The Davis Family

So, I’ve been thinking a lot about heaven lately. If you read my musings here much, you know I dwell on heavy subjects of suffering quite often… and I don’t do well if I didn’t spend time considering heaven also.

So…. there are lots of opinions about heaven and lots of good study and literature about heaven. But I’m just going to share a few things I think about. Because this is my blog and I get to do that.

First – people who have died are not in heaven now. Heaven…. like with a capital “H” is on new earth and is an actual physical place. There is a place we go when we die while we wait for Heaven. Catholics call it purgatory, but I’m not Catholic. Protestants usually call it Intermediate Heaven, which is weird. Anyway, it’s where we wait. And we know that the martyrs are watching events unfold and talking to God about it, asking when He will intervene. I see no reason why I shouldn’t believe that all the saints can see us and still care about us.

Something cool about that – they don’t have the ache and pain associated with suffering… they have our Lord right by their side and no shred of doubt about whether good or evil wins. They know.
Something else cool about that – when I think about those that have died who I miss very much… I see no reason why I can’t talk to them. It helps a little with the loss and pain of their absence here.

Second – I was reading Isaiah 59-62. Roughly. I started skipping around after a bit. But I noticed four things that we will have once we are in Heaven – the eternal Heaven…. with the new Jerusalem and the new heaven and new earth and all that.

1. Babies. Lots of babies.
2. Cooking.
3. Gardening and farming.
4. Building.
5. Parties!
6. Commerce.
7. Peace

Verses:

1. Isaiah 60:22a The smallest family will become a thousand people, and the tiniest group will become a mighty nation.
2. Isaiah 62:9b Within the courtyards of the Temple, you yourselves will drink the wine you have pressed.
3. Isaiah 62:8b-9a Never again will foreign warriors come and take away your grain and new wine. You raised the grain, and you will eat it, praising the Lord.
4. Isaiah 61:4 They will rebuild the ancient ruins, repairing cities destroyed long ago. They will revive them, though they have been deserted for many generations.
5. I couldn’t find it again… probably was just reading about being dressed like a bridegroom. But… weddings are big parties and that’s happening!
6. Lots of talking about other nations bringing gifts to Jerusalem…. didn’t find more about that here.
8. Isaiah 60:18 Violence will disappear from your land: the desolation and destruction of war will end.

Anyway. I’m happy about the babies, cooking and gardening.

Now, for a personal values statement:

When somebody asks for help, I like to have something to offer. I don’t carry cash and since the majority of the people asking are on corners that I’m driving by… I don’t know them individually and don’t have time to stop and meet them. It makes me uncomfortable to hand cash out with zero control over how it’s used, though I don’t think it’s bad to do. Anyway, our family has been creating bags of useful things that we can keep in our car (and a few bus passes I keep in my wallet) that we can give away that are hopefully a blessing. They are given with love and appreciation for others as fellow citizens of this planet, and I hope that our respect is conveyed.

Over the years, what we put in the bags has changed, mostly based on how much $$ I could afford and how often I gave them away. Right now, I’m making bags that cost $20-$25 each to prepare and they are the most expensive collections I’ve ever made since I often have the opportunity to hand them out. My backup plan is generally one-day passes to the bus system or $5 gift cards to Walmart. Those are nice, because they fit in my purse too.

I’m pretty pleased with these bags – both the type and quality of the items inside feel like I’m giving something more valuable than some other efforts in the past.

Here’s my current list for a single bag. I make about 10 at a time to save with bulk purchases:
1 – Reusable grocery bag (something that looks/feels sturdy from the grocery store) – $1.50
3 – Bic Disposable razors – $1.20
1 – Batiste Dry Shampoo – $5 (Target and the Dollar Tree sometimes carry travel size!)
1 – Abundant Life New Testament – $2
1 – White crew socks – $.85
1 – $5 gift card for Walmart or Kroger or McDonald’s – $5
10+ – Menstrual pads – ideally overnight and thin… I’ll divide this up and put in a sandwich bag – $1.80
10 – Laundry pods – $1.20 (I will take out of large package and put into sandwich bags)
2 – Bags of nuts – $.65
3 – Packs of crackers – $.75
1 – Pack of Bandaids – $1 from Dollar Tree
1 – Toothbrush – $1 from Dollar Tree
1 – Antibiotic ointment – $1 from Dollar Tree
1 – Deodorant – $1 from Dollar Tree
1 – Water bottle – $.30 from local grocery bulk package
1 – Packet of printed info about local homeless missions from the local homeless ministry pages.

My wallet is empty too, so I’ll get a few more $5 gift cards or bus passes to carry for when I’m not in my car. Toothpaste is also a good idea. Probably, there are many more good ideas. I’d welcome hearing from you. Sunscreen during the summer and blankets during the winter…. though those are bulky, sometimes there are lightweight, but warm small blankets for under $5 when they’re on sale around Christmas. Protein bars and ziploc bags and shaving cream and cleaning wipes are good.

If you have ideas or recommendations, let me know! I want to make my dollar stretch as far as it can, getting things people actually want.

I’m working on making a database of all of Daniel’s medical information on Google Drive so I can access it anywhere. It’s been a headache to try and make space and sort all the paper copies of all his specialists and the different appointments. I’m excited about this maybe helping me out.

When I scanned in Daniel’s Bulgarian vaccination records, I could smell cigarette smoke. SO MUCH cigarette smoke in Bulgaria! Reading the “discharge protocol” for Daniel and the place where I signed for “parent taking custody” …
…
…
That’s powerful stuff.

I’m looking up a Bible study that Anna can do. Some friends suggested Seamless, so I’m checking that out.

I’m looking up good audiobooks… got a lot of good-sounding suggestions from facebook friends…. haven’t made a list or checked them out yet.

Saw a meme that represented the mutual respect doctors and patients need for each other:
Doctor: “Don’t confuse your google search with my 6 years at medical school.”
Patient: “Don’t confuse the 1 hour lecture you had on my condition with my 20 years of living with it.”

Anna’s new dog poops in the house a lot. He’ll learn and Anna takes him outside a lot, but when he poops in Jordan’s play room and we don’t notice… oy vey.

Daniel has requested to sit on the potty twice and both times went! Took some waiting, but he did it.

Speaking of Daniel – he yells at me a lot. Calm down, dude. Time out is for crossing your arms and grumbling, not thrashing and screaming nonsense. Somebody needs to teach him how to do this so I don’t go crazy. Nobody? Too bad. 🙂

Tension headaches like me. I started a 13 week core program and I hope that it resolves some significant amount of neck and therefore headache pain.

We took Daniel in to a nephrologist to see if any of his genetic markers related to kidney function are causing any problems. We did testing ahead of time, but when we showed up, she hadn’t reviewed his genetic testing, took texts on her phone while we were talking, and had no answers. In the end, I sent a complaint to Doernbecher for the wasted appointment. And then she called me to tell me why she had done nothing wrong! It was uncomfortable and… umm… not patient-centric. Anyway, she had all kinds of concerns and said we should see a nephrologist specialist at the Mayo Clinic in Minnesota. Yeah, not what I wanted to hear. I contacted his genetics team recently to update them and to ask for a referral for something unrelated (endocrinology) and let them know about the nephrologist and that I’d find a new one. They reviewed his labs and said that it looks pretty clear to them that he is at a higher risk for kidney stones and to keep him extra hydrated to reduce that risk. And didn’t suggest any follow up at all. I’m still planning on following up with a new nephrologist but….. yeah. The saga continues!

Our DME provider that sent us tube-feeding supplies for Daniel those first few months misquoted us… collected bills… changed the bills… changed the bills again – increasing from an expected $250 or so to closer to $1250. We endured lots of unpleasant phone calls, emails and getting shuffled all around. Anyway, they finally waived the patient portion and that’s a huge relief. The supplies these are in regard to were worth about…. $150 if I had bought them privately. I think. I haven’t done the math. But tape and cheap syringes aren’t that much!!!! So ridiculous. Happy, happy, happy that it’s finally done! We’re ordering all his tube feed supplies privately through facebook groups and ebay now. Cheaper and more direct.

Facebook post of the day:
Problem/Solution
Problem: Brian left early and works late. Typically, I barely make it (energy/emotionally/mentally) through a work day. I love Brian getting home, because he is AWESOME and makes dinner and bedtime so easy on me. How can I make today better?
Solution: Cancel all book schoolwork. Task Anna with making cookies. Agree with Maggie baking something she calls Quick After-Battle Triple Chocolate Cake that is in the back of a book she read that involves dragons, battles, and the Frying Pan of Doom. Tell them they’ll have to wash dishes. Hope for the best! Focus on me and the boys and let the children run free in the kitchen. That’s right – no supervision. They’re good cooks.
p.s. If anything epic happens, disaster or success or some mix of the two – I will post photos. Unless there is mostly disaster. At that point, please send pre-made cookies and ice cream and take my three girls away for a couple hours to reduce the size of the calamity.

follow-up:
Huffing, yelling and stomping from one girl-child. Oooh, followed by a door slam. Possibly will have to follow up with that. Jordan’s banging on walls and Daniel is singing. I need a shower. Further update as situation warrants.

next:
Made it to eleven-hundred hours and it only felt like ten-hundred hours passed. No children crying and cookies were successful except batch was too small and they’ll be gone by lunch. Dangerous cake making occurring in kitchen. Shower still unattempted, but weight of grease in hair presses this task to high priority. Oldest man-child is hungry and bored and youngest man child is laughing about throwing legos. Note to self: Put on shoes. Husband is a four hour drive away. Music has been banned. The day progresses.

afternoon:
Checking in at whatever hundred hours 3:30 pm is. All humans are still living and the chocolate cake is good. Fatigue is high, but only in the mothership. All child-directed ships are at full throttle. I tried for a nap, but either Jordan or Daniel has me back up again. Stacks of paperwork uploaded into Google Drive for Daniel’s medical record-keeping. I can see the light at the end of that tunne. If only I could see the light at the end of the Brian’s-at-work tunnel. No respite provider for a month for Jordan and the work-weeks are longer than they even were before we ever had respite. Maybe. ETA of my knight in shining flannel…. about 7pm. 210 minutes. I can do this.

Found these x-rays to be interesting as I was populating google drive with all his medical records.

Jordan in his pod swing with his face smooshed against the back, spinning like he likes…..

Quote from Daniel’s doctor’s notes from his first orthopedic appointment in January, 2018:
“We had a lengthy discussion with the patient’s mother regarding future implications and treatment alternatives. She is especially interested that he learn to walk, and we have discussed that, although we share her desire for him to walk, it is likely that ultimately he will require wheeled mobility for independence.”
Soooooooo – I still think he’s going to want/need a wheelchair sometimes, but I think he’s already exceeded expectations with regard to learning to walk! We have not done physical therapy formally, but have given him every opportunity to move and be successful within his home. I am so excited for how it’s going!!!

A good friend’s (small town) church is outgrowing their building and designing a new one. We want to share our insight into how to make a church more welcoming to those of us with special needs, so we’re going to try and distill our impressions and thoughts into something coherent to send them. It’s nice to have them welcome input.

New day here – how did today get here without me havinga plan for it?
Solution: Maggie and Carolyn are looking through the links and videos I’ve saved over the last two years in a “homeschool” folder. They’ve done typing, watched how Harry Potter movies are made and I think they’re onto a nature video.

Cool mom move: I spent $20 on a huge bucket of bubble gum and a huge pack of eclipse chewing gum. Sensory solution for sensory crazies on bookwork days. Positive sensory input in stressful moments. Playful and desireable (and $.03 per piece) solution for relationally challenging moments. Now…. I just have to stop chewing so much of it myself so it lasts awhile. 😀

Noticed something with Daniel that explains a lot about his speech articulation and his severe oral aversion. He cannot move his tongue hardly! He can stick it out. Then he tried to copy me moving it to one corner of my mouth, but it hardly moved. Same with the other side. He cannot tip the front of his tongue up and cannot touch his top lip with his tongue unless he closes his mouth on it! I knew he had coordination deficits in his mouth but…. that’s pretty complete! So we’re playing tongue games in the selfie screen of the cell phone sometimes. I’m hoping that just USING his tongue will find that he has physical capability there. Sometime we’ll get a speech therapist on board – I think it’d be helpful. But the fear levels need to drop a bit more first, I think, so it doesn’t backfire.

Jordan was mostly awake and laughing hysterically or crying from about 3AM on last night. Not his happy giggle – his “something is bothering me” giggle. He’s still not himself this morning. I gave him some cold medicine in hopes of addressing whatever is hurting or uncomfortable. Headache? Stuffy nose? Aching something? School is going to be difficult this morning, so I’m taking a moment of peace to set up school for the girls. Something that involves the sunshine and them going outside. If you think of us – pray for Jordan and for the rest of us too!

This post is a good week long string of thoughts now. Posting it and moving on! This is for you, Mom – not on facebook!

I have a large kitchen with lots of great counters and I love it! But just because it’s big, doesn’t mean that I can keep it clean. Sometimes I walk through the kitchen and feel overwhelmed by the mess. Last week, I walked through and laughed about it, so I took pictures to share.

So for some inexplicable reason, this time the disaster made me smile instead of groan. Lots of life in this house!

It’s been too long since I’ve written. I’ve felt a blog post coming on for awhile and I hope I get to write it now. I want to talk about the kids and how awesome they are! I am often pretty real and open about the struggles… but today is a day to share updates and brags of mostly the bragging sort!

Anna – age 11 and 11/12ths – 6th grade – Almost as tall as me – People say she looks like me (and I take that as a compliment):

Anna is serious in her interests and creative in her pursuits. She loves to make gifts to give away and she appreciates beauty. She is naturally helpful and very competent. She’s anxious about making mistakes and doesn’t like trying new things, but once she gets started, she takes ownership of the work/play and enters in completely. She has preteen sass and sometimes grouchy moods and resists parental teasing when we try to lighten the mood. So I think she’s following in the footsteps of her parents.
Anna loves her painting class… partly because her efforts hae been successful and partly because the teacher (Ms. Debbie!) is such a gentle soul and that is music to Anna’s soul. We’ve taken this school year off of ballet and about a month ago she finally started missing it. I’m optimistic about her getting to attend next year, though I haven’t figured out the practicality of doing so. She has several special friends and loves spending time with them and trading emails. We stopped attending church for now to rest and stay together as a family (special needs and church were not working out) and she really misses her Middle School youth group.
Anna got a puppy in February as an early (April) birthday gift! She just started a 6 week obedience class and she’s really impressed me with how hard she’s working to take care of him…. brushing, toileting, caring for him at night, etc. He’ll turn a year old in April too, so it’s kind of fun that they share a birthday.

Jordan – age 9 – 4th grade – nonverbal including not signing, but has a lot to say:
Jordan hanging out with me while Carolyn reads to me for school:

Jordan is feeling the almost-ten-year-old-itis and is growing bored of the long winter. He has a daily routine that includes lots of Signing Time videos, frequent snack and meal and toilet breaks, sitting by my space heater by my desk and playing with music-making toys… but he’s growing bored and restless and has discovered several clever (if irritating) ways to entertain himself: Banging on stuff with his hands, elbows and feet is his go-to…. lots of banging and rattling around. Also, screeching. REALLY LOUD screeching. AGH! Then there’s chewing on his thumb… this is my least favorite, because it’s harming his body as the thumb nail is breaking up and the callous is enormous. I’ll take your nail-biters and raise you one thumb-gnawer. (laughs)
The last weeks have been sunny if COLD, so Jordan and I have gone for a short walk up and down our road many afternoons. He loves the first lap…. running ahead of me with a true (if wacky) running gait! It’s great to see him so strong! He’s out of shape, though, so he gets pretty winded. Then when I turn him around for another lap, he fights me… not sure if it’s because he actually wants to be done or if it’s just the autism “but we’re back at the house so we’re SUPPOSED to go inside” thought process. But the second lap is usually much slower. Funny: one day was cold and super windy. Jordan drools a little bit usually, but with that icy wind??? He was like a St. Bernard with water coming out eyes, nose and mouth and blowing behind him. Cracked me up and I almost took a picture of his coat decorated with stringy wet spots!
He thinks it’s really funny to lie down on his back and kick and giggle! I have no idea why – he just came up with it one day. It’s a little weird when he tries that while we’re walking, but thankfully, he’ll get up when I ask him. He loves vanilla yogurt and has a favorite rope that he likes to dangle. His favorite music toys are the ones that drive adults insane with the tinny repetitious sounds. I can sing all the songs that all of his toys play. We finally found a way to give him toys so that we’re safe from flying plastic toys! We got some produce bags (the nylon kind?) and hook those onto the eye hook we have in his play room. He can still see into the bag and push the buttons, but they stay put!

Maggie – Age 9 – 3rd grade – excited by life and doesn’t like her picture on social media:

Maggie is a bright star in our family. She finds delight in all kinds of activities and is proficient at creating situations where peals or shrieks of glee burst out. She is “hot or cold” and drops rapidly into emotional holes, but she lets us love on her and help her back out again. She’s incredibly forgiving and compassionate. You can hear Maggie watching a funny movie or reading Garfield (again!) by the intermittent chuckling and squealing. She’s physically agile and strong, enjoying climbing and biking and running and swimming and many things active. She loves outdoor survival themed activities and I find myself eager to see where her mind takes her.
Maggie is doing well in school overall. She sometimes struggles to get traction on an idea or to “get started” but once she gets the idea, she often launches much further into a project than even the books suggested. She adapts and improves school to fit her impressive imagination. While she struggles to get as much volume of schoolwork (or anything) done, because she moves at her own pace, she doesn’t fall much behind in her understanding. I’m learning to adapt my teaching to meet her pace. I don’t feel she’s struggling so much because the subject matter is too advanced for her, but because we haven’t found the best way to connect her learning style with the material. I think she would really struggle in a public classroom environment… but I think she is going to be somebody who finds an interest and takes it on to well-deserved acclaim and success. Perhaps she will be some type of scientist or engineer? Or maybe she will be an adrenaline-loving Mother Theresa. It’s hard to say. But that’s Maggie.
Maggie has a few friends, though no close buddies yet and she enjoys days and weeks long imagination games with Carolyn and sometimes Anna. There are always props all over the house that are left over from their shenanigans. She started hugging again and I’ve been loving the snuggles. If I’m tired or sad, Maggie is the one who usually comes over and gives me a hug and tells me I’m a good mom. When I lose my marbles and Maggie catches the brunt of it (which isn’t terribly surprising, as Maggie is the source of a large portion of unexplainable phenomena in our home), she’s quick to forgive and willing to work with me on how we can both do better the next time. Personally, I think every home needs a Maggie.

Carolyn – age 6 1/2 – Kindergarten/1st grade – never met a stranger she couldn’t talk with:

Carrie is the extrovert of the family. She’s generally self confident and up to trying anything. Except for things that she thinks she shouldn’t do, because it’s what her sisters don’t do. Like foods she doesn’t like, because they don’t. If anybody tells a story about something they did or saw, she immediately tells a story where she did/saw/heard that too. It’s cute, because until recently, she had no self awareness about what she was doing. Still don’t have much, but it’s coming. I hope it doesn’t spoil her self confidence, because I love her! Carolyn can make her own sandwiches, toast and just learned to fry eggs. She can read chapter books but prefers comic books. She’s starting to figure out how to tell jokes that make sense and I’m really sad about not having a baby any more.
Let’s see. She’s doing first grade schoolwork, but I’m not pushing it as she’s a bit young for a first grader. It’s fun having a kid that doesn’t need loads and loads of help to do the “typical” tasks. She potty trained herself when she was two and a half and just generally decides when and what she’s going to learn. I am glad that she’s the baby of the family, because she’d probably be hard to live with as a firstborn! She loves her cuddles and a dream evening for her would be to be wrapped up in the same blanket as me, on my lap and in my arms and possibly sharing the same skin for a few hours. She’s funny and playful and only sometimes sneaks the gum off my desk or puts holes in the candle wax. (Usually, the candle digging is Maggie and the gum thief would be Anna.)

Daniel – age 5 11/12ths – preschool – alternating between sweet and bonded and holy terror:

Daniel is in the throes of learning about trust. So basically, he’s in full blown threenagerhood, but with the adoption story twist. He’s learned most of his capital letters and a large smattering of phrases to go with each letter… “D is for Daniel. D, dinosaur. Rawr!” etc. He knows some of the lower case letters and can count to 10 and sometimes above. I’m getting the feeling that he’s getting close to working on letter and drawing things… he hasn’t had the interest before. Honestly, he doesn’t now, but he’s starting to look at his sisters doing their school and I’m hoping that he wants to do some himself soon. His vocabulary is vast. His speech is hard to understand and he often talks to himself with gibberish or repeating things he’s processing, but he speaks to communicate and is the cutest little boy when he’s being silly.
I went to a lot of effort to procure some gym wedges for Daniel, so that he could scoot to the top, turn around to let his legs drop down, and then pull to standing without my help. Well…. that sparked some blazes in his brain and he decided to learn how to stand up in many places in the house! He can stand up in his bedroom (using his mattress and his low shelf) and in my bedroom (using the recliner) and I’ve found him standing in a few other places without knowhing how he did it! I predict that he’ll learn how to get to standing in the middle of a room all on his own when he’s ready. (That will take making a tripod of his legs and arms and then some top notch core muscles. He can’t balance without holding onto things yet, but he’s far stronger and balanced than just a few months ago. He spends a lot of time on his feet!
Daniel is very fragile emotionally. He will spend minutes, hours and sometimes even days (yay!) with a mostly calm temperament and be able to be reasoned with. But most of the time, if he has a need or a want or a hurt or something, he’ll flip straight to fight or flight and scream and hit and pinch and generally be unavailable until we tease him out of it, wait him out of it, or restrain him until he’s “back online.” Considering that he spent the entirety of his first 4 1/2 years either being ignored or mistreated, he’s doing awesome! Breaks my heart to see his broken, but he’s rocking this new life. Family looks good on him.

First few days standing up:

This week standing up:

Same day in his room:

Walking out of his room and climbing onto the chair!

So there you go! There’s the kids in a nutshell.

Brian and I are in a season of being overwhelmed, but we’re holding steady here. We’re both spending the extra energy we have on figuring out how to become healthier individuals. We don’t get all the things done and the home projects and medical work and etc. etc. are just endless and basically insurmountable, but we do one thing at a time and a suprising amount is accomplished. I’m dealing with a hip injury that I woke up with, crocheting, knitting, visiting friends and just had a season of walking a lot. Brian is doing well at his work, coding for his personal time and we both are enjoying some single serve brownie-in-a-mug treats that my sister sent me, because she wanted to bless me. I’m blessed, sister! Thank you!

Now for pictures. I’m going to see if I can load these on. Then I’m done. Forever and ever amen. Or something like that.

One of many medical appointments for Daniel: