In Hope of Joy

2018/2019 have been immersed in my experience with depression. I’ve learned its names, kicked its butt and been trodden down by it too. Waves came in and waves went out and I laid hold of Hope. I hadn’t ever chosen a “word of the year” before, but it seemed right to claim hope for 2019. It was surprising how much power that decision produced. When difficult decisions came up, as they do in life, I made decisions based on hope. Meaning, when I was paralyzed by the possibility that I was making the wrong decision, I chose to make the decision out of hope for the best outcome. I won’t dig into it now. But it mattered. And helped.

The last few months, depression has been a little less heavy, but anxiety has been high. I get hit with it often and intensely, though no panic attacks, thankfully. It’s been a very physical and emotional response to life’s stresses.

I am tired and distracted and really struggling to form sentences and thoughts right now. But I want to get this out. I’m going somewhere with it.

The girls and I have been taking taekwondo twice a week. The instructor says it’s awesome, because we can leave everything at the door and think only about taekwondo. But I can’t always leave it at the door and it’s heavy to carry everything with me. He also says that he wants to live to be a 3-digit-number (meaning 100+) and expects us to respond that we do too. But, I don’t. I have had enough suffering and I’m tired and am hoping my work on earth doesn’t last that long.

I recognized something from trying to think of an answer to the taekwondo master if he confronts me about my not-responding to his 3-digits-old question. I realized that I am living each day, just crawling to reach the next. My goals extend only moments ahead, with the ultimate success being to make it to bedtime. I am so weary. I am so depleted.

And that’s why I’m blogging this morning. Because I realized that although I am not living a terrible, miserable, suffering-filled life 95% of the time, because of my physical fatigue and depletion and the fear of my own developing health issues and anticipation of other hard things in the future….. because of those hard things going on in my head and body… I’m living with dangerously low levels of joy. I am sincere, compassionate, determined, committed, supportive, caring, and genuine. And sometimes I am silly and sometimes I stop for a second to look at the gorgeous leaves as they change colors. But smiling, laughing, and joy are distant.

Joy.

Joy is a big word with complex meaning. It can exist even within suffering. I want to find it.

2020…. when it gets here. I’m naming my word of the year… the word that seems most impossible to find. Joy. I did that with Hope and I discovered that I could find it.

Now I’m hoping for joy.

My living-in-hope self at Maggie’s 10th birthday party

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Schooldays

Hot topics in my Facebook circles:
Sexual identity
Autism and its portrayal on television
Self care

So here I will say: I think the androgynous “Barbie” doll is brilliant. My girls have been confused by the way the boys’ toy aisle is green and black and full of fighting toys and the girls’ toy aisle is all pink and makeup-related toys. I’m always going up-current to tell them, “Girls are all different. Different interests, different strengths, different opinions!” I actually avoid toy aisles when I can, because the marketing pushes them to conform to one version of girl and they just don’t all fit. It creates unhappiness and discontent. Unlike. A doll that is more androgynous is great for this. When it comes to the LGBTQ+ issues, I don’t have a strong/firm belief about what is write or wrong. (80% of my Christian friends can gasp now!) I do have a strong opinion, though… don’t worry. Wait for it? I believe we should love each other. And I certainly don’t believe we should villify or condemn any “sin” over another. I am really uncomfortable calling LGBTQetcetera behaviors sin, though, because it’s not like it’s a chosen difference in brain/body chemistry. There are loads of intersex traits that have caused infanticide and abandonment for ages. Should those people abstain from marriage? What’s God’s heart on this matter? Anyway. I’m not digging into the Biblical or historical context for this debate, because I just don’t have time. For now, I will settle for loving and welcoming everybody, no matter their gender status.

Autism is not all high functioning. Autism is not always a superpower. Autism is not always a sort of “next step of evolution.” Autism can not usually be altered or cured. Nope. Those things are true for a fraction of the autism community. So it’s great to be aware of those differences and celebrate them. But, it is a disservice to the rest of the autism community to guide the public’s opinion into thinking that it’s “what autism is.” For many, many, many people, autism is a disability that cripples and harms and just generally sucks. We learn to live with the limitations and we find ways to survive and even thrive… but it will never look like The Good Doctor or Forrest Gump. That’s all.

Self care. It’s come to our attention that my personal self care regimen needed serious beefing. That, or I wouldn’t be able to sustain this mothering business with any semblance of mental health. Anyway – it’s taken a lot of planning and intentional prioritizing, but I feel like we’re off to a really good start this fall. For me, self care looks like eating, scheduling medical or therapeutic care for myself, self patience, exercise, and drinking more water. And resting. And leaving the house regularly. Three days a week, I leave the house for a few hours with kids to take them to lessons (art, ballet, taekwondo). I also have one additional day each week where I leave the house ALONE for 2-5 hours to run errands, go for a walk, or eat sushi. I go on Saturday and Brian goes on Sunday. It’s hard to trade off like that, but the reward has been worth the cost. Anyway – I’m too tired to write more. This blog has a million pictures and it’s taking too long. I’m drinking coffee and lying down for a bit.

School has started! And extra curricular activities! And while in day-to-day brain-space, I struggle to think beyond the moment or the hour, when I look back on photos, we’ve had a pretty spectacular August and September! I’ll upload and caption some photos for remembering by.

Love you! Don’t hate my conservative-liberal Christian self, k?

Hiking food!

All the girls have cooking projects associated with their skill levels. Anna made banana cream pie with meringue. YUM.

Maggie made french toast!

Daniel was talking a mile a minute yesterday morning. I encouraged him to call Grandpa… which he happily agreed to!

Captain before getting another buzz cut.

Wonderful family turnout for Carrie’s 7th birthday!

Daniel (100% tube fed) wanted to play with the cake.

My lovely 7-year-old.

Birthday moments.

Maggie made “monster fruit” for one of her cooking projects.

Maggie made “monster sandwiches” for a cooking project too.

Fifth grader!!!

1st grader! (pre-school level schooling)

4th grader!

Preferred pose.

1st grader!

A SEVENTH grader!? What happened to my babies!?

Cute things happen when the kids have my camera.

Sunny days.

Before we left the lid off during the rain recently. Oops.

The grass is now green again! Just a couple weeks of rain and it’s all back.

Love these dogs.

A moment’s respite in the garden with my honey.

Spending some time in the shade of our fruit trees.

Love

Daniel is wearing an eye patch on alternating eyes to address some vision concerns.

“Exotropia is a type of strabismus, which is a misalignment of the eyes. Exotropia is a condition in which one or both eyes turn outward away from the nose. It’s the opposite of crossed eyes.” Taking turns with eye patching will hopefully strengthen each eye.

A sweet moment this morning.

My oldest and my youngest.

Taking the schoolbooks outside.

Jordan after going for a walk… time to throw a bit of gravel!

Carrie says that she prefers sparring with short people, because it’s hard to reach above the belt with adults!

Sparring practice at taekwondo.

Maggie’s turn to spar with the high level black belt.

We’re learning fast, but there is a lot to learn.

I sat out of sparring this day to aid in the recovery from a cold virus.

This is what I do when I take myself out for lunch.

We were trying to film a congratulations video for Neal and Stephanie at their wedding.

Jordan at the pediatrician appointment. He does not like doctors. He coped really well… made it through without a complete crash.

Saying farewell to a special day at the beach.

My friend and I got to spend ALL DAY without kids at the beach to rest and restore.

Our pretty house after new exterior paint.

A sweet moment on a tired evening.

Daniel did a long evaluation for both speech and occupational therapy. This was at speech. We get to start in-home therapy soon!

My silly Maggie.

Brian’s been going on backpacking trips – just little 1-3 mile ones lately. This time, they stayed overnight!

Camp!

Creek!

They’ve had fun learning about and shopping for used hiking gear.

My sister and I got to go out to dinner with my big brother!

Anna had her vision checked.

Scary painter maneuvers… it’s two stories down!

Our dogs ran away in a spectacular thunderstorm! They were found nearby, soaked and limping. Such a relief to get them home. They were nervous for a few weeks after, but seem to be settling again.

This goofball…. she wrote these signs and stuck them ALL OVER the house!

LOL

Our fat cat, Boots.

I cut off my hair! Been wanting to do it for years. I like it!

My brother got married on the sea in Kos, Greece!

We couldn’t attend, but it looks like it was gorgeous.

Party before or after?

Cuuuuuute

And a few photos from August… Anna and her friend baking for the camping trip!

Maggie and me on our way to visit my parents and sister.

Testing hammocks.

Our filthy yellow house BEFORE getting washed and painted.

Dump trip!

Water table therapy?

Without braces. Looks a little stranger than usual, because I don’t know what’s happening with the diaper or twisted shorts. 🙂

Carrie worked very hard on an elaborate box car.

Cute feet. He’ll go through another round of casting early next spring.

The little pool was a lot of fun.

The little kayaks were lots of fun too!

Visiting with new friends.

Anna spent almost a week with Grandma and visiting with cousins!

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Embracing the Little Griefs

I found myself in a hard place yesterday when I was unexpectedly confronted by a new loss. And I’m just experiencing the process of grief and the complexity of emotion and my body’s response to new micro trauma. I’m processing complex thoughts about the bit of new news about Daniel’s health that may have been knit together in the womb… and my response to my Creator about that. And I’m processing the thoughts and emotions that come as I consider the brokenness that was added and compounded by the utter failure of the adults in Daniel’s life to provide the most basic of care to him.

Sometimes the grief lays heavy, like a smothering, painful blanket. Sometimes it is light, like a dancing balloon in my hand. Sometimes it’s laced with fears or anxiety, but not always. (What will happen? Will he be able to ___? Will this cause him more suffering? How will he cope with the treatment?) Sometimes it’s red hot like anger and judgement, but not always. (This should not have happened to him. The harshness and absence of touch and love and speech he experienced were evil. I hate that other children are still experiencing this.) Sometimes its the seed of love and nurturing and pride in who he is and how I’m caring for him or the gratitude in the ones who did everything they could, despite everything that was against them.

I don’t rush through all this when it happens. And I’m writing this to encourage myself and anybody reading… to not rush. We have rights here, in this land of grief. I own this plot. I have multiple plots. Plots where I long to hear Jordan’s voice. Plots where I desperately desire to take Daniel’s fear and pain and isolation away. Plots even where I just miss my horse, the everyday companion of my youth. Plots where I miss my Grandpas. This is my place and I am allowed to visit when I need to.

My new wedding band says, “Poured Out – Stand Firm – Made Whole”
My life…. is poured out. I live it completely, recognizing I get to do this just once… pouring it out each day. My goal is to pour it out as love.
My belief… despite everything that clamors to turn me against my Creator and curse His name… I am standing firm. I stand firm on the faith that He will finish His good work and that His plan is good. I have staked everything on this.
And my hope… my hope is for that day when all the brokenness is mended. When the Lord makes us whole. When the darkness is no more and the losses are turned to beauty.

So yeah. It’s medical season at our house. The girls haven’t had checkups in a long time, so I have been working them into the schedule with the pediatrician. Jordan has had a little to do. And the dentist. But mostly, I’m catching Daniel up. I fired a hospital, because their scheduling rules are condescending and threatening and I’d had enough… so that meant starting from scratch for his new specialists at the neighboring hospital. Oh, and I’m trying to get me healthy too, so orthopedist and doctor stuff for me too.

I have a login for MyNemours for Daniel’s team on the east coast.
and for MyHealth for all of the kids pediatric team
and for MyChartWeb for the specialists at the hospital that I probably don’t get to see any more
and for MyChart.tvc for everybody who is part of this other clinic network
and of course MyChartor for my doctor.
I am gonna see if I can get some of those merged, but each one has 2-10 providers, so it’s more efficient than it looks… we just have that many people we have to work with. Get to work with.

Daniel has Nephrology (kidneys), Endocrinology (including growth issues and brittle bones), Cardiology (praying his heart still looks good), and Physical Therapy evaluation coming up. And I am scheduling for his next casting appointments for February back east. We just finished an Occupational Therapy evaluation, a Speech Therapy evaluation and an opthamologist appointment.

About his eyes. Soooooo – when we’re born, our eyes develop as we stare into our mother’s face, look around the room and explore the world. Daniel only got 10 days with his Bulgarian Mama. And the majority of the rest of his first 4 1/2 years were in a small room, mostly confined to a crib. He was also born with some low muscle tone issues. And… his eyes are drifting apart. He’s using just one eye to focus on things anywhere much more than an arm’s length away. He’s alternating eyes, so they’re both still functioning, but they aren’t working together properly. We’re going to try patching his eye, alternating from one to the other, to see if they can grow stronger. And if that doesn’t work, he may need surgery. And I’m grieving that this little boy has to have something stuck over his eye every day for three months. And then he has to go to the doctor again. One I thought we weren’t going to have to see any more until he’s reading. And I hate surgeries. So. I’m sad.

Okay. Done meandering through these thoughts for now. I’m tired. Time to let my brain switch tracks. I’ve got a grocery list to make and a fiction book to open.

In his happy place.

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Camping 2019

Lakeside campsite… my dad and mom came up for two days too!

Daniel loves stealing his grandpa, playing in rocks, playing in sand, throwing rocks, and splashing in the water.

Throwing rocks:

We have our original inflated kayak, but new arrivals this year were two hard plastic kayaks!

Maggie and Carrie especially spend a lot of time on the blue kayaks, ranging far and wide!

Anna and her friend Shaylee were our local teenagers (despite neither being 13 yet). They consumed huge amounts of sugary snacks and produced more words per minute than a radio show. Thankfully, they directed most words towards each other.

Turns out that Anna’s dog is a terrible swimmer with or without the life vest.

Weather was not hot, but it wasn’t cold. Just lovely for long days in the water.

Home base smelled like smoke and kicked up endless dust and fir needles!

Daniel didn’t want to walk much… but I had him do some walking so I could video how he’s doing:

Here I am, making sure the kids kept fed with a few healthy things now and then!

Here’s 10-year-old Jordan, outgrowing his chair that we got three years ago when it was much too large for him!

How many eggs?

Scenes from around camp.

Anna also bought this hilarious dog carrier… and then decided it was too difficult to carry him that way too!

Daniel managed to get around the campsite a bit, but when we went out to the campground roads, he was fast!

Sadly, Jordan didn’t like the kayaks at all this year. But the rest of us did!

It was a real pleasure to introduce Daniel to camping.

Jordan liked to spend most of his time in his own tent, but came and hung out with us too. Here is Dad reading to me.

Mom throwing twigs in the fire as we listen to dad read.

The best-dressed of the camp!

Tired boy.

The kids made a lot of these!

The water was lower than we’ve seen it in years past.

Brian’s dad was able to join us for two days also! (We stayed 6 total) He was awesome with the kids… here he is playing endless rounds of Mad Libs.

Reading Mad Libs

One other family joined us too and we played, played, played!

Pappy was generous with all the grandkids… even to babysitting anxious dogs!

Jeff got quite the chuckle out of watching the two younger dads trying to start fire with sticks and string… unsuccessfully.

Trying…..

Six-year-old buddies.

It’s always hard to say goodbye. Even when I want to go home. Even when I’m exhausted and dirty and stinky and want my own bed.

Brushing his teeth in the light of the sunset!

Washing his feet in the lake before bed.

Anna didn’t seem ready to say goodbye to the lake either.

Friends standing in the wind, taking photos of the sunset.

Goodnight lake.

Goodnight darling.

Goodnight.

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Daniel Nutritional Evaluation 2019

Many of you know that Daniel has a feeding tube and that it’s important to me that he eats normal food anyway. I just have to blend it.

The tricks with a blenderized tube-fed diet:
1. Volume… you have to add lots of water to everything to make it runny enough to squirt through a tube. Lots of water equals meals that can get bigger than his stomach!
2. Hunger cues… when I feed him constantly all the time as much as he can possibly hold, he rarely gets hungry and regularly feels over-full. Learning to eat orally is impeded by feeling full all the time.
3. Reflux… liquid food and large volumes of it is easy to throw up or burp up or generally reflux. Daniel used to do this often on purpose and definitely developed preferences for different meals!
4. Having food available right when you need it… I pre-cook and blend a lot of foods, because some foods just don’t blend easily in small, meal-sized quantities. They stick to the side of the blender cup and that’s that. I have a baby bullet (Thank you, Robin, for the replacement!) for blending meal-sized meals out of foods that are soft.
5. Varying metabolism and gut speed… when Daniel’s metabolism slows naturally or due to stress or pain, his gut moves more slowly. His stomach doesn’t empty as fast. Nothing is as fast. And then he drops weight, because he can’t eat enough. Bummer dude.

We’re hiring a nutritionist/dietitian to review Daniel’s diet. His pediatrician wants a professional opinion about his meals and I want any suggestions she may have for weight gain. I typed this up today and am hoping for some good feedback soon. Thought other “real food tubie” friends might appreciate seeing what we do.

Daniel thin and Daniel squishy

Introduction to Daniel

Daniel is 6 years old, has Noonan Syndrome and arthrogryposis, both of which are associated with small stature and low weight curves. (Other diagnoses include low muscle tone, autism spectrum disorder, and developmental delay.) His biological parents include a very thin, petite mother and a very barrel chested, heavier father. Daniel has a feeding tube and cannot eat high VOLUME of food, so we give him a meal (pushed through his tube with a large syringe, called “bolus feeds”) 6 times per day.

Our concern is occasional weight loss. If we miss meals or if his snacks are low calorie, he drops weight, so his calorie needs are mildly difficult to meet on an average day and very challenging to meet if his gut slows down (either due to natural metabolism variability or due to pain/stress/medical treatment/anesthesia/etc.).

Physical size: 36-37” tall and 27-32 pounds. Looks much better at 30+ pounds than below 30.

He dropped a significant portion of his body weight when he could not eat sufficient volumes, due to his gut slowing down… which was related to high levels of stress and pain during 2 weeks of orthopedic treatment. (For example, he could only eat 1-4 fluid ounces per meal, including straight water, instead of his usual 4-6 fluid ounces per meal before throwing up.)

Usual schedule – assume ounces are fluid, not weight:
1. Breakfast (4-6 ounces food plus 2 ounces water)
2. Morning snack (4-6 ounces food plus 2 ounces water)
3. Lunch (~6 ounces food plus 2 ounces water)
4. Afternoon snack (4-6 ounces food plus 2 ounces water)
5. Dinner (~6 ounces food plus 2 ounces water)
6. Bedtime snack (4 ounces food plus 2 ounces water)

Total daily volume: 12 ounces water + 28-34 ounces food = 40-46 fluid ounces

Total daily fluid: Most of his blended foods can count as about 75% fluid, so 12 ounces + 21-25 ounces = 33-37 fluid ounces fluid daily.

Total daily calories: 28-34 ounces food x 30 calories/ounce = 840-1020 calories/day

Calorie goals: Daniel gains and maintains weight when he is able to eat everything I prepare… so over >1000 calories/day. More would be great, but he just can’t fit more volume so I have to be creative.

Blenderized-diet-related issues: Volume and consistency! My goal is to make his foods a minimum 30 calories per fluid ounce. It’s also a goal to have lots of carbohydrates in his diet. Both are difficult to do, since carbs are usually sticky/thick when blended and I have to add a lot of water to thin them down… which makes the volume much larger. Sugar and fat are easy to add, since oil is liquid and sugar dissolves into anything… but I try to get as much complex food in before topping up the calories with either food or sugar.

Diet restrictions: Nothing severe. He is mostly dairy free as he seems most comfortable that way.
I’ll type examples of usual meal recipes below.

Everything has to fit through that button/tube into his tummy.

Breakfast:
4-6 ounces of “Fruity Chocolate Oatmeal” plus 2 ounces of water.
Recipe is a changing-every-time combination of:
• Rice milk
• Rolled oats
• hemp seeds/chia seeds/ground flax/cacao powder
• nuts (walnuts/almonds/pecans/etc.)
• Some kind of fruit, dried or otherwise
• Some kind of sweetener (sugar, honey, homemade jam that failed to set, chocolate chips)
• Thinned to tube-feeding consistency with 100% juice (such as TreeTop Apple Juice)
30-70 calories per ounce. (I think 40 is a good average)

Lunch and Dinner
~6 fluid ounces of soup that is about 30 calories per ounce plus 2 ounces water. (~180 calories per meal)

Prepackaged options are:
Real Food Blends (any meal option) – about 30 calories/ounce
Nourish – about 40 calories/ounce

Cream of Carrot Soup
1 cups Olive oil 1920 – or butter
10 cups Sliced carrots 530
8 cups Chopped potato 928
4 cup Chopped onion 136
8 cups Chopped celery 128
3 cans Coconut milk 2250 – or 3 cups heavy whipping cream
9 cups Chicken broth 600
4 lb. Chicken breast 2992
4 tsp Ginger
4 tsp Curry Powder
4 tsp Salt
1/2 tsp Black Pepper
Total calories 9484 – 41 servings of one cup each – 230 calorie per 8 oz. (29 calories/oz.)

Blue Ribbon Chili
6 lbs. 80/20 Ground Beef 6918
4 cups Chopped onion 136
(3) 30 oz. cans Tomato Sauce 780
32 oz. Salsa 640
(8) 15.5 oz. cans beans (kidney or other) 3360
1/4 cup dried seaweed 13
2 tsp Garlic Salt
1/2 cup Chili Powder
Total calories 11847 – 48 servings of one cup each – 245 calories per 8 oz. (30 calories/oz.)

Tomato Soup
1 cup Olive Oil 1920 – or butter
4 cups Onions 136
3 cups Carrots 159
2 tsp Garlic 8
(7) 28 oz cans Diced Tomatoes 1470
2.5 lbs. Chicken 1870
6 cups Bone Broth 300
2 cans Coconut milk 1500 – or 4 cups heavy whipping cream
0.25 cup Dry seaweed 13
4 cups Chopped Spinach 28
2 cups Brown Rice (uncooked) 1368
1.5 Tbsp Dried Basil
1 Tbsp Italian Seasoning
1 Tbsp Salt
Total Calories 8798 – 36 servings of one cup each – 244 calories per 8 oz. (30 calories/oz.)

Corn Chowder
2 pounds Bacon, undrained 4400
7.5 pounds Russet potatoes 2685
4 cups Onions 136
9 cups Bone Broth 450
8 cans Creamed Corn (Kroger) 2520
4 cans Coconut Milk (Chaokoh) 3000 – or 8 cups half and half
4 cups Chopped Cabbage (or other veggie) 88
1/4 cup Dried Seaweed 13
2 1/2 Tbsp Salt
3 cups Water or broth as needed
Total calories 13292 – 48.5 servings of one cup each – 275 calories per 8 oz. (34 calories/oz.)

Creamy Chicken Rice Soup
3 cups Chopped Carrots – 156
3 cups Chopped Celery – 42
6 cups Chopped Cabbage – 126
3 cups Chopped Onion – 201
3 cups Spinach – 21
1 cup Olive Oil – 1920
12 cups water
12 cups Homemade Broth – 600
5 lbs. Chicken – 5425
3 cups Brown Rice – 1920
2 Tbsp Salt
1 tsp Pepper
1 Tbsp Parsley
1 tsp Rosemary
1 tsp Sage
4 cans Chaokoh Coconut Milk – 3000
Total calories 13411 – 46 servings of one cup each – 292 calories per 8 oz. (36.5 calories/oz.)

Creamy Chicken Rice Soup II
4 cups Chopped Carrots – 208
2 cups Chopped Celery – 28
4 cups Chopped Kale – 136
3 cups Chopped Onion – 201
3 cups Spinach – 21
1 cup Olive Oil – 1920
9 cups water
15 cups Homemade Broth – 750
5 lbs. Chicken – 5425
3 cups Quinoa (uncooked) – 2040
2 Tbsp Salt
1 tsp Pepper
1 Tbsp Parsley
1 tsp Rosemary
1 tsp Sage
4 cans Chaokoh Coconut Milk – 3000
Total calories 13729 – 43 servings of one cup each – 319 calories per 8 oz. (39.9 calories/oz.)

Snack foods

PBJ in Rice Milk – 150-210 calories per snack
• 1 slice bread or 3 Tbsp baby food cereal (bread has about 90 calories per slice vs. baby food cereal just 45 calories for this amount)
• 2 tsp homemade jam
• 2 tsp peanut butter
• Rice milk to desired consistency (1/3 cup?)
Blended leftovers – unknown caloric value
• Pancake and syrup and butter and rice milk
• Blueberry muffin and rice milk
• Banana and rice milk
• Low calorie options are applesauce based snack pouches… 70-110 calories per pouch
• Graham cracker, peanut butter, rice milk
• Baby food cereal, butter, brown sugar, rice milk (we call this “cookie in a cup”)

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