First Steps

Daniel’s first independent steps came yesterday morning. Brian made him a pvc walker the night before to try out. He stayed up on his feet for around 15 minutes, which is a long time for him and finished by wanting to get in Jordan’s bed tent… pushing his basket of toys in front of him! We’re so proud of him.

I recorded this as facebook live – this was my caption on facebook:
“Daniel WALKING!!!!!
Take THAT, non-bendy legs. Take THAT, boy in a crib for 4 1/2 years. Take THAT, spirit of fear. Take it and choke on it!
It isn’t ideal by therapy standards, but it isn’t bad at all! I’m thrilled with this contraption. I’m so proud of my husband who managed this in the midst of being overworked. I’m enamored with this tiny boy with the brave heart!”

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Words

Treasure of my heart

With a nod to a friend of mine whose impressive list has inspired me… here I have listed significant things that I’ve accomplished or survived during the last 12 months.

  • Did a bake sale and henna table at a festival as an adoption fundraiser
  • Watched a solar eclipse
  • Canned peaches and salsa
  • Bought and sold a full size passenger van… then bought a new minivan
  • Completed a homeschool year for children in Kindergarten, 2nd and 5th grades including a daughter in ballet (twice weekly and a large recital)
  • Passed court and adopted a son! Passed court a second time in the United States and readopted him a few months later! (strange, but true)
  • Flew to Bulgaria, hugged my son’s Bulgarian mom as she cried, struggled through exit requirements for two weeks while keeping a tiny body alive, flew home (over 24 hours traveling) and stayed in the hospital for a third week.
  • Navigated insurance and disability programs to get a car harness for Jordan and a wheelchair for Daniel
  • Navigated a myriad of medical and therapeutic and surgical appointments with my new son, helped him through a double surgery, and developed a treatment plan.
  • Learned how to use two types of feeding tubes, how to puree table foods to fit through them, how to calculate (in depth) his food’s nutritional content, how to avoid constipation in a body with low muscle strength, and supplied my kitchen with all of the neccessary stuff.
  • Helped Jordan through the appointments required for minor surgery (new ear tubes) and changed Daniel’s ng tube in the waiting room to the stares of everybody else there. (a memory that makes me feel badass.) < -- I tried to find a synonym for badass that doesn't refer to the donkey's unfortunate archaic name, but there just wasn't any other word that worked.
  • Hired, lost, hired, lost, hired, lost, hired, lost, hired, lost and rehired a housekeeper for help every other week. (With thanks to my brother for the gift that got me started – it really has helped.)
  • Was reported to CPS by (formerly) trusted people in my life, subsequently had the case dismissed as unfounded, but developed PTSD as a result.
  • Hired a counselor for weekly support for one of my daughters for several months
  • Did all kinds of dentist and well appointments for the kids and myself
  • Broke my toe and lost the ability to exercise for about 6 months
  • Completed two post placement reports for Daniel (two down, two to go!)
  • Went to multiple psychiatric appointments with Jordan and worked through different medication trials to treat severe irritability and anxiety. Finally found a lot of relief following protocol for treating PANDAS (an autoimmune disorder).
  • Made it to 13 years of being married with the best man I’ve ever met.
  • Discovered hot yoga (heated room hatha style yoga) and began walking again!
  • Interviewed respite providers and finally hired a respite provider who helps with Jordan twice a week for eight hours!
  • Completed assessments and testing (multiple appointments!) and lots of paperwork until I finally got both Jordan and Daniel eligibile to recieve services through DDA (Developmental Disability Administration).
  • Did fun summer stuff like entering stuff in the fair, going to the fair, taking the girls to a day camp for a week, introducing Anna to her middle school youth group including an overnight camp, playing in the pool, having the cousin’s over for a big birthday bash, and playing in the river and the nearby lake.
  • Prepared a curriculum for the new school year
  • Did the regular housekeeping, cooking, grocery shopping, yardwork and blah blah blah.
  • Released expectations of: canning, cleaning, yardwork, planning ahead, organizing (except when it helps me function), attending functions, signing up for events and activities. I discovered which friends stuck close and which ones were absent.
  • I HIRED A COUNSELOR.

    It’s been an epic year and I’m proud of myself.

    My personal goals right now off the top of my head:
    Increase personal health (physical strength, emotional and mental stability, peace/joy/satisfaction)
    Be steadfast with providing both love and care to my children (including the special physical and emotional needs of my children)
    Nurture the most important relationship in my life – the one with my husband

    Wish list goals:
    Deepen relationships with friends
    Reconnect with my community in general

    My champion, my husband.

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    August Photos

    Well, it looks like we’ve had some good times! 🙂 We have indeed!

    Standing tall and proud.

    I had to tease this profile picture out of him, because I wanted to make a sillouette for a craft. Hasn’t happened, but now I can!

    Sweet fingers. He can do everything with this hand.

    This picture makes me giggle.

    I’m soaking in all the beauty of his darling feet before the doctor reshapes them to be walked on.

    They are so soft and darling right now!!!

    I love this sink! It has a tiny little pump that cycles the water through. Daniel plays with it for hours.

    Two five year olds!

    Who likes the toy the most?

    Anna made this pound cake and frosting completely unsupervised. I love older children!

    This was a wonderful afternoon. We aren’t doing this as much now since the yellow jackets are getting really bad.

    Maggie got a blue ribbon for her drawing and the description/story that went with it!

    Anna got a blue ribbon for her Tree of Life painting. This was my personal favorite of her entries.

    She got a red ribbon for her firework painting! (above)

    Anna and her friends got a special ribbon for their homemade board game, complete with an accompanying story, playing pieces, rules and money!

    Carolyn got a blue ribbon for her photo of Daniel and Brian (above her head)

    Anna got all blue ribbons (I think?) for her four nature photographs. All four are in this photo and she’s pointing at the two closest to her. (They’re all size 5×7)

    Carolyn got a special award for her photo of Jordan and Brian at the lake!!!

    Blue ribbon for Anna’s cookies!

    Wandering the giant exhibit hall at the county fair.

    We got a free pancake brunch from Fred Meyer at the fair!

    Yummy food!

    This is where Daniel spent most of his time at the fair. It is a loud, busy place and he squished himself really close to us.

    We’re watching our neighbor’s fashion show (sewing 4-H).

    My dad and niece came to spend the day with us at the fair. It was really special.

    Yee-haw!

    The only ride Daniel was big enough for (and barely) was the merry go round. I didn’t realize that going on rides was going to be a loss for him due to his short stature. It was not a problem this year, thankfully.

    Sweet girls!

    On his third time on the merry go round, he was brave enough for Brian to stop holding him!

    In the reptile and wild things pavillion, I took a picture of Daniel and me next to the giant parrots. haha

    Anna’s good friend was with us too! The adult with the camera wasn’t with them, but I foudn this picture of Maggie going on the roller coaster with her! (Anna is not a roller coaster fan)

    Sweet times.

    Thanks to a friend for gifting us this water table!!! It’s great fun and also great therapy.

    This isn’t the best picture of Daniel…. until you realize how much bend is in that left leg!!! I am sure it couldn’t bend that far when we picked him up! He other leg doesn’t bend as much, but even just one leg bending will give him improved mobility! (He can dress up as a peg leg pirate some day and stomp around)

    Good times.

    He sticks out his tongue when he focuses!!!

    The two five-year-olds…. quite the height difference!

    Our good friend came to visit and be a buddy for the kids.

    Daniel is ogling the cords. Only Daniel. (facepalm)

    Dancing!

    Snuggling.

    We get to buy chicks every fall thanks to so many natural predators reducing our flock size. The girls are enjoying them especially.

    No sun-tan to speak of….

    They called me to come and see!!!

    Poor baby chicken… played until it fell over.

    Look what arrived!!!!

    Custom TiLite Twist wheelchair! Daniel is doing awesome with it.

    Siblings. Love!

    Doggie love

    I can’t wait to meet my new niece!!!!!!!

    Daniel was brave enough to ride in Jordan’s wheelchair for a bit. Especially when we were next to the one-man band!!!

    Watching the ponies go by.

    Daniel enjoyed the bean pit a lot!

    A carefully prepared little package made it successfully over the ocean to Daniel’s Bulgarian mom. It included a necklace with a thumbprint charm (Daniel’s thumb print), a lock of Daniel’s hair, some of Daniel’s artwork (scribbles!) and my tracings of his hands and feet.

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    Heart of the Matter, Matters of the Heart

    Hello to myself! And to anybody else still reading this corner of the universe.

    I have used this forum for years to explore matters close to my heart, to put words to my life and try to understand it better. Sometimes I celebrate success here and sometimes I report on suffering or defeat. It’s just a “what I’ve got is what you get” kind of place and it’s been therapeutic for me. I feel a quiet, but significant amount of obligation to share our experiences as an adoptive and special needs family with my community as well. For those unfamiliar, I hope it makes our family feel more “normal” and for those walking the road alongside me, I hope it makes you feel less alone.

    But I haven’t been writing much these last few months, because there’s a lot of turmoil in my heart. How can I write about any thread of consciousness when all the threads are tangled in a hopeless mess? The good is all tangled with the bad and my thoughts are a mother-of-all snarls.

    So I haven’t written much except for sharing photos. Today, hopefully that will change and I’ll begin to share more from my heart. Here goes:

    I have had bitterness and anger issues for a long time… it’s an issue tied up with the people in the Christian church especially, but one that has bled over into all kinds of relational areas. It’s a struggle and a wound that is tied up with names like rejection and and betrayal and unimportance and loneliness… and bitterness and anger are their fruit.

    So I hired a counselor. And we have found the edges of this snarl and are beginning the painful and difficult process of removing the “infection” and healing the wounds. (My choice of words)

    I’m bearing the wounds also of my choices in family life. I am loving and raising two broken-hearted boys and wrapping them in close to my heart. I bear the marks of their lashing-out from fear and hurt and anger themselves (for wounds remarkably much like my own – rejection, betrayal, unimportance, loneliness!). Does that make sense, that I bear wounds from this?

    Example: Daniel sometimes wakes up and his first conscious thoughts drive him to panic and scream and physically thrash and bite and scratch… himself if I’m not there or me as I run to his aid. Something like waking up hungry… or sore… or without a preferred toy… or after a dream… or to a sound that reminds him of an old memory… it sends his body immediately into fight or flight mode – panicking and hurting on the inside. It’s heart-breaking to hold him. It’s painful (inside more than outside) to catch the blows. And his trauma becomes mine and we walk it together.

    This is something I will work with the counselor about… but not yet since I’m busy with that bitterness stuff.

    I’m working through the muddle of my physical weakness… the years of being hypervigilant and knowing always where my children are, what they’re doing, how they’re feeling, their health, their food, their safety – it’s taken a toll on my body. Now, it’s not begrudged and I don’t mind the whole aging thing much yet, but it can be hard. The weight gain… the depression and anxiety… the occasional (1-2x/month) mental breakdowns. I didn’t struggle with just a few years ago. My reserves are simply spent and it takes smaller stressors to send me into a nosedive that is largely of physical cause. I do a pretty good job of keeping my mind in the right place and my actions appropriate… but when I call upon those natural responses of increased adrenaline to get through a fast-paced or panicked situation, I find that I come up dry. Or if a situation is highly emotional or earnest or tragic, my body begins producing those necessary physical chemicals that help regulate thoughts and emotions in those situations… I dunno, noepinephrine, dopamine, seratonin, what have you. But it’s like they’re out, because I overindulged through some difficult years. Sometimes it results in crankiness, anger, tears or shakiness. I sometimes have difficulty prioritizing tasks or thinking clearly. This is not me complaining… more like itemizing and measuring so that I can see improvement with appropriate self care.

    Self care… for me that is time alone in my bedroom. Choosing simple meals to prepare for the family. It is going on walks or to a yoga class. It’s finding a project that excites and pleases me… and which can also be completed in a short amount of time. It’s buying a favorite snack and putting some of it in the car so that I don’t run out of food when I’m running errands and can’t stop. It’s putting water bottles in the car for myself too. It’s preparing hearty vegan lunches for myself that I can freeze… because those meals make me feel my best and if I don’t have a meal that is easy to prepare, I may miss lunch entirely. Self care is taking a shower even though it makes something else late. Self care is leaning on my husband, sometimes too much, so that I can go on that walk or run that errand completely alone. Self care is counseling so that I can heal from old hurts in my life so I can focus on the here and now. Sometimes self care is cookie dough.

    And all this difficulty is thorougly mixed with successes. Daniel’s sweet spirit and the days of his acceptance and joy and “rightness” where fear takes a back seat. Jordan’s first-time-ever respite provider who is enabling me to engage better with the girls and leave the house a little more easily. My incredible husband who is whole-hearted in his devotion to his family and wife. Watching Daniel experience firsts. Planning and experiencing fun activities as a family. Watching the girls grow and have a suntanned, waterlogged summer. Seeing Anna lose molar teeth and have huge growth spurts. It’s a full, beautiful life. And I’m living it with large wounds – some fresh and some old and some mostly healed and others with infection. Some days I live with freedom and some days I drag.

    This is where I’m at. I’m awesome and I’m strong. But I’m doing hard work. And my awesomeness and strength flag. I feel important. I am all in. My dad (and many dads for generations, I think) has commented that if it’s hard work, it’s probably worth doing. Hmm – I can’t remember what he said exactly, but I know it made my work as a mom, wife, sister, neighbor, and friend feel worth every effort.

    I think that’s it for now. I’d like to type a development update for Jordan and Daniel and the girls too. I’m proud of my children. I’m not sure how long it will be before I write again – right now I feel drained of all clear thoughts. But maybe I unplugged my thoughts and more will come flooding now. Time will tell. Please keep praying for us!

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    2018-2019 School Year – Take Two

    Making salsa last fall

    Summary for girls – core curriculum with optional bonus items plus a changing-with-time interest-based subject.

    Anna, 6th grade:
    CORE:
    Sonlight American History, Advanced Readers 1
    Teaching Textbooks Math 7
    Journaling her interest-based studies
    BONUS:
    Handwriting Without Tears, Cursive Success
    Typing with Typing Club or emails, journaling, etc.
    Christian Light Publications Art
    Out of home – Art class, Friday School, swim lessons, Middle School Church group

    Maggie, 3rd grade:
    CORE:
    Sonlight American History, Regular Readers 1
    Teaching Textbooks 4 and/or 5
    Journaling her interest-based studies
    BONUS:
    Handwriting without Tears, Cursive Handwriting
    Christian Light Publications Science 3
    Christian Light Publications Art
    Extra Curricular – Art class, Friday School, swim lessons

    Carolyn, 1st grade:
    CORE:
    Sonlight American History 1 (listening)
    Singapore Math – (Primary 1A/1B)
    Journaling her interest-based studies
    BONUS:
    Handwriting Without Tears, Printing Power Plus
    Christian Light Education Reading, 1 (will start by reading the “Primer” books without any workbooks)
    Christian Light Publications Art or Kumon workbooks
    Kumon: Jigsaw
    Extra Curricular – Art class, Friday School, swim lessons

    Interest led subject ideas:
    Track and field – Healthy Kids Running, Make a track and field setup at home? (a hurdle, a “track”, a shotput, a long jump???)
    Dog training
    Yoga or shorter version or for kids yoga
    Drama or watch performances
    Tae Kwon Do
    Survival skills or practice these skills – maybe something here? Do you know of any good at-home resources or books?
    Cooking – mac and cheese, top ramen, scrambled eggs, cookies, biscuits, berry crisps, pound cakes, quick bread, muffins, yeast bread, pizza, stew, steamed vegetables, meatballs, cheesecake, cake, gravy…
    Computer programming: Sonic Pi, Processing (graphics coding)
    Candy making and crystal growing – Rock Candy, Homemade Pop Rocks, Other candy
    Bug collecting – insect collecting kit and many online how-to articles or videos and ID books and ID websites and websites
    Chick hatching
    Anatomy and dissecting
    Bacteria growing (petri dishes and microscopes)
    Bridge-building
    Chess
    Poetry
    Crocheting or Knitting
    Bird watching
    Sex education (will probably force feed this book at least)
    Friendship bracelets
    Henna
    Horsemanship
    Passover
    Sewing

    Week:
    *Monday-Thursday core curriculum and interest studies
    *Friday reserved for Friday School (8 weeks in fall, 10 weeks in spring) and recover/catching up when Friday School is out. A friend is graciously supervising the girls at Friday School and driving them home at the end of the day. This wouldn’t be possible without her!
    *Art class weekly – not sure which day yet, but hoping for an afternoon class.

    Considering:
    Swim lessons weekly, probably in the evening for 1-4 months
    Ballet, would be twice a week in the afternoons

    Additional curriculum on hand:
    Anna
    All About Spelling 2
    Daily 6 Trait Writing, Level 5
    Christian Light Publications Science 6
    Growing with Grammar 4
    Wordly Wise A/B/C

    Maggie
    All About Spelling 2
    Daily 6 Trait Writing, 2
    Growing With Grammar, 2

    Carolyn
    Christian Light Education Science, 1

    The boys:

    Daniel, Kindergarten:
    Not sure! Skills will be letter recognition, number recognition, counting, colors, shapes… preschool stuff. Learning to hold a pencil. Learning to sit and work. Learning English, how to use a wheelchair, emotional regulation… SO MUCH STUFF. We’ll see how he’s doing as fall approaches. I have plenty of leftover preschool and kingergarten stuff I can offer him if he shows interest during schooltime.
    Things I have that I hope he will try:
    Brain Quest Workbook, Pre-K
    Kumon: Coloring
    Kumon: Tracing
    Kumon: Sticker & Paste
    Kumon: Mazes
    Kumon: Letters
    Read-aloud, picture books

    Jordan, 4th grade:
    Puzzling over how to incorporate Jordan into the school day best. He’s not in a place where he can attend to academic schoolwork, but he is still working on many things. I expect to have a respite provider with him two days per week.

    Archive:
    *2018-2019 School Year Take Two
    *2017-2018 School Curriculum and Review
    *2016-2017 School Curriculum and Review
    *2015-2016 School Curriculum and Review
    *2014-2015 School Curriculum
    *2013-2014 Review

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