Pie

I read a Facebook meme today that asked if “your mom made you a cinnamon and sugar treat with leftover pie dough when you were a kid?” I thought “no, but my mom also didn’t make pie”. Then I remembered she did try to make Pumpkin pie for Thanksgiving one year. She bought a frozen crust, filled it with store bought pumpkin filling and baked it. It took a really long time to bake, and she was frustrated, but we didn’t know what the problem was. Later she couldn’t slice the pie either.
Finally we discovered the reason for all her woes. She never took out the paper at the bottom of the frozen crust.

Lucky for her, I married a pie man. She never had to make pie again.

Special Reflection

On Saturday Ava went on a play date with a friend from her summer school camp. Wes always takes Ava’s play dates hard. He really doesn’t understand the skills required for “friendship” and therefore he really doesn’t understand why he doesn’t get invitations to have play dates. What he does understand is that Ava and another kid his age are going to get together and have fun, and that he is not invited. If this wasn’t heartbreaking enough, while Ava was away, I caught him watching videos on his iPad that he and Ava had made while playing sometime before then. He was literally interacting with the Ava on the screen as if she was there in the room with him.

At that moment my heart was literally breaking. I have a real soft spot and sincere empathy for Wes in these moments in particular. I think its because I know that he truly longs to be accepted and included, but does not have the skills and awareness to know how to do this. I also haven’t figured out how to balance the many requests for Ava to have play dates with the lack of requests for Westli. Taylor and Liv made this easier since they were so bonded to each other. Liv usually got the invitations, but wouldn’t go without Taylor. Ava does not have the same relationship with Westli. So much so, that when I told her the story above, about Wes “playing with her” on video, she was like ::shrug:: and went on to tell me a story about her friend’s house.

I’m not sure now which broke my heart more, Wes’ sadness and disappointment around being left out, or Ava’s dismissal and lack of empathy for his sadness.

This is truly one of the hardest parts about parenting children with special needs.

Lucky Leprechauns

Westli LOVES green. So it seemed extremely appropriate that we celebrate the luck of the Irish, traditionally associated with green in the U.S., that also happened to fall on a Wednesday… traditionally associated with W-W-W- Westli in our home. Our little Leprechauns were very busy. They crafted a rainbow paper chain and a pot of gold, made havoc out of the box of lucky charms we purchased and threw streamers all over the house. We knew it was Leprechaun mischief because they left their footprints on walls, doors, windows, and the toilet seat (where they turned the water green AND sparkly!) They also turned the water in Wes’ cup green! Shenanigans were had! They even flipped over our rumba, Henry, so he couldn’t clean anything up!

Wes got such a kick out of most of it. But it did make for a rough day. These kind of things are always a double edged sword around here. While he is excited about “holidays”, he just can’t really handle the changes or disruptions in what he normally expects from the day. We vacillate from the extreme celebrate of these days to no celebration in hopes of not throwing him off. I wish that we could find a nice balance where there is just enough celebration to keep him overjoyed and rewarded for having interest and happiness, but not so much that he can’t function for the whole day. Perhaps one day we will find it.

Another Goodbye

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In 1962 my father, the handsome fellow to the bride’s right, served as best man to the other handsome fellow pictured here. The groom, Bob Muthig and his wife Darlene, remained close friends of my parents through the end of their lives. Yesterday on the fourth anniversary of my Mom’s passing, Darlene lost her husband of 58 years.

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I’m personally not much of believer in the afterlife, but if you are, then you and I can enjoy the thought that these three are sitting at the pearly gates right now sharing a heavenly beer and reminiscing about the “good ole days”.

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I didn’t really think that my heart could hurt more yesterday, but I was wrong. As much as such a reunion might sound appealing, it comes as pain and heartache to those that loved him here on Earth. I send you my most sincere sympathy. I know the sadness and loss that you are experiencing. I think it is a badge of love that we wear forever. A scar of a life lived fully with love and memories that cannot help themselves but to float up to the surface when you least expect it.

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Darlene, Tracy, Kim and all that loved Bob find peace and healing soon.

4 :(

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I have never shared this photo before, but I’m really struggling to connect with my feelings today. So many parts of my world since January 11,2017, has felt increasingly chaotic. I saw a Facebook post that I made on January 10th, 2017, and I thought to myself, “that was the last day that life felt normal”. That is not to say that wonderful things haven’t happened in my life in the last four years, because I have met so many incredible people, many I now have the privilege to call my friends. Jon and the kids and I have built a life here in Oregon that sometimes feels like a fairytale. The dichotomy of my world before, and my world today, is vast.

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The biggest thing I mourn is that my kids don’t have her here as they grow, and she doesn’t get to see them grow up. My mom had a very special relationship with all of her grandchildren. This thought brings out my tears every time it floats across my consciousness.

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I mourn that my sister has lost this light. I think their relationship was much more than I appreciated when my mom was alive. Sometimes I feel regretful that they connected on a level I never did. Then I feel grateful that Amy will always have that.

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I mourn for Gerry. After my Dad passed away, I couldn’t imagine how my mom could go on. I will never forget when she told me about Gerry. I appreciate that he treated her well and made her feel some freedoms in her last five years that I don’t think she ever allowed herself before. I know he has regrets, but life truly is too short for it. I am grateful for the happiness you gave to my Mom as you traveled the states together.

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Wasn’t that a beautiful day that we had? I’m so lucky to share my life with a supportive, loving life partner. I think about my parents nearly every day. I miss them hard at times, tearing up and sobbing. Sometimes the memories are fun ones that make me laugh to tears. Sometimes I still feel pretty angry.

I find myself trying to imagine them here in the throws of political unrest and a raging pandemic…and all that has come with it. Sometimes I would kill just have one last conversation.

Vaccination

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I did a thing today!

I never imagined myself being excited to get a shot on Christmas Day, but it is 2020. A year like none other. My number was picked as I was able to step off the unit and receive the Pfizer vaccine.

More than once in the last week I have shed tears over this moment. The weight of this time, the pandemic, the death-suffering-loneliness, all of it has started feel pretty hefty. In my few moments of quiet, sometimes it just overtakes me.
I mourn many things… the loss of everyday life, my kids graduations from middle and elementary school, vacations, visits from family and friends, a feeling of safety and security, feeling valued in my work, connecting with my patients in the moments when it really matters in the close human way that my work requires at times, dining out, the quiet of my house when the kids are at school and Jon is on a run, the tidiness my house once had when it sat at 1/3 capacity 2/3rds of the day, the laughter of my kids on the playground or socializing with friends, meandering in a store just to linger a little longer, the joy on Wes’ face when we went to a mall with an escalator or rode the Max… so many things.

This little thing I did today (which is making me tired, sore, and a bit woozy) is the beginning. It is a gift of science and exhaustive hours of hard work. I want to take a moment to let sink in the full meaning of this moment.

I know that there is a lot of hard work still to do. Tomorrow I will see more COVID positive moms and try to help them give some immunity to their babies, but I get to do it knowing that my body is hard at work trying to build some protection for me too.

Best Christmas miracle ever!


Merry Christmas 🎄!!

Baking Merry

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The last month FLEW by! I have wrapped up my first term of my graduate program! It feels really good to be able to say that and still feel firmly on my feet! It was a lot of work, and I neglected several preferred things, but its in the bag! Now as we turn our sights towards the holidays, making merry and bright, and saying goodbye to the year… I’m finding myself with a wee bit of time again.

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While I was working after Thanksgiving, Jon and the kids kicked off our holiday season by putting away fall and brining out our holiday favorites. Interestingly there where a lot of things that didn’t make their way out of boxes. It felt like the spirit of 2020 had seeped in and dampened everyone’s hustle and bustle.

So slowly I have been ordering, receiving, and wrapping holiday (and birthday - at the Stanis house) gifts. I’m pretty proud to say that I have everything wrapped that is here, though I am still waiting on a few stragglers to come in.

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Jon baked bread to share with our neighbors, a holiday tradition from his childhood. It somehow seems like the right time to bring those traditions back in a year when so much feels wrong.

Yesterday I whipped up some sugar cookie dough, and the kids helped roll it, cut it, and bake it! They did it with pretty much only verbal cues. Which was great. I always remember feeling so physically tired after making cookies in the past! Tonight we will apply icing and sprinkles to bring them full circle. Should be equally messy, right!?!

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For me, it doesn’t really feel real that it is Christmas time. My body is still quite full of anxiety over the state of our government, the state of public health, my children’s mental and social health, the questions that remain unanswered about the near and distant future. I feel fortunate to have built in avenues of reliable and supported information, the ability to have stable housing and income, a spouse who always works from home, and lots of technology and knowledge to help my kids through distance learning; just to name of few things I am thankful for. I still live with an endemic level of anxiety and concern for our world.

The weight of this year has been hitting me a little harder in the last few weeks, probably as things have slowed down a bit for me.

My experience on the front line:

I set out two biohazard bags and two clean gloves. Then I tied on a scrub cap. Next I removed a clean disposable gown which I placed over my head, threaded my thumbs through and tied around my waist. Then a pair of clean gloves that slip over the gown at my wrists. I removed my regular surgical mask that I wear all day, and placed my plastic disposable container, with my N95 mask suspended in it, over my mouth and nose. I pull the lower strap up over the container and then my head down to my neck, then the second strap. I cover the container and set it aside. I pinch the metal strap over my nose and breath in and out deeply and slowly, testing the seal. I place my goggles that I wear in every room on next. I test the seal again. I adjust the metal strip when my goggles fog a little. Test a few more times until I am satisfied that the fit is right and the seal is solid. Finally I place the strap of my plastic face shield over my head.

This process has already taken me nearly ten minutes. I’m thinking through every step carefully. I don’t want to screw this up. One error at this moment brings this thing home. It puts my family at risk. I’m not thinking about myself in this moment, I am totally thinking about my kids.

I am hot as I walk into the room. The family on the other side of the door is pleasant. They look tired, like all the moms and dads I see. She has a mask sitting just below her nose covering her mouth and chin. Her baby is swaddled and laying on her lap in the bed. His mask covers most of his face. A bushy beard breaks around the edges on the sides and bottom.

I wonder what they think of me as I introduce myself and explain my business in their room. What would I think if someone walked into my room looking as I do now? They are happy to have me there, they have a lot of questions. The baby is completely asleep. I’m relieved in one sense, I will not have to spend a prolonged period of time within six inches of this mother’s face, but I might have to don everything again and come back. My mind sighs. I start describing the expected feeding behaviors of their baby, and the mom interrupts me to share that her baby is special and already exceeding all of these expectations. Of course she is. I spend about 45 minutes talking and answering questions. My face is sweaty. The shield, or maybe the goggles, or both, are starting to fog up.. my mind focuses on that for a second and I think it’s time for me to get out.

As I finally exit the room, I can’t seem to pull hard enough to break the tie of the gown. I curse in my head as I struggle to pull in the right place. I take a breath and slow down, careful to wrap the gown into itself so as not to shake around any droplets. I get one hand out, then with some effort, the other. I mindfully place the ball gently in the waste bin at the door. As I exit, I hit the sanitizer bottle squirting a huge glop into my hands. It takes a bit for the sanitizer to dry enough that I can put on the clean gloves I had laid out before I went in. As it dried, I thought about the order of doffing what was left. Once my gloves were on, I grabbed a new cavie wipe from the bottle and carefully remove the face shield so as not to touch the mask or my cap. I clean the shield and place it in my paper bag. Next I do the same with my goggles. Then I uncover my plastic Glad-wear. I place it over my face. I reach back for the lower strap and bring it up over my head and around the entire container. Then I repeat with the second strap. I place the cover on and press it tightly to seal. Months ago I drilled three holes into the container for ventilation to allow anything in it to dry. I’m grateful today that I prepared this so long ago. Finally I remove my cap with one hand, while holding the bio bag in the other. I am careful to try not to touch the sides or the edges. I compress the bag a little to let out some air and seal it as well as I can with one hand. I take off the gloves, sanitize and put on clean gloves again. This time I open the second bio bag and invert it, pulling it right side out with the other bag cleverly contained with in. I seal it, doff gloves, and sanitize again.

Its been about 90 minutes since I started, but I think I did a good job. I grab a new surgical mask that I will wear the rest of the day. I store my PPE and place the bio hazard bags in my bag to take home to wash. Disposable hats (bouffon caps) are on low supply so the hospital doesn’t recommend using them for routine care of COVID positive patient.

I sent Jon a text to have my house robe waiting for me when I get home. Its our code for “I’m somehow interacting with someone who is or is suspected of being COVID positive”. He places my house robe in the laundry room that connects our garage to the house. When I pull in the garage, he opens the door. I step in and use the heal of my shoe to close the door. He opens the washer. I give him my phone, lunch box, drinking cup which he will wash right away. I strip down and everything goes in the washer, including the scrub cap that I remove carefully from the bags, avoiding touching the contaminated insides. I put on the robe and make my way to the shower. I scrub and douse in soap and water. My robe and towels go into the washer next, and everything is washed immediately on sanitize. I leave my shoes there for several days when possible.

I don’t get to know if these measures are enough to keep us safe, but the routine is the best chance we have to keep COVID at work. I want so desperately to protect my family, that I take the time to think through it, to plan my moves with intention. This patient experienced only mild symptoms, but many on our unit have been quite ill. A few are lucky to have made it. COVID is devastating to pregnant women. Most of them who have been so ill, also delivered prematurely. This has turned out to be somewhat protective for me as a lactation consultant. When they deliver prematurely, I don’t end up needing to spend time at their bedside, I can provide education on the phone and through bedside staff. Still, it’s heartbreaking to watch this play out on the sidelines. I am grateful for the vaccine that is now being administered to the most at risk of our ranks. I don’t know when my number will come up, nor when my family will be able to receive it. I don’t love that it had to be rushed, nor that long term effects can’t be studied. I don’t love having to be one of the first to get it, but I will get it, and I will take these unknowns. Because the alternative is to let this virus continue to ravage the world. When healthy people get vaccinated, it protects the most vulnerable among us.

May 2021 bring us all peace and humility once again.

Long run

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I jogged 4 miles today, dodging raindrops and alternating bright sunshine. It felt good. Before COVID I did shorter “faster” type jogs on Tuesdays and Thursdays and a long steady jog on Saturday or Sunday. While I have been continuing my jogging, I got into more of a slow and steady rhythm to all my jogs. I had some trouble with blisters in my feet, then I had surgery and recovery then heat, wildfires, smoke, virtual school, grad school… lots of things that interrupted my routine. Shortly after I got up this morning it was pouring rain outside and I thought that I might not run at all, much less a long run. So I’m proud of this accomplishment. I got out and Did a long run.

I have learned over the years that goals are deeply internal. If a particular goal is internally motivating I am very likely to accomplish it. If it’s not, my success is less likely. Sometimes external factors can be additionally motivating, but only where an internal factor exists. For example, my Stats instructor asked us to assign the probability that we would receive a certain letter grade in his class. I don’t remember exactly what I assigned, but it went something like this:

A 90%
B 8%
C 2%
D 0%
F 0%
Other 0%

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His comments back to me went something like this:

I am surprised that you would leave no room for some type of unpredictable event to occur that might cause you not to complete the class.

Anyone who has known me for a significant part of my life knows that I’m a textbook example of an overachiever. I wear the badge proudly. I am internally motivated by achieving. It’s the overachiever me that placed my chance of an A so high. It was the external motivation of needing a C or higher in Stats to qualify for my master’s program that influenced everything else. I joked that Jon better pull the plug if I couldn’t complete the stats course! This being because only dying would stand in my way when I was so motivated.

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When I have goals that I’m struggling to accomplish, I find myself wondering about my motivations. Is there an internal motivation? Is it strong enough? What are my external motivations? One thing that I have never fully achieved is to predict the right combination of motivations to achieve all of my ambitions, nor how to increase my conscious motivation to push me towards achieving them.

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TGIF

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Since I usually work every Friday, TGIF is not usually in my vocabulary, but today, TGIFF!!! I can see how live interactions with teachers and other students is helping most of my kids, especially Liv. But I can also see how stressful it is for them trying to follow their schedules, keep track of zoom links and assignments, and focus on what needs to happen in an environment full of things they would rather be doing. We all need this weekend. We need to regroup, rest, revitalize all that crap. Even my dogs look stressed out.

Wes is having a lot of behaviors. I think virtual classrooms are too busy for him and he can’t follow what is happening, so he just doesn’t try. He talks constantly to us or his PSW, but can’t seem to say a word to his class. The microphone goes on and he freezes. He screams and whines about every 5-10 minutes. He is excited for Halloween, which I can’t seem to emphasize for him enough, will not look anything like he is used to. I do t even know how to make Halloween fun this year. He hates that it’s fall, that we have a family of 6, the number 6, that he has to be in school, that we read books together, that his IPad has time limits, that 8 is bedtime, that the sun comes up, that Cheerios and pancakes don’t fall from the sky in unlimited quantities… I can go on, but I won’t.

It’s been raining for three days, on and off. I’m so grateful for rain, but I’m also feeling constrained by it. This morning I curled up on a chair next to an open window in my bedroom and just tried to hear the rain, feel the wind and the light. Loose myself in nature. Sure, it was a woo-woo moment, but sometimes our brain and bodies need woo-woo!

One week down!