The Davis Family

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.

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.

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”)

I was thinking about suffering lately… of grief and loss and pain and brokenness and sorrow and sickness. You know me, I always fall asleep thinking of daisies and sparkles! I am not a glum person, nor like Eeyore, but I don’t find it easy to ignore or move on from suffering after I experience or witness it. So I think about it and consider what it means.

Scared and hurting.

I’ve decided that suffering is inherently bad. It represents brokenness and pain, neither of which I would expect to find in heaven. My greatest hope is that heaven is where the brokenness is mended and the sorrows overcome. God catches all of our tears… He knows and tenderly responds to our troubles. Suffering is the experience of… all the things hurt by sin.

It seems logical that we ought to try to avoid suffering. And yet, in some bizarre twist, my experience is that suffering is also… good. It’s confusing. How can something awful also be beautiful, or produce beauty? Like light is brightest when beside darkness, I wonder if beauty is more striking for it’s presence in the heart of pain? I’m not sure, but I have friends who have endured deep suffering… and they have become more accepting, more gracious, kinder, gentler, and more loving. Certainly, not everybody changes for the better with suffering, but change, we do.

While I was traveling across the country (again) to do (painful and scary) treatment with my little child who has already experienced too much suffering… and as we have gone through deep waters the last five or more years as a whole family, I have been impacted by suffering really personally. I have discovered that I highly value and appreciate people who have been through suffering as well. I and too many of my friends have had to give up control of our lives. Most of us cannot say of all our children:
“But my child is healthy, so that’s what matters.” Because many of our children aren’t healthy.
“My children are doing well in school.” Because many of our children struggle with learning.
“My child is happy/sweet/loving/kind.” Because many of our children are deeply impacted by trauma/neglect/etc.
“I anticipate my child being successful.” Because many of our children have mental health diagnoses.
“I expect my child to live a long life.” Because many children go home to Jesus before we’re ready.
“We are an involved part or leaders in the church/club/community activities.” Because many of us are impacted by challenging behaviors and partially homebound.

Not an easy day.

There is a lot lost. And in a place very different than the life I anticipated, Brian and I have decided to live. We’ve decided to thrive here. Here in the land of loss and brokenness, we’ve made our home.

I realized I am so glad for the changes suffering caused in myself as an individual that I am not sure I would change the hard parts of my own story if I could. And I have begun thinking about suffering as a positive thing. Positive! I no longer consider avoiding suffering to be a worthwhile goal. Though we flinch when we see it coming and we don’t bear it particularly well, we do wade into it with familiarity. It’s cold, aching pull on our hearts and bodies means our priorities are refined. Our Christian faith has been stripped to the bones. We survive if we can and extend a hand to others in the same flood of blood and tears when we can. And it comes and it goes. Oh, and the suffering of many of my friends is much deeper and more prolonged than anything we’ve endured… but suffering is not something that one ever compares for the sake of belittling. Suffering is measured by the one enduring, not the one observing. Be generous and gracious to all you meet.

You know something that grows really well in suffering? The fruit of the Spirit. Yeah, bitterness and trauma and hate and depression live in the valley of death too. But right there also grows kindness, gentleness, self control, patience, love, faithfulness, and even peace and joy… though my own peace and joy plants are often overrun with anxiety and depression.

You know what else thrives in suffering? Grace and mercy. The kind of grace and mercy that I must extend to myself when I have failed at everything that is or was important to me. There are specific things that I identify as being important to my belief in myself… belief that I’m successful and valuable as a human being, as a mother, as a wife, daughter, sister, friend, and community member. And the last few years of suffering has broken the majority of those expectations. Goals have been demolished to the realm of the impossible and unlikely. Those kinds of expectations that are beautiful and full of hope and fullness… expectations that can’t be taken away without a tremendous personal loss.

Some simple examples: As a wife, I haven’t been able to provide food for my family reliably. My husband has had to do a lot of food preparation.
I haven’t been able to overcome my depression and anxiety or the ways it makes me unavailable to my family in different ways at different times.
I haven’t been able to develop a deep or sincere relationship with my oldest son, I often cannot comfort him or understand him or help him.
It’s a very real concern that we may not be able to keep him home and safe as he grows up.
There is so much that I just can’t fix… and I tried to, until my own health declined seriously.

Losing control over my life and being carried along by God’s grace and the kindness of friends, neighbors, and strangers has changed me. You know how trees change shape when weather and geography shapes them? The dwarfed, weak, bony cliff-hanging trees. The trees overhanging water with their roots twisted back behind them as water cuts away at the roots that used to extend below before the water washed the soil away. The giant
lightning-struck oak trees with a cracked, craggy dead trunk towering above the still-green side branches. The leaning, arched and curved trunk of a tree growing out of a mass of undergrowth, stretching to reach some light. Beautiful trees, but broken trees. Some short-lived and some of great age and long-suffering. These are the trees I identify with now.

As night gives way to morning.. as a seed dies to give rise to growth… as labor pains give birth to life… so suffering and loss give birth to something beautiful. Acceptance. Grace.Mercy. Kindness.

There is pain. Oh, have mercy Lord, there is still pain and struggle and sorrow and the battle against bitterness in my heart is not over. But I can recognize many of the people, who, like me, have experienced or who are continuing to experience things that break them. There is something of grief laid over them and a glow of… a glow of something like love that is at the genuine heart of our souls. I am drawn to it like a hot stove on a cold winter night. I love it like a hearty stew when I haven’t eaten all day. I am refreshed by it like a big glass of fresh lemonade when the sun has made me weak with heat. It’s beautiful to me, like seeing somebody I miss until I’ve ached, standing at an open door with their arms wide open. Maybe it’s the grace and acceptance they extend toward me? Maybe it’s the way their priorities and efforts reflect the refining effect of suffering. I don’t know, but it makes for sweet encounters.

This suffering has refined my hope in Christ to something razor sharp.
My faith is where I stand fast. All that’s left is usually just a little seed. But a seed it remains.
My love is where I live, pouring out what I have… both for myself and those around me.
My hope… my hope is for when things will be made whole. I long for that. I’m depending on it, really. My hope is deferred.

And that’s how I think about suffering lately. I hate suffering. But I am glad for it. And I dread it. Oh, to live is Christ… my brother and Lord in suffering. And to die is gain. I’m looking forward to the good long hug and nap room I’m sure God has been setting up for us. And peaceful gardens. And hiking trails. And relationships mended. And hearts, minds, and bodies made whole.

That’s all. Just thinking about the kind of suffering that is unendurable. And the kinds that can be borne. And what it looks like to continue to live, what it looks like to retain hope.

Spending time at a special needs family camp… beauty abounded – both campers and staff.

I love this blog for tracking memories and processing my thoughts and experiences and sharing both struggles and triumphs. It’s a way to be real… both with myself and with friends about adoption and parenting and personal life and growth.

And I haven’t written in awhile, because life has been faster than I can process. And I wanted to write, but I keep getting bogged down by trying to think of how to “catch up.” But that’s not really possible, so I’m just going to dive in.

1. Daniel and I traveled back to Delaware to remove his surgical casts and get fitted for braces.
2. Daniel’s personal and physical growth and health triumphs and struggles
3. Anna and having an almost-teenager
4. Maggie and her interests
5. Jordan’s development and life
6. Carolyn’s six years old!
7. Home… the care and keeping of our property
8. Self care – my health, strength, and goals
9. Marriage and how to make life work with a family as we are now
10. Brian and hiking and on being a good husband

I definitely can’t talk about all that.

Let’s just summarize based on what has impacted me most deeply and by what is appropriate to share. (My girls don’t appreciate me sharing certain details of their lives and I respect that.)

This Delaware trip was really hard. It was short, but hard. Day 1, we traveled… waking at 3:45am and heading to the airport… two airplanes and a drive to the Ronald McDonald House. It’s exhausting. The hospital is half a mile from the Ronald McDonald house and Daniel screams (fairly predictably) in cars, so I walk the distance most of the time with Daniel in a wagon.

Arriving in Delaware…

Day 2: We walk (ooooooh, east coast humidity is awful!) and get his casts off (yay!!!) and I get to see where his incisions were and what his feet look like now. We walk back and bathe and bathe and bathe those yucky legs and feet until six weeks of nastiness are soaked and scrubbed off and sensitivity is halved from “intense” to “touchy.” Walk back and get braces fitted…. and ajusted…. and changed again… and Daniel takes his first steps with his new feet. The walk back to the RMH was horrible… we were both tired and he was in so much pain he couldn’t move or speak and he avoids telling me where pain is, because he thinks it will make it worse. So dinner was with us both in tears and I took off the tall braces and went back to the little ones. And his foot didn’t stay in the braces properly, but that was okay, because we had another day for adjustments.

Dr. Nichols taking off the surgical tape and snipping sutures… getting our first look.

We can see the sole of his clubbed foot from below!!!!!

Very first steps on his new feet with physical therapist Reenee!

Day 3: Walk to hospital at 7am (4am home time) to start process to remake braces. Walk back. Walk to hospital again for a really great physical therapy appointment and doctor appointment where we all admire his feet and are proud of his strength and saw Daniel walk a good LONG distance on his new feet with just his short braces on. Also figured out why the other braces were hurting. Walked back. Walked back to hospital AGAIN to e fitted into new braces – took some time for adjustments and so forth. LIke the new braces much better. Pray they are gonna work out. Walk back again. So tired.

He walked a long ways!

Day 4: Pack up, clean up, clean room (RMH, we do our own room cleaning), make everything fit into suitcases and head to airport. Flight is delayed. Cry. Flight is delayed more. Cry more. Flight is canceled. I’m stuck at the airport from breakfast until dinnertime… going nowhere. Finally get on a flight that will get me halfway home. Land. All flights home are canceled. We sleep in the airport and I cry. I was really quite fragile and struggled more than I was okay with. Does that make sense? This was all intense and my endurance was shot. A flight attendant took pity on us and overbooked a flight so that we could get home before lunch the next day instead of evening the next day. I had no more food and no more diapers for Daniel. People were very kind. But I was still stuck. Made it home. Never want to leave again.

Ahhh… sleeping on a hard floor with airport announcements blaring at irregular intervals. Praying Daniel doesn’t wake and run away while I close my eyes. Wanting and needing to be home.

Pictures

I hate the KAFOs. I mean, they make the nerdy part of me thrilled and they are incredibly practical from a functional standpoint. But I don’t like them. I haven’t taken time to analyze or articulate why. But after all that work (and i haven’t paid the bill yet!), we haven’t used them once since coming home. Daniel’s knees don’t hardly bend still, and maybe that’s why it’s worked out. He didn’t take long to gain the strength to hold himself vertically and supported for significant periods of time. His walking speed has gotten faster and more coordinated and more upright. Brian just built him a walker with wheels out of PVC so that he can walk more while we’re at camp next week (lots and lots of asphalt areas), but we felt we had to “hurry and build it before he walks without it.” That’s a pretty incredible feeling. I can’t believe that he’s so close to independent walking!!! Yesterday, he was walking while holding my fingers and he barely leaned on them. I’m stoked.

Charging around the house…

Carrying huge amounts of dirt inside. This from a boy who was too overwhelmed to play in the grass last summer.

Daniel has dropped a lot of weight. He went from 30 pounds to 27. He couldn’t eat much during his treatment and after surgery and he apparently needs every calorie we feed him. That’s frustrating for me. He’s mostly back to normal now (what he can eat) but it still fluctuates with stress. Also, he has athletes foot and moisture isseus in his AFOs that I’m learning to manage.
I want to make his back look like this picture from last November….

Look…. no ribs showing!

Right after getting home, Brian packed up and got to spend a couple days enjoying time with my brother and his good friends for a sort of pseudo bachelor’s party weekend. SO GLAD he got to go. But I am physically and emotionally spent. Adrenal fatigue and all that. Brian and i work to take turns having periods of respite, but when we’re BOTH tired, it’s hard. Also – his time off of work is used up except for what we budgeted for two summer holidays, so I can’t call him home when I’m having a day where I struggle to get out of bed and care for the house and kids. Thankfully, things are going pretty well here, but whew, it’s a good thing!

Hiking was part of the fun!

Speaking of taking care of things, we hired my dad’s business to do some work around the property that will make tending sections of our property much less labor intensive. He and Austin did a really fantastic job and it feels GOOD to see some work done. Also, Brian and I have prioritized my personal health needs to the top of the stack and I’ve been digging in the last two weeks, pursuing a better diet and exercise. Intense physical exercise is really good for my mental and emotional health and it’s critically needed for everyday care of my boys as well, who need lots of physical support. Besides that, I’d like to make it to see and play with my grandchildren, and I wasn’t on track to do that. So sugar is mostly cut out of my diet and 3x/week, I’m participating in a bootcamp program at a Crossfit gym. Brian and i miss our evenings together those three days, but it had to be done.

Carrie had a tooth pulled, Anna is cooking a lot, all three girls rode on Grandpa’s truck for the 4th of July parade in Molalla, I’m going to the grocery weekly, Daniel is playing in the dirt a TON, and both Brian and the girls are taking an interest in learning how to backpack. Pediatrician and other appointments (dental, cardiology, nephrology, endocrinology, opthamology, phsychiatric) appointments are scheduled coming up in the next few months… mostly Daniel for those specialists. Brian and the girls went to his grandmother’s funeral. We’ve attended English Country Dances and I’ve been trying to prep for the next school year. My hands have been too swollen (or fat?) for my wedding bands in the evening, so Brian and I designed a ring that we ordered on etsy that I love. It’s symbolic for things he and I have been thinking through.

I’m sweaty and tired and feeling good!

The English Country Dance scene…

Our pediatrician has a nice student shadowing her right now. Think he’s going to make a good pediatrician from first impressions.

We love our pediatrician!

Parade!!!

<3

Daughter cooking… son standing. Couldn’t ask for more!

Carrie was awesome getting her tooth pulled.

Hiking!

Faith. Hope Love. All other things will pass away, but those three will remain.
Today, those look like specific things to me.
Faith – Stand fast. I will not let this be taken from me.
Hope – Made whole. One day, all the broken things will be made whole.
Love – Poured out. Every day, I pour out love for my children, my husband, and myself. Every day, I pray God will give me love to pour.