A Memory

Disclaimer: I’m grieving and have more feelings than I know what to do with. Writing is one way to sort through them. Not sure if they’ll make sense, but here they are.

Further back. In the month or so of receiving her diagnosis. Early 2017.

The bishop is over to give Carla a blessing. Reilly administers the oil. Or maybe the roles are switched.

I’m crying way before “amen.”

She hugs the bishop. She hugs Reilly.

She says to me, “Come here.” And she hugs me.

Comforts ME.

When she’s the one with less than 30 months to live.

Always a giver; always a fighter. Always loving.

Last Monday

Disclaimer: I’m grieving and have more feelings than I know what to do with. Writing is one way to sort through them. Not sure if they’ll make sense, but here they are.

On June 10 after work I went with Reilly and Z to a friend’s dance performance at the Provo Library. This was two days after Carla’s funeral. I admit that emotions were still a little bit raw and just under the surface. We made our way to the ballroom on the 3rd floor. Shortly after we arrived my friend walked up behind me, said, “Hey, sexy!” and gave me a hug. As we embraced she asked how I was doing. I told her I was doing ok. She said, “Just ok?” By this time I was choked up, and tears were streaming down my face. We released the hug. I looked at her and said that Reilly’s mom died. She looked at Reilly, and he nodded. The performance was about to begin, so she went to get ready.

We found some seats and settled in to watch the work: a series of dances choreographed by a master’s candidate as her thesis. My friend performed the second dance, and then Reilly and Z left to browse the library, as Z was getting a little bit restless and loud. I kept watching the dance floor/stage. A few minutes later my friend made her way over and asked if she could sit by me. We talked for a few minutes until she had to turn on the music for one of the following dances.

In those few minutes, my friend listened. She held my hand. She cried with me. She said something that’s often said as trite, but she did it with such tenderness and compassion that it opened my heart up to being comforted and not just vulnerable. She said fortunately most of the world has experienced what we’ve experienced. If we pick a random stranger on the street, it’s likely that they’ve lost a loved one–a parent, a child, a spouse.

It helped being reminded that people would be able to relate. To understand. To empathize.

I told my friend that I didn’t mean to come to her performance to dump my emotions on her. I just wanted to be able to partake of something beautiful that wasn’t associated with sadness. Still, she listened. She danced beautifully. AND she called me sexy. I am forever grateful.

My Fitness Journey So Far

At the beginning of 2018 a good friend of mine named Amy began talking about her health and fitness goals. We discussed macro intake, elements of the Keto diet, and exercise. She told me of some fitness groups she was a member of. I told her that if she wanted, I could check up on her weekly. Over the next month or so, she told me how great she felt, that the plan she and her husband were following felt like a true lifestyle change–a paradigm shift.

I loved hearing about Amy’s success. She shared before/after photos, and she looked amazing. I wasn’t actively engaged in a fitness routine at the beginning of the year, but with each discussion, I tucked away for later the enthusiasm she shared. There were times after having Z that I thought about exercising, but I found an excuse not to do it. She was now four years old. And I was feeling tired all the time. I wanted to change that. I began researching:

  • Keto diets
    • Could I limit myself to 20g of carbs each day?
    • How big of a commitment would I need to make to change my diet that much?
    • Would this change really be compatible with the way my family currently eats? Would it be realistic and/or healthy to encourage them to eat that way?
  • calorie calculators
    • How much do I eat right now, and how would I change amounts of the kinds of calories I eat?
      • Carbs
      • Fats
      • Proteins
    • How long would I keep track of calories required for weight loss?
      • Is weight loss a true goal, or am I looking for overall fitness?
        • If I were to develop strength and balance, would the number of pounds would become less of determinant in overall fitness?
  • exercise programs
    • HIIT programs:
      • Betty Rocker
        • 90-day challenge
        • 30-day abs and booty
        • 30-day free challenge
      • Nike Training App
    • treadmill
      • how many times/week?

At the beginning of March, I started with a little bit of treadmill. It was hard, and I managed to get 20 minutes at a time, which was almost long enough to watch an episode of Friends. 

In the middle of March, my work office was getting renovated, and everyone would be able to work from home. During this time I ran on the treadmill and did an Abs and Booty workout almost every day.

I bought a Fitbit and started keeping track of calories. And sleep. And physical activity. If you can measure performance, you can improve performance.

Then Spring Break came the first week of April, and we went on vacation to Florida. I thought I’d be able to stick to a workout schedule, but that wasn’t the case. I did, however, manage to go jogging three times during the nine days we stayed. I ate smaller portions, and I drank a lot of water, and I got a lot of sleep. But, I also let myself eat some of Z’s birthday cake and some other treats. Because VACATION.

Considering all the sweating I did in Florida, even in early spring, when we returned home and I weighed myself, I’d lost three pounds.

This encouraged me, because if I could lose weight on vacation, then I should be able to follow a fitness plan during a regular, structured day. Week. Month. Months.

So I kept going. I still had two weeks left of working from home, so I worked hard at near-daily exercise and keeping track of calories. And drinking water. And sleeping more.

After counting calories for a few more weeks, I more or less memorized the calorie amounts for certain foods.

I ate more proteins, fruits, and veggies. I’d cut back on treats (chips, bagels, and sweets left in the kitchen at work) during the week, and allow myself one of the donuts Reilly would get on his way home from the gym Saturday mornings. And I’d try to drink between 64 and 96 ounces of water every day.

After finishing the 30-day Abs and Booty program (which actually took me about 45 days, because I wasn’t going to stress myself out about exercise) I took about a week off of HIIT and just ran on the treadmill. By the middle of April, we were back to working in the office, so I had to really consider whether my exercise expectations were realistic.

If anyone’s wondering when I fit in my exercise, it’s during Z’s ABA therapy, which takes place 4-7pm. Her regular schedule makes it easy for me to stick to a workout schedule.

Around the second week of May, I began Betty Rocker’s 90-day program, which is basically 3-4 days of HIIT per week. I’d combine 20-30 minutes of treadmill with 1-2 of these weekly workouts.

During this 90-day challenge, I realized I could not expect myself to maintain 5-6 days of intense exercise every week. I felt myself starting to burn out. I needed to listen to my body and allow recovery time.

I decided to keep exercise to 3-4 days/week. And give myself about a week break between programs.

I started a 6-week program from the Nike Training app in the middle of August.

Then the free 30-day challenge sometime in October.

Then treadmill for a month while watching The Great British Baking Show.

Then a 4-week Nike program, which has carried me through most of December and into the first week of January 2019.

What next? Maybe a more intense Nike program? Repeat Betty Rocker? Something else on YouTube? We’ll see. This is the longest I’ve maintained any type of consistent exercise since living in NYC. It feels good to have reestablished healthy habits.

The first week of last month, Amy invited me to join an 8-week fitness accountability group on Facebook. She and one of her friends created a nifty spreadsheet for tracking various aspects of fitness. When we were asked to introduce ourselves, this is what I wrote:

Hey, everyone! Amy is a dear friend from NYC, and she invited me to this group. I’ve never really been a part of something like this, and I’m very excited!

My goals are for general fitness, which for me has included: eating more veggies and protein, and consistent exercise. I jog on the treadmill and/or HIIT up to 5 times/week. I love how much stronger and more energetic I feel. Weight loss has been in tiny increments – 7 pounds in the last 9 months, with about 3ish? pounds to go. I may just stay where I am. For me, slow and steady equates to sustainable. And maintainable. Which is sooooo possible! I’ve also been trying out intermittent fasting, where I get to eat all my calories between 12pm and 8pm, which seems to work with my life so far.

I’m looking forward to the next 8 weeks. Mostly to hang out with really cool people in this forum, but also because I like spreadsheets. That tracker is pretty rad.

(By the way, jury’s still out on intermittent fasting, but I actually don’t feel very hungry skipping breakfast.)

Here is this week’s progress, as of Wednesday night 1/2/19:

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There have been times in the past 9 months that I haven’t felt like exercising, so I didn’t. Or that I didn’t feel like running on the treadmill for 30 minutes. So I walked instead for 20 minutes. Or I felt like I wanted a cookie. Or chips and salsa. Or a rare bottle of soda. I let myself have them. I feel like I’ve worked hard and consistently enough to enjoy occasional treats in moderation. (Cue: Christmas break.)

The left side of this photo was taken March 27. I snapped the right side December 21. I’m pretty pleased with my progress. My goal for 2019 is to keep it up.

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Four Zinger Years

This post was written 10 April 2018, but I’m backdating it to Z’s birthday, 8 April.

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April is Autism Awareness Month

Dear Z,

Almost three months ago, you and I got sick with fevers, headaches, and congestion. You and I went to the doctor to see if we had the flu. The doctor sent us somewhere else to get a nasal swab to determine the flu. I’m not sure why he or any of the nurses in the office couldn’t swab us. I still might be a little bitter about it.

The doctor’s office wasn’t entirely clear on where we were supposed to get the swabs: do we get them at the hospital, or at one of the affiliated clinics near the hospital? I should have asked for clarification; part of our long day was that I should have gotten better directions.

We stopped by the hospital first. When we were checking in, the intake lady heard you coughing, handed me a mask, and instructed me to put it on your face. This wasn’t going to happen. I knew you weren’t going to keep the mask on. You sat on the floor, keeping mostly quiet, being very good for a sick 3-year-old.

The intake lady heard you cough again, and she reminded me to put the mask on your face. I didn’t do it, because that was a battle I chose not to fight: I’d rather you quiet than struggle to keep a mask on your face. She double checked our insurance and told us a flu swab wasn’t covered. I was irritated. My head was throbbing. I remember half-heartedly asking about the insurance, and the intake lady answered something. I took your hand and quietly walked away.

We eventually found the place where someone would be able to give us the flu test. We ended up both negative. That was a relief, but we’d spent a lot of the day driving around, feeling like absolute junk. I’m so sorry for dragging you all over Orem and Provo that day.

We both tested negative that grey January day, but I can’t stop thinking about my lingering negative attitude about that experience, especially at the hospital. What I wanted was not to have to explain why you wouldn’t wear the mask. What I resented was the assumption that you would wear a mask at all. Maybe the intake lady trusted that moms know the best approach for putting a mask on their children, since no “normal” sick child would cooperate wearing a mask. I didn’t know how to say I was clueless. What I wanted was an acknowledgement–at least from this healthcare institution, in a state that has a higher population of autistic children–or some sort of effort to accommodate, a simple “if your child has sensory issues, then [here’s an alternative].” That can’t be too much to expect at a hospital that probably sees hundreds of children every day.

But guess what? I figured it out. When we were at another waiting room, the receptionist asked me to take masks for both me and you. You started coughing, and I held a mask up to your mouth. Every time you coughed, I covered your mouth with the mask, and you were actually ok with it. I was so grateful for this!

 

Dadda and I have been your parents for four years now, and we’re still figuring it out. I’m still learning patience, but I’ve appreciated the process of learning to see the world through your eyes. I love how you’re never in a rush. How you give in to adult-perceived distractions, when you’re just enjoying your surroundings. How you run your hands over all surfaces. How sometimes you exercise your curiosity by sticking your tongue on things (which often grosses me out). How you run and laugh and sing–and spin, of course. How you verbalize your feelings even though you don’t have as many words as you’d like.

You’re working on getting more words, though. More skills, more coordination. More understanding. A greater attention span and focus. You’ve developed a liking for coloring and puzzles. You can sit with these activities for at least an hour sometimes. Your teachers have been so impressed with you over the past year. When you began preschool, you weren’t able to sit still, and you had no words. Now look what you can do!

We’ve taught you to repeat simple phrases like, “I’m cool” and “I’m smart”; Lola has taught you, “I’m beautiful,” and on your birthday you’ve been able to repeat, “I’m four.” Four. We can’t believe it.

You are adorable, and everyone loves you. Friends and family, definitely. It’s a little weird when strangers smile at you while we’re out or traveling, but most of the time you’re oblivious and could give zero cares. I need to find a way to live more like you.

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It can be so hard being a kid sometimes. So many rules, so many boundaries. It’s been hard for me to reconcile your supposed limitations with your potential. Just thinking of your immense potential makes my heart full. But to you, you don’t have any limitations, other than your parents’ occasional inability to understand what you want or need. Such understanding often requires words. Which you are acquiring more of every single day. Your language–both jabbering and intelligible words–has expanded our minds and blessed our hearts in so many ways, made us better parents. We’re learning as we go. Just like you, we’re figuring it out. We try our hardest to open up the world to you. No limits, baby girl. No more assumptions.

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We have you as our daughter, and you have brought us more than we could ever imagine. More love. More happiness. More life.

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Happy birthday.

Love, Mom

Year-End Ramble: 2017

This year: Pick your best cussword.

2017 has challenged us in so many ways. It has strained our rights as human beings, divided us from friends and family, tested faith, broken individuals seemingly past repair. It has taken my family down stressful paths. Although we have been blessed with quality time and other graces, others have suffered deeply, and often silently.

Some time during the summer someone from church asked me to help out with organizing potato dishes for funerals. Cheesy potatoes are important to any post-funeral luncheon. People gather after saying goodbye to their loved ones and find comfort in sharing food with those who also love the dearly and recently departed. Their emotional needs are met through one of their most primal needs, by eating something delicious, something made with love.

Cheesy potatoes are only one aspect of the meal, but it’s a favorite among mourners. Lots of starch, and lots of cheese. Those elements in that combination are meant to fire off certain neurons that translate to comfort, which tries to coexist with the burden of grief.

After receiving this assignment, a few months passed, and no funerals had been planned. The first half of the year had been replete with passings-away, but I was not yet part of the funeral meal committee. Then the last Sunday of October the lady who extended the assignment remarked how quiet it had been, and I thought to myself that this was a good thing. I wasn’t opposed to doing the work, but I was glad that people hadn’t experienced that kind of heartache in our ward, at least for a few months.

Go figure the moment someone mentions how a thing hasn’t happened, the thing happens shortly after that. Later that week our ward received an email about the passing of someone from our ward. I researched the person and found out that he had suffered from depression. His beautiful obituary profoundly saddened me. Usually during these times I feel the most helpless, but this time I could actually do something. Never had potatoes seemed more vital. If the other parts of the luncheon failed, cheesy potatoes had to prevail.

I had a list of sisters in the ward who were willing to make the cheesy potatoes. It was my job to call these ladies to see who would be available to provide the potatoes that weekend. I came up with a spreadsheet and kept track of responses and commitments, which would also help with future funerals. Here, I deleted names for privacy:

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GF=gluten-free; LM=left message; nr=no response

The sisters who were able to help that weekend were very kind. I had never really been an active part of this kind of effort, and their love and solemn treatment of this responsibility humbled me.

The ladies made their dishes and dropped them off at the church the morning of the funeral. It wasn’t until the following Sunday morning at church that I found out the funeral had gone well, that the food was delicious, that the family was grateful for all the help and support. I had imagined everyone eating and sharing stories and feeling a degree of unity that only comes with grief over a mutual friend and family member. Potatoes were all I could do—and I didn’t even cook them but just called people on a list—but for this moment, they mattered.

I have several close friends whose lives are entangled with depression and anxiety. They navigate their brain chemistry and the changing seasons and pollution and other circumstances with medication and therapy and exercise and hanging out with loved ones. It’s not easy for them, fighting the grey. But they are brilliant and creative and so passionate about the earth and humankind. They are the best readers and writers and experiencers of life; they are musical and endlessly curious and know all the best cusswords (and usages). I am so honored to know them.

Reilly’s mom has had every excuse to spiral into depression, yet she pushes through with such determination. And a smile. And enduring positivity. She’s coming up on her first full year of bi-weekly cycles of chemotherapy for stage IV metastatic colon cancer. It’s hard to imagine her daily hardship of increasing weakness and regular wooziness, but she has kept busy with work and doing as much as she can. She’s had excellent care with amazing doctors, and she knows she is surrounded by so many people who love her. Everyone faithing her well seems to be making a difference. Her strength amazes me.

She and her family have seen a pet cross the Rainbow Bridge this past month. A Chocolate Labrador Retriever, Maya was a boisterous and carefree and previously big dog, until diabetes caused drastic weight loss, blindness, then finally loss of use of her hind legs. No one likes to hear the vet say what the best course of action is to minimize suffering, even though it makes the most sense and really is the most humane for the dog. It’s painful saying goodbye to a pet, especially after almost ten years of companionship.

This year Alzheimer’s, dementia, Parkinson’s, and other ailments have ambushed or harrowed loved ones’ journeys.

My mom broke four toes when she slipped from an elliptical machine. But she hasn’t slowed down. This is both annoying and endearing at the same time. I love her for that.

Friends in Florida and in/near Texas or with family in Puerto Rico endured hurricanes and are trying to repair their lives.

Friends who married their high school sweethearts nearly 20 years ago have gotten divorced.

Other friends are enduring similar trials and heartache.

Earthquakes. Fires. Volcanoes. Shootings. Tax cuts. Health insurance. Church. #metoo.

How do people find comfort? What helps them in their agony and despair?

Z’s diagnosis was not as much of a bombshell as the anticipation of her diagnosis. This expectancy involved asking myself (after wondering what I did wrong) how I would handle this situation, what our “new normal” would be, how we would teach our innocent, nonreader of emotions to defend herself against monsters and assholes, among a plethora of other questions. But once we obtained a diagnosis, a wealth of resources became available, I found out several families are in our ward who have children with autism, and Z’s ABA therapy has helped her little personality emerge in ways that that weren’t obvious even six months ago. We have received an outpouring of support and love from so many caring people. You know who you are, and we are infinitely grateful. Thank you for your acceptance, kindness, and generosity.

This past year I have looked forward to Sunday dinners in Payson and Saturday donuts with my family. Family visiting from Florida. It has been nice to go on occasional movie dates with my perfect husband. To travel, to take long breaks and relax in our home. It has been rejuvenating to hang out and eat pizza with friends and discuss actions for lessening the hate in this world. Like a good nap or fresh air.

I have enjoyed picking apples and peaches and trying to make pies and making toffee and brownies and other little goodies to share. But I have also found calmness in literally tearing down walls (maybe figuratively, too?) and building shelves and painting and caulking. I have nurtured new friendships. I have explored more good music, movies, books, and television. I have discovered Twin Peaks while rediscovering the treadmill. My heart pumping, blood flowing, and sweat dripping are sometimes all I want out of life. It feels so good.

I have marched.

Voted.

Contacted my senators and representatives.

We have also relished hosting a quarterly lecture series in our home, where we listened to speakers/friends talk about a variety of subjects: Satire (Reilly), the Poison Control Center (Reilly’s sister, Amber), Horror and the Family (Jon Smith), and Fan Studies (Melissa Beattie). What an exciting reason to gather with friends!

Yes, there’s a shload of darkness and nonsense in the world right now, and we make it through one day at a time. Probably more like an hour—or even a minute—at a time. Sometimes at the end of the day things don’t look brighter. We’re still sad or confused or hurt. It is ok to feel this way. And sometimes all we want to do is pull the covers over our heads and cry. It is ok to do this.

It is ok to bring this version of ourselves into 2018, because 2017 was ruthless. Pick your best cussword. You know: it’s complicated. I may spend the first part (or majority) of the New Year swimming in my covers, trying to find/push away sunlight and coming up for air/holding my breath.

This supply of oxygen, though, the most significant mercy that came out of 2017, was that many of us took the time to listen to each other. Even though we have disagreed on many fronts, a greater striving for understanding has risen from our immediate social circles, communities, and the world. This has sustained a hope I will always cling to.

I want to keep listening to you. I want to bolster the comfort and love of real friendship between us. I want to be there, to be the equivalent of cheesy potatoes for you. Something full of love.

Or I could just make cheesy potatoes. And hug you with them. In 2018, and in years to come.

You matter to me.

A Journey and a Process

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There were concerns.

There was knowing without any professional confirmation. We knew, though.

There were doctor’s appointments.

There were assessments.

There was Early Intervention through Kids on the Move.

There was a scheduling for a screening. The earliest possible date was in July.

There were more assessments.

There was an IEP with a panel of special education preschool teachers.

There was special preschool.

There is progress.

There was a cancellation from someone else, which meant an opening for an earlier screening at the University of Utah.

There was a psychiatrist. And play. And observation.

There is a diagnosis: Autism Spectrum Disorder.

Now we are here.

And now there’s more.

Unknown territory for us, but we’re damn good parents that will give the absolute best to our daughter that we can.

Thank you all for your continued love and support and patience for our little girl.

There you are.

 

“Who’s your friend that likes to play?”

There is a scene in the Disney Pixar movie Inside Out where Bing Bong is sad because his space rocket has been thrown away. Joy needs to get to headquarters and tries to cheer him up by being happy and silly, but Bing Bong keeps being sad and won’t tell her how to get to the Train of Thought. Then Sadness walks up to Bing Bong and tells him she’s sorry that his rocket his gone, that it must have meant a lot to him. She gives him a hug, he cries on her shoulder, and he opens up to her. Joy tries to interrupt to say there’s not time for that, but once Bing Bong has someone to sympathize with him, he says he feels better and points to where they can catch the Train of Thought. On their way, Joy asks Sadness, “Hey, how’d you do that?” Sadness starts, “Well, I just -” and then the train arrives.

We know how she did it.

Sometimes all I want is to talk about my problems. My feelings. It helps me feel better to have someone listen and not want to jump in with solutions. Just to be there, to reassure me, to be supportive or say something like, “I’m sorry that happened.” Or “I know how that feels.” Or “What a sucky situation.”

I know what the solutions are. It’s not like I haven’t done the research, and the new information often can overwhelm me with yet more things I can do wrong or have failed at. More often than not I have applied this new information and am still frustrated. There are situations where I feel utterly helpless; there are times when I need to feel the uniqueness of an experience in my life before understanding that others have traveled a similar journey. This is when I can best feel the support of humanity, once I peek out of my self-involved bubble and am reminded that I am not alone.

It might just be certain personalities to offer fixes right away. And it’s definitely my accommodating personality to accept these people while still feeling horrible inside. Yes, thank you for trying to help, but that’s not what I need. Yes, I will feel better soon, but I first need to be allowed to feel sad/helpless/frustrated/embarrassed. That’s a part of my process, and it helps me in the long run if I don’t dismiss it or diminish it in any way.

Of course I try not to be melodramatic or overreact, and I’m resilient.

A not-so-heavy example: Yes, I’ve been complaining the past seven weeks about my cold. But should one suffer with a cold for that long? Should I rearrange my life around coughing, since it has wedged itself into my schedule? Should I just say “Oh, well” when my ribs are bruised from coughing so violently and for so long? No. But these things have happened to me, and I plan to get through them and to rise up stronger and more determined than before.

But for now, my body still needs to expel phlegm. But when I do this, or laugh, or take deep breaths, it hurts my ribs on the left side.

What’s my process? First, whine about it. Check: I’ve told several people, who range in sympathy, from: “Have you been checked for pneumonia?” to “Oh, man, I’m sorry. That sucks.”

Next, process this feedback. I’m glad that I could tell people who were willing to listen. I’m grateful for those who stepped back and truly sympathized/empathized. And I’m learning to be grateful for the form of concern people offer as suggestions or solutions. People mean well. And people have different points of reference.

Next, question myself: Wait, what am I doing trying to understand the people I want to understand me? Why does this feel like a bigger effort from me all of a sudden?

Next, return to feeling grateful: People love me, and they care.

Next, keep on keeping on: I’m going to make sure I get plenty of sleep and food and exercise. I’m going to work hard at work and be a good mom and wife and friend, one day at a time. Hopefully enough days pass to heal my ribs and make my cough go away.

Any time along the way, this process could repeat itself any number of times.

I’m well aware others are in far worse situations. The not-so-heavy example of my bruised ribs partly serves to imply that much heavier issues are going on in my life. I’ve talked to some people about those issues, implemented these very steps of handling my emotions and becoming stronger and moving forward with my life. The sadness, helplessness, and frustration would be a much greater burden without this process.

It’s a blessing to share these clunkier and unpleasant parts of my life with the people who mean the most to me. Thank you for being there.