"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Thursday, February 28, 2013

Growth

Katya shows growth. Growth physically (the clothes of hers that I just sold are a sharp reminder of that! In less than two years, she has gone from a size 3T to 7's!) Growth emotionally. (She now comes readily to us seeking affection and desiring comfort if she doesn't feel well.) Growth in overcoming horrendous fears. (Katya now will feed the goldfish, and even put her fingers into the water! She also is starting to cautiously touch the tail of the dog that is owned by her respite care providers.) Katya is also growing academically. (Her LD teacher told me today that they believe Katya knows how to read and spell "sit" and "play" now and are adding in additional words.)

Along with Katya, I think the rest of our family has been growing. Growing in patience, growing in love, growing in faith and dependence on God, and so many other things. These are all good things.

Along with all those things, some of the family have been growing in their ability to handle more responsibility. With all the many medical appointments I am needing to take Katya to, my hours at home to accomplish things are being cut as much as 5 to 6 hours a week less than what I was having. Even that didn't feel like "enough time"--now, I have even less.

Thankfully, Kristina has been stepping up to the plate and helping more with things such as food prep. Today when I needed to take both of the youngest kiddos to the Dr., I needed Charity along with me to help since Katya requires a full time person around her when Chad is present in a situation like that. When we arrived back home, Kristina had taken the pound of deer burger I had pulled out earlier in the day to thaw and turned it into a pot of delicious vegetable soup. It was her first time to make soup all on her own, and although I had helped by giving her a list of ingredients prior to leaving, she still had to figure out the amounts, prep and chop all the vegetables etc. She had done a **great** job and we were very thankful and happy to sit down and eat that nice warm soup!

We made sure to save enough for Katya to take in her thermos to school tomorrow since soup is what she wants for lunch every day. Other than that, it was eaten all up! No left-overs for the fridge!

It's good to see our children growing.

Tuesday, February 26, 2013

When Life is Stormy After Adoption

Today I read a blog post about how stormy life can be after bringing a child home. The author talked about how there is little support much of the time post-adoption for hurting or struggling families. Good stuff, there. Read it.

We were fortunate to have a small support system in place after bringing Katya home. Even so, it's not been enough.

Reality is that we face challenges with Katya that even other experienced families who have adopted many, many, many more kids than we do are unable to help us with. Our Social Worker has not been able to give us any "keys" to success for some of the behavioral issues we face on a daily basis. Our family is struggling. We often feel just slightly  purely overwhelmed.

Still, I can't imagine how much harder it would be if we had NOTHING. No support net-work, no friends who are praying for us, no Social Worker who cares and *sometimes* can give us good suggestions that DO work for some things. No monthly support group meetings.  So, in the midst of my frustrations, I'm still grateful that we do have what we have!!

Our family is exhausted, but still standing strong, most days. On the days we don't, we are glad for those who hold us up in prayers. And even on better days, we are still grateful for prayers.

We love our little princess and even on our worst days are still glad she is with us. Reality is, she likely would not even be alive today were she not here in the USA and getting the medical care she needs. Her time was running out and fast in the orphanage due to the lack of so many basic life necessities.



Thank God with us that Katya is here--loved, safe, and cared for.

Hopefully, someday, there will be such a network of support and help for adoptive families that no family ever needs to feel alone, and no family ever has to walk alone.

In the meantime, what ideas and suggestions do you have to come along side families who are facing storms and in need of support?

Saturday, February 23, 2013

Seeing and Doing

Last night Charity and Kristina laid out the blocks Charity purchased a couple of Mother-Daughter trips ago to make herself a quilt. The pattern is called, "Little Apples" and is by MODA.

When they were almost done, they called me to give my opinion on a few thorny areas. As I sat on the top step talking with them,  and helping move the last few blocks around, Katya sat, all clean and fresh from her bath, and snuggled with me.

I soon tucked her into bed since Paul was at a meeting, and then Charity gathered up her blocks after snapping a few photos.



This morning Charity and I got up early and left the house by 7:30 AM to get her to her violin lessson. When we arrived back home a little after 10:00 AM, what did we spy pasted to the door of the fridge with magnets?


The scanned in version chopped off the top, but she had carefully written "Duecks" and then some other letters.

Paul said that when he got up this morning Katya had come down a few minutes before he got up and was standing at the kitchen table quietly drawing and coloring.

Now, I always knew that there was a whole lot more to our little gal that the casual observer would likely miss. I think this is pretty good proof.

If you study the drawing, you can see how she drew in the edges of the room, even showing some parallel perspective. If you study the photo carefully, you can see the base that holds our fish tank on the right hand side of the photo. If you look at Katya's drawing, you can see her attempt at drawing the base of the fish tank in the left hand corner. Look at the right hand of Katya's drawing and notice what appears to be her attempt at drawing the base of Charity's music stand, which you can see in the photograph in the upper left hand corner.

This is the little gal that less than two years ago didn't even know how to hold a pen, pencil or crayon. She had clearly never drawn, scribbled, colored or anything else that a typical and normal child would have done by the age of 6.5 years. She also has TWO permanently dislocated elbows, evidently due to abuse before she came into our life, which limits her abilities. Even so, this is what my kiddo did--from memory, after a night's sleep.

Does she rock, or what?!

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Charity was able to sew the blocks together today in strips, and hopefully soon she will have a lovely twin sized quilt done for her bed.



We are thinking of running a white strip between each row of blocks to make the quilt a little larger, so we don't need to do as wide of a border to get it to twin bed size. Time will tell though how we actually end up doing it. This is Charity's first quilt so this is exciting.

Thursday, February 21, 2013

Happy Days Are Here Again!

Yes, they are!!!

Katya is feeling so much better since we figured out that she has TMJ and have started treating it! Gone are the headaches, she's gaining weight again, and getting some pink back to her face!

She has been able to be in school all day each day since school started back up on Tuesday. She's bringing home some good papers, AND her teacher happily reported that today when she was asked something in class, Katya said, "yeah". The other kids heard her and were so excited! ;-)

Today, I was actually able to get OUT OF THE HOUSE with the home-schooled kids! I just had to say, "Forget it!" to the housework, the school work, and the stacks of paper work . We busted out and ran some "real life teaching" errands. These included a stop at the bank to help Charity deposit some of her earnings from the violin classes she teaches. Her teacher said she needs to upgrade her bow before she begins performing more in public, so that means she has been carefully saving every thing she can towards that goal.

We also went to the library and re-stocked on books. It was so good to get to run errands and go to the library with the kiddos. We are going to be enjoying our new reading material for awhile as we stocked up.

After we got home, we quickly unloaded groceries, and then I took Kristina and went to school to get Katya. We then trundled off to her appointment. By the time we got home, it was supper time, then time for baths and bed.

In other news, we got the appointment dates today for Katya's one year follow-up at Johns Hopkins. She will be seeing both of her regular Doctors--Dr. Amir Dorafshar, and Dr. Ben Carson. She will also see a new Dr.--a vision specialist--Dr. Repka. We are hopeful that he will have some guidance for us with Katya's vision issues. We won't be going till towards the end of April, so it will end up being a little past a year post-op. Hard to believe that next month it will be one whole year since we had to hand our girlie over for that grueling 9.5 hours of surgery (12 hours under GA due to all the prep time required for the surgery--and then another 2 hours or so till we were allowed to see her in the PICU, so about 14 plus hours we went without seeing her that day. . . . it was a LONG, LONG day, that started early in the AM and did not "end" till way late into the night when I traded off with Paul after he got a bit of sleep and then spent the rest of the night with her while I slept.)

How we thank God for keeping her alive and for the progress she is making! Thank you for praying for Katya and our family. We appreciate each and every prayer!

Tuesday, February 19, 2013

Blueberries for Little Sal

Katya has taken a leap up in her interest level in books!

The other day, it was the delightful "Make Way for Ducklings" by Robert McKloskey. When we looked at the suggested age level, it was 3 to 8 years, putting Katya smack-dab in the age range. So, we dug out "Blueberries for Little Sal" and read that to her. Charity had the fabulous idea to read it using actual [frozen] blueberries and a small pail we had on hand. When Sal put 3 berries in the pail, Katya got to put 3 berries in the pail. When Little Sal ate a blueberry, Katya ate a blueberry!

Katya was quite interested in the story, but only wanted it read to her once, that first day. But the next day, she brough the book around several times, wanting Charity to read it to her. She tries hard to imitate the "plink, plinks" of the berries into the pail,  and the "caw, caw" of the crows.

Three cheers for "Blueberries for Little Sal" and all the other great children's books out there that are reaching Katya!

So what other books would you suggest for Katya?!

Sunday, February 17, 2013

A Full Weekend

Katya was feeling enough better that we had a very full weekend.

We ran off to the support group party. Katya wore the jumper Charity sewed for her. Charity's usual violin lesson was cancelled for the day due to her teacher being out of town, so she could come too.


Katya wasn't in a picture taking mood, so we didn't get any real good ones of her that really show the jumper, but there you have it . . .

Katya did enjoy the party overall--she is slowly getting more comfortable there and we are having less and less tantrums, and more participation.

One of the helpers commented to me on how GOOD Katya's eye hand coordination is for fine things. Way better than she would have expected. Yes, it's one of those bad-things turned good--all the years spent "juggling" small items in her hands and rubbing  them on her cheeks when Katya had failure to thrive at the orphanage led to good finger dexterity and strength. She quickly dropped the need to carry small items around to rub on her face after she came home and was getting love and stimulation. In fact, she dropped it so quickly we were truly amazed. But now her fingers are very nimble for playing the piano, playing the harp and various other activities.

One exciting thing from the support group was that we had TWO new families who came--and both of them have adopted children! Up to this time there were not very many families with adopted kids--only one that I know of, and that Mom, being a nurse, usually helps with the kids instead of sitting in with the the Moms in the support group. So that left me the only one with had the unique combo of adoption AND special needs. I was very happy to have "company" in the adoption/special needs category.

Also, a delegation came from a church in PA that is thinking about starting a special needs ministry. They wanted to observe and ask questions. Knowing how many times parents and professionals expressed a wistfulness for a similar program when we were at Johns Hopkins Hospital, I know it's a real need likely all over the country! I hope that what they saw yesterday makes them eager to go home and launch such a sensible and helpful program in their own community.

After the support group, we dropped Kristina off at a friend's house for a birthday party. Then we came home, ate a quick lunch and tidied up the house before heading out to a very special party.

When we were staying at the Children's House in Baltimore during Katya's reconstruction and recovery, we learned to know a family, also from Ohio, who was there as their daughter had a hemispherectomy performed by Dr. Carson's associate, Dr. Jallo. They were in the "rehabilitation" portion of their stay there, and during a time Katya was very medically unstable, they were there for us with support and prayers.

Since both of us were very tied up with our own daughters, we never met each others girls, but kept in touch loosely after our ways parted through our blogs and emails.

Yesterday they threw a "One Year Seizure Free" party and we were thrilled to be able to go! It just felt RIGHT to meet again and to introduce our daughters to each other, and to thank God together that they are both alive and doing relatively well.

I'm VERY happy to report that Katya did amazingly well, given that we walked into an entirely strange home, full of entirely strange to her people! She needed Mommy to hold her and rock her, but she got through it with what is for her a mild level of anxiety, instead of off-the-charts anxiety like she had at her first official birthday party at the beginning of the month. So it was encouraging to see that she evidently was able to take her first experience and apply it to the second one to help keep her anxiety levels down. Way to go, Katya! ;-)



Chad LOVED that we tramped to a snowy football field to release 20 lanterns into the wintry night sky! Yes, it was VERY cold! Our van thermometer said it was 20 degrees when we climbed back in for the drive home, and I know there was wind which made it feel very bitter! Charity took Katya back to the van once the first lantern went up because she was starting to shiver, even dressed as warmly as she was.



Filling up the first lantern. Little K. and her parents are silhouetted by it.






And off it goes!




We felt very privileged to be invited, and it reminded me again how in this journey of medical challenges, we have been so blessed to meet so many other very neat and amazing families! Not only in the adoption world, but also families whose bio kids are struggling medically. We treasure the contacts we maintain with families we learned to know while at JHH.

Membership in the "club" isn't that fun, but I gotta tell  you that the MEMBERS OF THE CLUB just seriously are awesome.

We came home, tired but happy, picked up Kristina from her fun-time, and then got everyone into bed!

Today we had church and a potluck afterwards. Katya's behavior after church was pretty tough, and it was bad enough I'm not blogging details out of respect for her. Let's just say that we were all thankful that after we got home the rest of the day went better . . .

Tomorrow we are off to two different Dr. appointments for her. The anesthesiologist who was to do her general anesthesia post-poned the appointment for this week after learning that she has a mild, occasional little cough. He kept talking about how they can't do GA with a "coughing fit". Um, a single, tiny little cough 3 to 6 times a day is hardly a "coughing fit". But whatever, it may be a good call on his part. It changed our week's plans. We'll try to roll with it and hopefully she is well by the next time a scheduled slot comes around. I wouldn't bank on it if I were you, Mr Anesthesiologist though, given how sick she has been this winter! But hey, your call. Although . . . --well, maybe that is probably best kept for a blog post another day!






Friday, February 15, 2013

And . . . The Day Was MUCH BETTER!

Thanking God that Katya's day today was much better! She actually had a break from her headaches today and didn't once need a cold pack or Tylenol! She was much more back to her perky self. We are so grateful for the break for her AND us.

A couple of things of note:

#1. Katya enjoyed us reading "Make Way for Ducklings" to her recently This is great, because the suggested age range is 3 to 8 years of age, meaning she enjoyed a book in English that was her age level! She even tried to help quack when appropriate in the story for the ducks!

#2. Katya lined up all her foam bath alphabet letters in the bathtub correctly tonight except for reversing T and S !!! Some of the letters were upside down, or back to front as it were, but they were ALL in order from A to Z except T and S.

We think that is just pretty smashingly cool . . .

#3. We had a flurry of phone calls and emails going on yesterday with Katya's Doctors. We are getting a clearer picture of what can be done for her in the short term, and setting appointments and plans in place for some in-the-future exams and care. Monday we have two different appointments for her--in two different towns, some distance apart. So my day will be full with that. That is the start to my week--there will, pending the results of the one appointment, be more later in the week. Pray for Katya and for us as we navigate the challenges ahead of us.

We have been blessed with snow this week!


Kristina built this snowman on our back porch after one snowfall! We enjoyed it until it warmed so much that it toppled over in a sad heap, and then was covered with a fresh snowfall today.

Thursday, February 14, 2013

TMJ, Valentine's Day and Real Love

Taking Katya to another Doctor yesterday after an increase in her headaches AND her starting to hold her cheek at the joint area, seems to have given us another possible clue to some of her issues.

She has the "tell tale clicking" that frequently accompanies Temporomandibular joint disorder, known frequently as TMJ for short. We are told that it could easily be a part of her her increased headaches. Everyone knew that Katya had the appearance of a misaligned jaw ever since we first met her, and it has been a minor topic of discussion with her dentist. Everyone was agreed that there was no reason to get alarmed till a full mouth X-ray could be taken while she was under GA.

Since that is scheduled for very soon,  pending Katya's health, hopefully we will get assurance that her joint pain is "only" TMJ and we can get to treating that, hopefully geting her back on track to feeling better.

In the meantime, big sister Charity made Kayta a cold pack cover out of soft, pretty flannel!

 
 
Charity also sewed Katya a lovely pink corduroy jumper for Valentine's Day. Sadly, after all the health issues Katya has had this week, she wasn't able to wear it to school today. Being awake from 10:00 pm until 2:00 AM or so and needing Mommy to rock you isn't real conducive to getting back up at 7:45 AM for school. So that was bad news. The good news is that the jumper is not a overtly Valentine's Day item of clothing and can be worn quite nicely any cold, wintery day!
 
The jumper started with pink baby wale corduroy that came in a grab bag of fabrics from the thrift store. Charity used this pattern from Simplicity that we had on hand. When she discovered that it would require lots of bias tape, and we didn't have any thing on hand that would look right with the fabric, she decided to make her own bias tape using a fat quarter of fabric that would look just lovely with the pink solid fabric of the jumper. This was an entirely new thing to her, and a bit intimidating for her, but Charity bravely plowed forward with the project after looking up some online tutorials and watching a video of the process. The end result was very satisfactory.
 

Katya was very excited to follow the process, especially with the rose fabric! We have never seen her get so excited over a fabric piece before! When we first showed it to her and asked if we should use it to make her jumper, she clasped it to her chest with joyful excitement, and jumped up and down just like any excited little girl who was thrilled to get something new!! She then spread it out carefully and then laid table knives on it to weight it like she has observed us doing, and snatched up the scissors, ready to begin cutting! Whoops! We had to explain to her that we would have to cut it this time. Maybe some day . . .

Excuse the wrinkles on the jumper, but here is a peek until you can see a photo of it [hopefully ironed properly] on Katya!




And the back!


The cost of this thrifty jumper in actual expense was very low. Charity created it entirely with items on hand, and all of those items had been low cost to begin with. BUT, the jumper making, and the cold pack cover,  was driven by LOTS AND LOTS of love. Real love for Katya.

Katya is still learning what love is all about . . . but based on how cuddly and loving she can act back towards us at times now, I think she is liking it. ;-)

So even though we aren't managing any thing fancy for Valentine's Day today, I think Katya is feeling the love. As she should. Because it's not lacking around here for our little gal!

Monday, February 11, 2013

Those Pesky Ears

Our little dear had a tough night last night. From soon after 3:00 AM until morning I was on the couch with her after other measures failed.


She was sooo miserable. She didn't go back to sleep until around 6:00 AM. I dozed on the couch with her after that till around 8:00 AM when she woke me back up by pushing and tapping on me.

Needless to say, I felt like toast, and I don't think she felt rested either!

After we took her to the Dr. today, we got the verdict of an infected ear--AGAIN. Those pesky ears just won't let Katya have any peace this winter, it seems. She's out of school till she is fever-free and feeling better.

At least she felt good enough to play nurse to Chad when he slipped, fell, and hurt his back right before lunch time!

She pulled the stool up and sat beside him to look at the books! Even six months ago we would not have been at all likely to see this happen, so we are so happy for the progress we note.



Naps are not Katya's style, no matter how tired she is. But after lunch, she didn't object to cuddling up in the recliner to watch her beloved "Cedarmont Kids" songs while resting.



This tired old Mama took a nap herself during this time! And then went I got up, Katya wanted me to hold her and rock her again. I spent the rest of the late afternoon and evening doing that, so Dad was persuaded to bring home Chinese for supper. That helped a LOT.

Here's hoping for a better night for all of the females in this house (when Katya is awake and not sleeping, it wakes up her two big sisters who share a room with her) because we are all droopy.

Saturday, February 9, 2013

Let Down

It was a very let-down feeling that I had after coming home today from violin class with Charity to find Katya looking wan and curled up in a miserable ball on her Daddy's lap. I took over, and it soon became apparent that she had a headache and fever. We did the cold peas almost all afternoon and evening, clear up till bedtime.


She didn't want to eat more than a few bites of anything--we finally got a couple bits of fresh strawberries and some coconut yogurt into her right before she went to bed, and she didn't even want her normally very, very dearly loved bath either.



Once again, we are asking for your prayers for Katya. She's in bed right now, sleeping lightly. I'd have been willing to keep her in my lap downstairs, but she indicated that she wanted to go up to her bed like usual. Thankfully, her two big sisters share the room with her and will keep ears open for her during the night. I'm praying she wakes up feeling better in the AM.

Friday, February 8, 2013

Exciting TImes

Katya has been started already on the new IEP goals at school. How exciting to see her papers coming home with the numbers 10 to 20 written on them! She seems pleased and will point at the various numbers. The school reports that she is doing really well so far with both learning the signs AND with tracing the numbers.

In addition, she is learning simple addition, and they THINK she is starting to catch on a bit to it. We are so excited!

The best news though . . .  Remember when Katya had nearly a  month of horrid, horrid headaches? Tests did not give any answers as to what was going on, and they seemed to finally ease up and go away except for the occasional headache that seems related to bone pain when the weather changes. Well, shortly before all the headaches had started, Katya had been being sooo incredibly happy and pleasant to be around. She was just so smiley and happy! The change in her was great and we were thankful for it. Then, when the headaches started, all that went away and she again became irritable, cranky, and difficult to live with. Even after the headaches eased up, she continued to be irritable, and not nearly so pleasant or happy. Sometimes the happy-girl we had known briefly would shine through, but never at the level pre-headache. After the headaches, we continued to have health problems with her of one sort or another, and her behaviors and emotions continued to be difficult to live with much of the time.

I'm so thankful and happy to tell you that the last few days we feel like we are getting glimpses of our pre-headache Katya back again! I think we are all praying that whatever is happening keeps on happening and can last long-term!

In retrospect, we believe that long before the facial swelling that sent us racing to Children's Hospital ER showed up, Katya had something nasty brewing for weeks and weeks and weeks. No one remembers for sure when it started, but we know that most of the school year we were needing to wipe the corners of her eyes each morning. There would be just a bit of gunk each a.m. Never so much as to get really alarmed about, especially considering all the issues Katya has with allergies etc.

It has **all** completely and totally cleared up since Katya has finally been given a clean bill of health and clearly is feeling well again! I feel really bad that in retrospect she may have been suffering with some type of a low level infection for months before it finally became more obvious. At least whatever it was is gone, Katya is feeling better, and now hopefully she can make lots of progress again in life due to improved health! Hopefully, no more ear infections, hematomas, strange swellings etc. We love having our girlie happy and healthy!

And at least now when she does have headaches evidently tied to when the weather changes, we have figured out that a bag of cold peas usually does the trick to relieve the pain in about 15 minutes! She always thinks it's a bit funny to be given peas to hold on her head, but takes them gratefully as she knows it works! Dr. Carson had encouraged us not to over-depend on Tylenol for the pain she has, so we are thankful to have found a non-drug aid.

Peas and a favorite video to pass the time till the pain relieves.

When she is feeling well, Katya loves this snowy winter weather!

So does her brother, Chad!!!



And when she is tired of the outdoor fun, there is always the cuddling with Mom that is very, very important to Katya. I can spend an hour or more each day holding her on a "normal" day. Bad days, we do more.

Here Charity captured me mult-tasking when someone called.


Thank you for all your prayers for Katya. And all the support you show in various ways, including shopping through our Amazon affiliate link on the right hand side bar. It means a lot to our family, and we appreciate you, our readers very much!

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For those looking for the full speech of Dr. Carson's, please check out the link here to the entire speech. Can I just say again how much our entire family loves Dr. Carson, and how great a debt of gratitude we owe to God and him?! I hope and pray that the concerns he shared will be taken seriously by all of America.

Thursday, February 7, 2013

Ben Carson, MD, Speaks At National Prayer Breakfast

Katya's Doctor, Ben Carson, MD, was the speaker at the National Prayer Breakfast this morning. I have always been happy to know him, but today, I was super proud to be able to say that I know him personally! God has gifted Dr. Carson with the ability to speak his opinions firmly but kindly and he used that God-given talent today quite well, I think.

You can learn more about the speech here.

I have some exciting things to share about Katya when I have more time! Stay tuned, and keep praying, please!

Tuesday, February 5, 2013

Talking With My Best Friend

One of the blog readers left a comment during the GiveAway of 2013.

Jabreman: I would love to gain (even!) more inspiration from you about how you use your prayer life (specifically your time in prayer) to hold yourself together. I am always wanting to learn from others about how they structure or don't structure their prayer lives.

I have been pondering that one. How to explain? And along with that comment, my mind still swirls with what a very sweet lady asked me soon after we got home with Katya. She was visiting our church and curious about Katya and our story with her. After I shared a little with her, she asked me with great sincerety, "What is the secret that God does so many miracles for you? We have talked for only a short time, yet you have shared many amazing things with me. Do you spend a certain amount of time fasting and praying each week, or what do you do that God moves for you like that?"

Gulp.

No, I don't fast every week. Or even every month. Severe issues with hypoglycemia taught me long ago that it was a bad idea for me. A partial fast, yes, perhaps, but not an entire fast. Do I spend hours on my knees in prayer every week? Nope. The fact that I have trouble passing out when I get up from kneeling down (along with a very painful and bad knee) means I don't kneel to pray generally.

I long ago realized that what was portrayed to me as the correct way to stay in touch with God wasn't working for me. I couldn't remain focused to pray for 30 solid minutes generally, let alone an hour. Maybe that is to my shame, I don't know. But it wasn't working for me. If I had peace and quiet to sit and write out my prayers, I could do that. Or if I could go walk and pray. Otherwise, it was a wash-out.

As more children were added to my family and my demands as a Mother became greater, I struggled. What was God's plan for me in all of this? What was God's will for ME? How could I sort out what I had been taught as a child was "God's will" and "The One Right Way" versus what worked for me in a practical way, and freed me to worship God joyfully, rather than never measuring up to The One Right Way so that I always drug around with a load of shame and guilt?

Gradually, I began to realize that honestly, the best place for me to worship God and pray was when I was out running errands as I drove alone down the road. And I began to realize that what worked best for me was to simply keep my heart focused on God all day long, not "set aside" a mandated hour or 30 minutes or whatever. Old messages from the past would hit me--"You need to treat God like you do your best friend." "Talking with God and spending time in His Word should be more important to you than eating. If you didn't read God's Word and Pray you have no business getting physical food." On and on the messages from my childhood and youth and young adult hood would bombard me.

With time, I began to realize that when I kept my focus on God from the time I opened my eyes till I closed them in sleep at night, took what time I could each day in short bursts to speak with Him AND to listen to Him speak to me, and learned to listen as constantly as I could to His voice, that was when I grew spiritually, and when I felt nutured and protected. God's peace could fill me. No longer did I need to writhe in shame and guilt for not measuring up to what I had been taught was the standard for Christians. Listening to Christian music when I am moving around the house is very important to me as well, and generally happens at least once each day for a good while, soaking my heart and mind with the messages of God.

I began to realize that my relationship with God was very like my relationship with my husband, Paul. Paul's work means that he is often away from home for long periods of time. There can be 24 to 48 hour periods where if we are fortunate, we speak to each other only 2 or 3 times in short bursts of 2 or 3 minutes max. We learn to speak quickly, and address what is most important in that time. It doesn't mean that we don't love each other, nor that we aren't tuned in to each other mentally and emotionally. But practically, there isn't time for more than short, focused bursts of speech. We hit what is most important, and keep on going. When we have time, we connect for longer at a more leaisurely pace.

Realizing that our earthly relationship was not so very different from my spiritual relationship in some ways brought me additional discernment on how my "strange" relationship with God could work.

While some may challenge how my relationship with God works, I find it working for me at this season in my life. I love God passionately, and I'm grateful that He knows that, even if I don't spend hours reading His Word and praying each day. I am happy for those who can and do. And I hope some day to find my way back to "more". But for now, I'm thankful that God hears me in my short little prayers as I run around each day. I'm grateful that He speaks to me all day long in various ways as my best friend.

As to why God has done so many miracles in our family's life? I honestly can't say. I'm just grateful that He has, and that He does. But it's not due to any special formula, that is for certain and sure! And while we have plenty of miracles and good things, our family has known it's share of very tough and bitter times in life as well, so we are "normal" and "human".

Speaking of miracles . . . I never get tired of looking at this sweet one!

 
Nor my other 4 miracles . . . gifts from God, every one of them.

Monday, February 4, 2013

Babbling

Katya was home (again) today for a snow day. She was home Friday for the same reason, and the school called again tonight to cancel school for tomorrow as well.

I have to tell you, the best thing out of all that is that she is getting so much one-one-one attention that I think her babbling is coming right along nicely. She continues to make the "DaDa" sound when she wants her Daddy. And she has that nice "O", along with some other sounds. It's very pleasant. And very encouraging.

Can you imagine spending the first 8 years of your life not able to speak, and then learning how to do it? She has such a long way to go, but she has come such a VERY long way already! I can only hope that Katya continues and finally fully succeeds!

Why exactly she is learning to speak now when she didn't before, we don't totally know. We have some guesses. But we don't know for sure. Maybe some day Katya can tell us. For now, we will continue to enjoy her lovely babbling sounds.

Sunday, February 3, 2013

Praise God for a Good IEP Meeting!

This past Thursday, we had a big--as in, "must meet in the library because there is no room for everyone in the conference room" big--IEP meeting. It was also a long IEP meeting--nearly 3 hours--the crowd got thinner and thinner as it drug on, and one after another excused themselves to leave for other appointments.

However, I felt like we FINALLY made some appropriate progress for Katya in terms of services and goals. In addition to Katya's Social Worker coming at our request, we also took a friend from our local needs support group who is starting her own business as an advocate for special needs kids and their families with IEP matters. Having her involved was VERY helpful, and it seemed from the time the school realized we had invited M, the usual struggles just started easing away . . .  I'm very grateful for that!

In positive news: Katya's speech has been increased from a measly 20 minutes a week to 40 minutes a week. Her OT has increased by a "whopping" 10 minutes a month. Yes, I know, I know. But seriously, I never ever had the issues with her OT time to begin with that I did with the speech, so having ANY additional is nice, but nothing spectacular. In the good news column, I do really like the two OT's she has worked with this year. They seem really awesome. And in the "this is why I always flap my jaw about Katya's needs" column--the current OT did NOT know that both of her elbows are dislocated (!) permanently limiting her range of motion and was setting goals to try to address some issues that are almost certainly from her elbow dislocation and can't be improved really, just compensated for! Why her dislocation issues are not in RED at the top of her file I do not know. Good thing I decided to just reiterate every thing again in the meeting whenever I thought it appropriate.

Also, you will be VERY happy to know that they are going to try to find an aide for Katya for the times of day when she seems to need a one-on-one aide. Since they are going to try to find one within their existing employees I have some mixed feelings about the matter. However, you do realize this is what should have been available to her from the start, and it is finally happening . . . so we will try to be thankful, right?!

They also told us that she is doing great in art, music and gym class and they don't feel she needs any one-on-one there. They said in the mornings when they are focusing on letters in the classroom and other activities, she usually does well. In the afternoons, when they work on numbers, Katya gets easily frustrated and her behaviors escalate. After discussion, it was agreed that Katya probably understands letters and their importance more than she does numbers currently, and thus, her motivation for the letters is probably greater than the numbers. She also is probably more tired in the afternoons, leading to more behavioral issues.

So the plan is to try to provide a one-on-one aid or pull her for individualized instruction during those times.  I am hopeful that it will beneficial to Katya.

New goals for her include some exciting ones! One that I am excited about is that they are going to try to teach Katya her numbers 10 to 20 now, as she has fairly well mastered 1 to 9! They are also going to see if they can teach her to recognize 10 short noun words. ;-)

Overall, the tone of the meeting was much more respectful, we were definitely listened to more, and I felt like things were taken more seriously overall. There is still a level of frustration about the school wanting to assess Katya using ASL and yet not providing her with a certified ASL instructor. Their idea is "we can learn with her".
However, it was clear that if we stood on that hill and tried to battle that erroneous view point, we would be there all day so we dropped the issue for now, after making sure it was raised clearly.

I am glad that the intervention specialist who is going to be more involved with Katya has a hearing impaired husband who now has cochlear implants, and so she had a fair bit of ASL instruction some years ago and feels she can quickly pick back up what she knew. She will be working with Katya a good bit it sounded like going forward, so hopefully this works well for now. I am convinced we need a different system for next year, but I am ACCEPTING finishing out the school year for now with this current system. I am not liking it, but I'm accepting it since I feel it is in Katya's best interests to finish out the year in the same classroom so she gets a sense of how a school year/summer vacation works. That was interrupted last year when she was pulled for her surgery and not able to go back due to her weakened emotional and physical state post-op.

 Good news statements were: "She's definitely understanding and following along better than she did at first. She continues to make progress. Her aggression has reduced from what it was last year." And the one that tickled my funny bone the most was the comment from the school official who administered her tests 4 months ago and direly predicted that Katya had "maxed out at her academic performance" (and left me almost spitting with disgust . . . ). "It may be that those tests were not entirely accurate since it appears that she continues to make progress." Um, yeah? You think so?!

While I totally "get" that Katya's situation is very unusual and new for the local school district, I'm glad that they are seeing that their standard tests just might NOT be that accurate when it comes to Katya . . . it's way too early to make solid assumptions about where she is going to go in life or not go in life.

What I can tell you is that the last few weeks we have been seeing some exciting things happening with Katya's speech! Including her saying "DaDa" now when she wants her Daddy! ;-) How funny it is to hear "DaDa" coming out of an 8 year old's mouth, but also how extremely wonderful. We are so excited!





Saturday, February 2, 2013

More on the Citrus Peel and Vinegar Cleaners

A friend of mine shared this link with me today on Facebook. http://www.theyummylife.com/Natural_Citrus_Vinegar_Cleaners

I was pleased to see that a lot of my ideas that have been swirling around seem like they are "sound" based on this woman's experience.

We started using our first qt of cleaner yesterday/today and are pleased so far. I think it left the socks and underwear smelling very clean. Sadly, the good spicey smell did not linger behind like it did when I was using the Thieves cleaner from Young Living that we were gifted with a few times in the past.. But hey, this is much, much cheaper, and I can do it myself! Which is worth a lot. On both accounts.

I'm hopeful that if I do another batch with more spices in it, and let it steep longer, the spices will become more potent and then linger behind longer.

We have also used it for mopping the floors and are happy with it as well.

Let me know if you try your hand at making a batch or two of cleaner!