Trailing

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.

Daniel did have a few smiles at the dentist, but was more scared than comfortable! Here tehy are with their prizes. No cavities!

Daniel chose the pack of finger lights from the dentist prize shelf and put them on his fingers.

We went in the sensory friendly dentist room to put Daniel more at ease. I also brought Carolyn, who LOVES the dentist in order to help him. She’s holding the long light strands. The sounds and seeing Carolyn getting worked on freaked Daniel out a bit, but it was not a bust.

Such a cute hygenist photo bomb!

Daniel thought that the light strands in the dentist office were awesome. His black eye is healing, but still pretty magnificent.

This whole bundle of light strands is made for holding while at the dentist!!!!

Anna at her dog training class!

Captain learns quickly.

I made a washcloth while Anna was in the dog class.

Will pose for pepperoni

Pepperoni, please?

Pleeeeeeeease pepperoni?

Looks like a happy place to me!

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

Daniel the day we got home from Bulgaria…. poop in your intestines is not supposed to show up like that. So glad he’s thoroughly hydrated now!

Before Daniel got his feeding tube, we put contrast juice in his stomach and watched it go into his small intestine to check for malrotation. It was cool. 🙂

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!!!

Daniel has done this several times in the middle of rooms!!!!! He’s going to be able to stand up in the middle of a room!??!! WOW. (He hasn’t stood up in the middle of a room yet, but this looks like once he’s stronger and has better balance… he just might!

At the physical therapy clinic getting an annual evaluation to help us order equipment. This time last year, we were discussing ordering a stander to hold him up to stand. This year, we’re talking about how to help him walk! (We never got the stander) – I apologize to the PT for the not super flattering photo of her face/expression here… so I won’t name her, though I like her.

He tends to stand with his hips out behind – this is very upright for him. We’re discussing why he stands that way and how to help him become more upright.

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!

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Kitchen

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.

This is where all the rags go when they’re wet or gooey or otherwise dirty.

The garbage can is small and we keep it on the counter where dogs and young children don’t dump it. Between two boys in diapers (Ages almost 6 and almost 10), it is usually full.

Behind the sink I found two different science projects waiting to be reviewed.

My kids cook their own lunches… that’s where the noodles came from. They also load the dishwasher. Brian and I are in charge of handwashing. Which does not get done daily.

These grapes have been on the counter too long. They’re spoiling already.

I’m thawing out Jordan and Daniel’s soup for the next day…. it’s carrot soup and tomato soup… see the nifty letters I wrote on the yogurt tubs?

Beetles… both the living and the dead. On my kitchen counter.

I decided to propagate my Christmas Cactus and some of Brian’s Aloe. In my nice pyrex pan. I don’t know what I was thinking. I hope it washes.

This is the counter where we put dishes that are waiting to be washed.

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

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Brags

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):

My big girl with her little dog!

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:

Playing in the dirt!


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:

Pretty girl!

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:

Funny thing Daniel said today when looking out the window: “Turn off snow!” It’s not sticking, but apparently he wanted me to make it stop coming down.

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.

Plop!

Walking outside and Daniel trying to figure out how to use the Wild Thing.

It’s not very easy to control and he’s intimidated by it, but he agreed to try with the promise of playing in the dirt afterward.

I went to change Daniel’s diaper and it was mostly dry…. asked if he wanted to pee in his diaper or the potty. He said, “potty,” so we spent the next half hour singing songs and sitting on the potty!

Jordan hung out with us. I don’t know if you can see the mottled skin of his arm but yes, my bathroom is really cold.

It was actually nice to hang out together! And Daniel did indeed pee in the potty!

I was tired. So school today is science in the form of Myth Busters!

How Maggie watches movies.

I have a pretty Christmas Cactus that we started from a branch that broke off my uncle and Grandma’s plant. I decided to make more, because something surviving makes me happy.

You can’t see the sweat and the foaming and the spitting up that was moments before…. it’s always a relief when the panic recedes. Selfie silliness to the rescue of one little boy.

Jordan’s playroom that is starting to show the signs of Jordan’s increased size and strength and general “drumminess.”

Content.

Jordan’s poor thumb.

Homeschooling. True story: Maggie and Carolyn wear the same clothes for day and night for 2-3 days in a row until I make them change.

Run!!!!

I did a “What do I think of when I think of our family” project. I have it hanging in my bedroom now.

Brian did one too. He can’t read cursive and thought Red said Real. So just pretend it says that. <3

Look! I made a blanket! It’s wool and feels so nice. I knit this in the deep of some serious depression. I claimed each stitch with hope.

He’s more photogenic than he used to be!

Lying down and cracking himself up.

There go the feet! Kick!

Jordan spends a little bit of almost every day in front of the space heater that is beside my desk.

Reading the letters in Carolyn’s handwriting book.


Silly and sweet moment.

Now that Daniel can get up on his own, he can open doors! Big deal! He can also get into the toilet. Also a big deal, but not awesome.

Daniel says, “Come here doggy! Daniel pet! Daniel pet! Hi Captain!”

He’s waiting for Anna.

He’s a pretty boy!! His hair will grow long if not trimmed.

Captain Cook is almost 9 pounds, a Havanese, is incredibly soft, and loves Anna more than life itself. He will tolerate the rest of us, but he loves his Anna.

Nobody likes the new dog.

Anna took this photo out our window!

This little girl can sit cross-legged on the ball in the middle of the room while carrying on a conversation.

This thing is called a Cozy Canoe and it is super comfy to squish into. I got it for Jordan, but everybody enjoys it.

Ruby and Benny the afternoon after they ran away and scared me!

They were soooooo tired after their long walk!

Anna has been cooking a lot since she finished a big chunk of her schoolwork for the year already. She’s made bread, biscuits, cornbread… and these frosted brownies with graham cracker crumbs!

Maggie has several books she’s loving and checks them out from the library to read on my kindle!

The cat was SOOOOO happy to be inside that she was just hanging in Brian’s hand, kneading the air. Brian dropped her on the bed next to him and she just kept on kneading. Such a silly cat.

After dropping the cat.

So silly.

My cutie and I holding… umm… a fur grandbaby? lol

It was a really sweet moment when he relaxed against me.

Jordan loves sitting like this, with my legs over the top of his legs.

Wasn’t enough for this day, though!

That’s right – you’re looking at a bonified washrag-maker extraordinaire!

Jordan loves the helmet we got him to protect his head when he’s upset. It doesn’t mean he’s never upset, though!

Bringing Anna’s puppy home.

Jordan does this almost-nap thing at random times throughout the day. Poor boy should actually nap.

I got to attend a women’s retreat with my old church sisters! It was really timely for my soul.

I made big steps towards mental and spiritual healing that weekend.

Grandpas are the BEST. And the way he falls asleep….. so funny!

Daniel first learning to stand up with the wedge… the banister rails were a good place to practice!

Dollar Tree fun. I run errands and do fun things on Thursdays when I have a helper for Jordan. (These two are five months apart in age)

One of many medical appointments for Daniel:

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Daniel “Reading”

Daniel steals the show again…

Daniel pretending he doesn’t know the letters… then reading numbers and letters in Carolyn’s handwriting book. This was the first time we’ve opened this book. He didn’t know how to read a line and then start back at the beginning of a new line, so Brian helped with his finger too. The last page they did had letters out of order and Daniel still knew them!:

Before – trying a few letters he didn’t know. Then starting to read the alphabet in order….. and not wanting to continue down the page. haha

Daniel and Brian singing Old Mc-Daniel:

Daniel and Anna singing silly together earlier that day:

Daniel getting onto the couch… I need to do a new video – he has learned how to do a LOT more in just the last couple weeks… getting to standing and onto furniture really well!

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Weeping

My sons were born with special needs… their bodies and brains limited and challenged, the roads of their lives difficult and needy. And beautiful.

And my sons were born to rejection, by their families, their friends, their communities and their medical providers. They were born to cruelty and neglect by their government and their caretakers. They were born to pain and abandonment.

And I weep. I weep for the brokenness in their spirits. I weep for the children who died before redemption on earth. I weep for the children suffering this very moment. Being hurt. Being left. It hurts. And I have been begging God to explain why He has permitted it. Permitted the mistreatment of babies and children. The families broken. And not just in orphanages, but for the abused, the refugee, the war-torn, the abducted.

How I found my son when I brought him from his Hell of a home. In better shape physically than many… but that’s not saying much.

Two answers He has given me, though the grief is not less. First is that there is redemption, though not usually in this life. Second is that He also weeps. I am not done asking God for understanding. But I’m here to share what He laid on my heart this morning:

He Weeps
A lament

The baby sleeps in his mother’s womb
And he breathes out life and the baby stirs
Life grows and it’s beautiful.

His dreams for the child include beauty and truth
Life long, bone deep joy and content
Passion and creating and building and LIFE.

But the life he breathes, he knows the future
He know that we’re broken and the word fallen
Evil lives here and He hasn’t yet cured it.

So that life he breathes, so beautiful and strong
Is touched by pain before it is born
There is brokenness here, still in the womb.

The Lord sees beauty in the most broken of creation
Seeing the potential, the sweetness of spirit
He loves every child, no matter… no matter.

He sees the children after their birth
Watches for mothers and fathers with love
Calls on the Church to support the struggling.

And He begins to weep.
He weeps for the cruelty
He weeps for the pain
He weeps for the children
Left in the rain
He weeps for the loss
Of the dreams so perfect
He weeps for the children.

Lord, please come again
Because it hurts
And I cannot fix it
I am too small
Too broken.
We weep.

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