as we were all trying to keep him from getting up he kept reaching past us & looking over our shoulders... That night he passed away in his sleep. We can only imagine what he saw waiting for him over our shoulders that he kept reaching for it & trying to go towards it. During that night none of us slept well, as we were all worried he'd try to get up while he & Connie were asleep, we even tied a piece of yarn from his wrist to Connie's so if he tried she'd be alerted. He never tried & as I found out later, several of us had gotten up a couple of times to go peek through the crack in the door of their room to make sure all was well. We don't know when he passed for sure but he was cold when Connie went to cover up his legs the next morning. She came out to the breakfast table where my eldest brother & I were sitting & told us, in tears, he was gone. I ended up having to extend my stay through to the next week so I could help Connie with the funeral arrangements along with my brother Mike.
As if all of this wasn't enough, I was missing my family so badly & while I was gone our sweet RUby, a vizsla-Irish Setter mix developed a malignant growth on her abdomen & had to be put to sleep. So I wasn't there to say goodbye to our sweet little funny, goofy, lovebug.
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| Ruby naps like the peoples do. |
Holding on to my family, my sister, my brothers, my nieces & nephews & my stepmom helped with all the pain & I am so incredibly grateful I was able to spend time with all of them.
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| Connie, myself & all the nieces |
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| Connie (holding dad's picture), myself & 5 of my 9 siblings. |
It was a long 2 1/2 weeks & I was extremely tired & so ready to go home. Once I got home I came down with a nasty little cold. I was just worn out from the emotional rollercoaster I had been on, and the late nights & very busy days as well, all the crying didn't help either I am sure. Came to find out quite a few of my extended family ended up getting sick after the funeral. No fevers or anything just sinuses, coughs, a lot of laryngitis, & fatigue. But just as I was getting back on my feet, the pandemic hit & I had just decided for the safety of our family to pull my kids & make them go virtual when, 2 days later, all the schools shut down & everyone went to virtual. We also got the results of Liam's many blood tests back. He has been diagnosed with Myeloproliferative disease. So far his platelets aren't so high they want him on medicine or are worried about leukemia but cancer of the blood or bone marrow is a possibility already in A-T kids & add in this additional diagnosis & his chances of it developing are even greater. So we see the hematologist/oncologist once a year & keep an eye on his blood counts. Until the blood counts get excessively high, monitoring is all they can & will do. Frustrating is not a good enough word for how this makes us feel...just one more thing to worry about.
But we have enough to worry about at this point in the year so honestly, it all got pushed to the back of my mind. Going virtual was its own kind of stress but at the same time, it relieved a lot of stress for me w/ regard to my worries about the virus.
Although if you have to do virtual I highly recommend you have a kid who likes cooking & is taking a cooking class. McKenna was taking several & in her worldwide cuisine class, she had to make a lasagna for us. It was delicious!
But like all of you going to the grocery store was really not fun. As even Walmart out in the sticks was devoid of a lot of necessities.
But it did allow for a lot of home improvement projects for both PD & I...things we'd been meaning to get to but now we had no excuse as we couldn't go anywhere else. Home Depot online rocks!
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| Entryway Before |
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| Entryway After |
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| Installing a linen closet into the wall between McKenna & Nolan's room |
Hall Linen Closet After
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| Finishing up the craft room in the basement we started a few years ago. |
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| Finished craft room, just need to add decor. |
Not to mention the garden & deck in the back yard we wanted to complete & did. I spent a lot of time on the back deck this summer, trying to get away from everyone.
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| Dirty after a long day spent putting in the garden |
And Liam's, & my birthdays to celebrate. Liam was able to enjoy a drive-by from a bunch of his teachers & lots of classmates for his birthday. He loved it!
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| Meanwhile, I was quite content with a simple dinner on the new back deck with my family. |
In June my youngest graduated from 8th grade. And I was so proud & so weepy all at the same time. No more of my babies are in elementary school.
4th of July was very lowkey as was Nolan's bday the next day. He got his very own Chromebook & some downloadable content for his video games on the PS4.
We also were able to spend more time together playing games...
Then Grandma Connie came in mid-July & stayed with us until the end of August. She did so many fun things with us...from canning to teaching McKenna how to sew to baking with McKenna to picking sunflowers to watching movies to playing games to sitting on the back deck eating s'mores for her first time & just enjoying the summer weather & nature. We had a really great view of a robin's nest in one of our backyard trees.
We were very sad she had to go back to her own life at the end of the summer & she was supposed to come back & spend all of December with us but now it is too dangerous for her to travel anywhere. But we'll see her again next year once the pandemic has started to fade away like a bad dream. There is always tomorrow. And we call & talk to her often & there are video calls too. She knows we love her & miss her so much & we know she feels the same.
The second weekend of September we all loaded into our van & headed 4 hours southeast to Indiana to pick up the newest member of our family. Her name is Artemis & she is a Vizsla/Weimaraner mix, also known as a Weizsla.
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| She is such a sweetheart! |
This brings us back to the start of school & while our high school did go back to in school teaching, they offered a virtual option & we took it. So McKenna & Nolan are still doing all of their learning at home. It hasn't been easy but it has been doable & very worth it, especially as the virus is now sweeping the nation once again. In mid-October we were able to get together with a professional photographer, Britney J Photography, who also happens to be a great friend, and updated our family pictures. It was so much fun & so exciting to see how much we have all changed in the last 7 years. That's how long ago we had professional pics taken. I cannot thank Britney enough! And I highly recommend you check out her website! She's amazing!
We didn't participate in the trick-or-treat ritual this year, meaning we didn't hand out candy as all of our kids are too old to go trick-or-treating anyway. So we stayed inside carved our pumpkins & watched kid Halloween movies together. And ate our own bowl of candy.
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| From L to R McKenna, Liam, Nolan & Mine. |
Can you tell I LOVE Halloween?!?! It's my favorite holiday all year long. Followed by Christmas.
Our Thanksgiving dinner ingredients have been purchased & I am ready to get started with my day of cooking. Sending all the best wishes to all of you this Thanksgiving, praying for each of your safety, good health, & happiness. Please, if you can, stay home this year. Thanksgiving will be back again next year. For the Drs & nurses & various other hospital & emergency staff please stay home & support them by not spreading COVID-19.
All my love,
Jes