The Art of Becoming a Missing Person, AKA where have I been...

Wow...over 2 years.

How can that happen?

I started with the death of my laptop...then a life in crisis...then walking away from almost everything I did publicly online.

Two years ago I was seriously struggling - spiritually, physically, emotionally, mentally.

Today I am seriously struggling - spiritually, physically, emotionally and mentally.

But I am not in the same place I was 2 years ago.  In some ways I'm in a better place, but in some ways not.  Just different I guess.

Why am I back?  I'm not really sure.  I know that writing for me is therapeutic in some ways.  But  for one thing, I finally have a laptop again.  Sitting at a computer for any length of time is just not an option for me anymore (I'll explain that in a minute).  I sometimes feel guilty for leaving my readers hanging after posts about depression, health problems, adoption and other struggles....but most of the time I've just not thought about it much.

Actually I'm not sure I'm back.  That depends on if anyone reads this!  If anyone comments... If anyone really cares.

There's too much that has happened in the last two years to actually talk about it, but I can share a few highlights.

2017:
January  - just couldn't go on having a home business
March  - sold Snap-EZ to my seamstress, Stephanie, also started taking anti-depressents
August - Began weaning off anti-depressants, too many side effects (gained back all 70 pounds that took me 4 years to lose, wahhh)
September|October - 6 week sinus infection. 4th antibiotic (one for the plague, literally!) finally worked
November - Reuben starts a courtship
December - took my last anti-depressant




2018:
January - Our family at home began attending the church we used to attend (1996 - 2004)
              - also diagnosed with allergic asthma - my lung function was at 70%! Yikes!
             - Esther diagnosed with Retina Edema, 13 trips to Children's Hospital in 6 months
February - My knee permanent injury acts up again, causing me to learn how to live with using a cane
April - Enrolled Esther and Christy at our local public school special ed program, 1/2 days
         - Reuben gets engaged, starts a new job,                                                    working swing shift
         - steroid injection in knee - only helps for less than 2 weeks
June - Diagnosed with Fibromyalgia
        - Rebekah and Rachel move out to try living away from home (they are 20 & 23) at the time
July - We put the house on the market, hoping to move to a one level home with less yard/square footage to maintain
August - Synvis injection in my knee - still working great! My cane is retired indefinitely
        - Reuben's fiance calls off the engagement/courtship
August - Christy & Esther enrolled full time in special ed, other school-aged children enrolled at the parent partnership program (homeshooling, but children take classes 2 - 3 days a week)
September - Rebekah moves back
October - Reuben gives notice, goes back to old job after being given an offer he can't refuse




Of course there are so many things that this list leaves out, but as you can see from this small fly over, my life today is very different from what it was a few years ago.  Chronic pain, grief, depression and stress change a person.  More days than not, I am barely able to function enough to get the children ready for school and help with homework.  Anything beyond that is practically a miracle now.

If you are like me, and most people, you know practically nothing about fibromyalgia.  I have learned so much since my diagnosis.  I can look back and see that my journey through fibro started 3 years ago.  For most people, fibro is triggered by something that happens that is traumatic - a car accident, the death of a loved one, the onset of chronic pain etc.  For me it was a combination of several life events - the suicide of a friend, the diagnosis of a fatal birth defect in and subsequent death of my daughter's first son, injuring my back,  and the onset of severe health problems.  Overtime, my health (emotional, physical and spiritual) began to decline.

My Daily Life Saving Stuff

So where am I today?  I have been able to lessen some of my fibro symptoms through supplements, CBD oil,  becoming close friends with my heating pad, the use of many pillows (and now my favorite - the U shaped body pillow), and a product called "Beauty Sleep" that allows me to actually sleep most nights now.  I still have bad days where pain and brain fog rob me of the ability to function above a very basic, survival mode.  But I also have good days - where I actually am able to fold some laundry/wash some dishes/go shopping....I'm still learning.  I'm still struggling.  I'm still coming to grips with this diagnosis and it's long term repercussions for me and my family.

My latest and greatest Granddaughter!

I'm also planning to write a book - maybe more than one - but I'm going to start by writing about a family vacation that we took back in 1999 - the last road trip we ever took as a family.  I've decided on a title:

Looking Up Washington's Nose:  A Monumental Vacation

This vacation included the stomach flu hitting everyone in the first 6 hours, an engine fire, getting jack-knifed, a tornado, a flash flood, dropping the trailer, and more.  It's an epic tale of survival and making memories.

one of my therapy kittens, Prim

So, does anyone want to know more?  If I continue this blog, I'm sure I will share about life with fibromyalgia.  I will also share life with special needs, wonderful grand-kids, children achieving important stages in life, and how I'm coping - the hard times and the times I rise above. And, of course, I might include some snippets from the book as I progress!

Please comment below if you want to see me blogging again!

I can't believe it's been two months, part 2 - Christmas 2014

This post will share things about our Christmas!

With Jessica's wedding just 10 days after Christmas, there were many times we both thought "What in the WORLD were we thinking????"  There was never any down time for Jessica or I.  I was making decorations, ordering Christmas gifts, ordering suits for the boys and clothing accessories for the girls, shoes for everyone and planning two big Christmas meals (not everyone could be home for the same meal, and I figured more left overs the week of the wedding would be a good idea!) and doing the hand sewing on the 6 bridesmaid's dresses and 2 flower girl dresses when Jessica needed it done!

All the kid's exchange gifts ready and waiting for the fun, on top of the
free piano that Jessica got in preparation for her moving away!

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In the few spare moments I could snatch, we put up Christmas decorations and began to do a few Christmas Traditions.  Unlike earlier years, we were unable to have all our children home at the same time for a dinner, so we had a ham dinner on Christmas Eve just after everyone of the children were at the house for just about an hour to do the children's gift exchange.

For years the children have exchanged names between each other and the love to do this.  For a long time we've divided the gift exchange into "littles" and "bigs."   The "littles" are those who are challenged to acquire their own money, so the cost limit is $5, and they have to do what they are capable of around the house to earn the money to purchase the gift they are to give.  This is generally those under the age of 12.  The "bigs" are all the children who have a way to earn money, whether it's working for my business or they have a "real" job, as they like to say, or they are capable of earing a larger amount by doing big jobs for mom (like washing our van).


For me the best part of this gift exchange is not watching the children open their gifts, but watching all the secrets, planning, wrapping and excitement in the givers.  Especially when that wonderful moment comes when this gift they have worked so hard to come by is finally going to be opened!  The joy and excitement on the face of the giver is so worth it all!


I think as the years go by, the grandchildren will be added to the exchange, but time will tell.  Our precious first grand-daughter, Katelyn, wasn't old enough this year to do anything but enjoy being held and fawned over!

One of our biggest, funnest, most sugar filled fun on the Christmas season is the Christmas Sugar Cookies!  This year we tried something new - disposable icing bags.    we just clipped a small hole in the end and didn't even need icing tips!  This was a huge success!  this made for less mess and more fantastic cookies!

Another great idea that Rebekah came up with was putting the sprinkles in a cupcake baking pan!  So much easier and no sprinkle containers spilling!  My contribution to the best ever decorating session was purchasing a disposable table cloth from the dollar store - just roll it up when we were done and throw it away!!!!

One big difference this year is that the cookie decorating didn't start until Christmas Eve afternoon!  So it was left out for all the big kids who came home for the holidays to add their handiwork to some cookies too.  We even had to condense it to half the table to we could play some of our traditional Christmas games!  This year it was Ticket To Ride.  Our other new favorite game is Settler of Catan.  We play with the Cities and Knights and the Seafarers expansion packs, so we like to refer to our games as the Seafaring Knights of Catan!

The children put up pretty much all the decorations during December, except for the lights.  I always do that.  Finally, on Christmas week, I got out my favorite decor and also was able to get a few new things, like the Willow Tree Nativity set which I got a steal of a deal on through coupons and a sale!  Our old nativity set was pretty much just broken up ceramic figures...Mary had lost her arm, the donkey was headless...so on and so forth. I don't think even one figurine was not injured in some way so it was time to put them out of our misery and start over from scratch!  Surprisingly, my porcelain caroler have survives many, many years without breaking anything!

Another Christmas tradition is doing jigsaw puzzles.  Every year we put together a new one.  For our crazy, busy, unorganized family, puzzles are usually disposable, sad to say.  We can usually put together a new puzzle and still have all the pieces, but very few ever get made a second time.  This year we bought a set of 12 puzzles varying from 250 pieces to 100 peices.  We spent many hours doing puzzles together!  My dad used to love doing puzzles and I would help out, he would love this tradition!

After a wonderful evening of fun, family, food, games and gifts, it was time to get everyone tucked into bed.

Another of our family traditions is doing goody bags on Christmas morning.  We began avoiding anything relating to Santa Claus nearly 20 years ago.  Our decorations do not include Santa, nor do we include Santa in our Christmas.  We do, however, give gifts, and have a Christmas tree.  I know some will think this is bad, but we actually threw all our Christmas traditions out the window 19 years ago and only did the things that encouraged us to worship Christ and be thankful for His birth.

We also did things that encouraged our family to be knit together, making memories.  We started out with lights, small presents (the wise men gave the baby Jesus gifts), music, making paper snowflakes, games and acting out the Bibles story with the children in costumes.

 Through the years we have added back some old traditions, and made new ones.  It's just who we are.  So on Christmas morning for years, the children gathered in our bedroom at the appointed time (not before 7 am unless we come and get them), and we give them each a hand sewn goody bag filled with unique candies (PEZ are regulars) and small toys and gifts.  Somes are unique for each child, but mostly now I buy things by the dozen to fill all the bags!


This year was the second year that we included spouses/fiances.  We have decided that the spouse/fiance shares the bag, but there are a few things extra so they don't have to share everything!  Jessica wanted her fiance, Jon, to be able to experience our Christmas traditions, so they spend all of Christmas Eve and Christmas morning with us (he even stayed the night, sleeping on in the living room on our two futons with our son, Jonathan).  So everyone looks a little disheveled and most are still in their pajamas even!  This is the second year we have done the goody bag giving in the living room - our family has out grown our bedroom now!

This year we had something new!  Jason had brought a gift for every one of the kids!  He brought nerf guns!  So the goody bag exchange went into opening his gifts and soon it was mayhem and absolute fun!  Laughter, running, yelling, hiding....all out nerf warfare!

Soon it was time to make breakfast - scrambled eggs (2 dozen), sausage (15 patties) and orange juliuses were on the menu this year!

And after breakfast, it was time to read from Luke 2 and that, my friends, was the most important part of our day.  We love because He loved us first, We have because He gave.  He came to die so we might LIVE.  He gave up heaven and came to earth to die in our place so we can live in heaven someday, if we accept His gift of salvation.  Need to know more, please read my blog post about the free gift of salvation!

Oh - and did I mention candy?  Carese loved snitching candies all day!

Such fun memories!  I wouldn't change a thing!

What are your favorite Christmas traditions?

I can't believe it's been nearly 2 months....Part 1

So much has happened since the girls got home from the hospital that I can't possibly do it justice in one post, and I won't go into details (it's all a blur now anyway!).  Here are photos and some descriptions of the insanity that was our merry life from Thanksgiving to just before Christmas!

First of all there was Thanksgiving but I have no photos.  But we were very thankful indeed as two of my dear friends and their mother came around noon to deliver a complete Thanksgiving dinner for all of us!  I was still swamped with medication schedules and getting up all night to do breathing treatments.  I had threatened that Thanksgiving might just be chicken nuggets and tatortots!  But we had a wonderful, homemade turkey dinner with all our favorite dishes!

Soon it was the Christmas season, but we were in the thick of wedding preparations.  It was the second week of December before there was any "it's beginning to look a lot like Christmas" going on in our home, But little by little we got our act together.  We were socked with a bad cold (that ended up croup with the 4 youngest girls) but no one had to be hospitalized, so we just limped along as best we could.  Dress by dress, decoration by decoration, we began to be more and more prepared for both Christmas and Jessica's wedding.

O yeah - Jessica began a courtship last June, got engaged at the end of August and got married on January.....but I'm saving the details of the courtship/engagement for a very special co-authored post coming here soon!  I will post photos of the wedding here in part 3 of this series though, so hang tight!

Here is Jon and Jessica.  They had Little Earthing Photography do their
engagement photos and Renee did a fantastic job!

We truly enjoyed watching Christy change after her surgery.  She had more energy, she was more relaxed and she was biting less!  She had some sleep issues still, but was better at night overall.  She loves to laugh and loves to play with her siblings.  She can get Esther giggling like no one else can.  Esther loves her and whenever she sees Christy she goes to her and says "Hi, NG" - that is her name for Christy!  They are such a blessing to each other!

Carese has taken to picking up my camera and taking random photos, mostly of her feet or ours as she lowers the camera as she presses the shutter!  The above photo of Esther and I was taken by Carese!

The children got to open one set of gifts early - new pillows and sheets/pillow cases!    The pillows came in HUGE boxes, so wraping would have been silly and storing them until Christmas was not practical.  So we had them close their eyes and we dropped the boxes on their laps - two kids per box!

This spawned some serious bed making and bedroom cleaning.  Here are some photos of some very happy kids all snuggled down for a long winters nap!

Here are also some photos of the super neatly made beds - the boys actually made their own beds and made me come take photos!!  I should have done this years ago.  But alas, the newness has worn off.....


One interesting thing has happened with Christy.  I have struggled to get her three meals by mouth along with three cans of formula into her during her waking hours.  If I succeeded with the formula she was hardly hungry at mealtime.  So I decided to try having her sleep on a wedge and get tube feedings during nap and night time.  This has worked out so very well!

By doing this (and it took several attempts to create a sling that would hold her in place on the wedge) it has also helped her sleep better.  I now believe that a lot of her wakefulness at night has been due to reflux!   I this photos you can see that the head of her crib is elevated.  There is a contraption called a "sling" that goes over the end of the mattress and then along behind her back and around her sides.  Then the end comes up between her legs and up to her armpits, where it velcroes shut.  I have had to modify this after this photo as she figured out how to undue the velcro.  Now the velcro is at the sides and the front tucks over and behind the velcro.  You can google "Danny Slings" and purchase them ready made, but I couldn't do that!  I did order the wedge from Amazon though.

This is the first attempt with the wedge on top of the mattress - she is so strong she just sat up and lifted the wedge right off the bed! Now the wedge is under the mattress and her sling is "slung" to the mattress!


She was actually laughing in this photos as she was so pleased that she had thwarted my attempts to keep her in one place at bed time.  She still fights it and rocks and occassionally gets loose, but I have tweaked things so it hasn't happened for a while!  She is a little Houdini, that is for sure!

 I'll leave you with some photos of me working on the wedding decorations.  I created nearly 50 corsage type decorations for decorating the church, plus about that many unique corsages for the people involved!  I also made the tossing bouquet!  It was fun to learn, but man it was time consuming!  But learning this skill with my first daughter's wedding will reap great benefits with so many more daughters yet to be married!
And here is the last - watching Seahawks and the engaged couple while making corsages at our sons' apartment.  GO HAWKS!!!!

Eight Weeks Home, Christy Update!

Taking a nap at the park just last week!

I am shocked and surprised at how different her second month home has been from her first month home. Christy's first month home was mostly spent at home, where as the past 4 weeks have been insanely busy!  I am also shocked at how badly I did at taking photos of Christy (or anyone around here for that matter!).  I will have to do better!

Christy had an appointment with the ENT (Ear, Nose and Throat) specialist.  He said that someday she'll probably need her tonsils and adenoids removed since she does snore often, but that she felt that she was on the small side and thought waiting was the better choice, but also said that we might consider getting a second opinion at Children's Hospital in Seattle.  We talked it over, and due to her sinus congestion waking her more and more frequently as night, we feel that she needs to see the ENT at Children's.  This referal has been made, but I have not gotten an appointment yet.  After seeing the ENT her pediatrician wants her to also have a sleep study done.

Christy giving one of her goofy silly looks - this was taken yesterday

A couple days later Christy got to go with us to a local park to play with friends while the big people played volleybell.  Christy did so very well there, but did NOT like the swing (you know the one that is like a bucket with holes).  She was happy to hang out in her stroller or play on the grass.  She did manage to get over into the sand, but this mean mommy took her out before she could eat any!

The next week was very busy for me (Esther had a pre-surgery appt at Seattle Children's) and our family (we had a stomach illness run through about half of the family, but just one or two people at a time).  Christy had her first Physical Therapy evaluation that week too.  We found out at that appointment that it would be best to wait to get braces for her legs (to limit the range of motion as her knee are double jointed) until after she has learned to crawl.  As long as she is not weight bearing, she will not be damaging her knees.  Once she has learned to crawl, then we will be getting her braces to wear when she is practicing/learning to walk.  We have some exercises to do with her now to strengthen her legs and arms to prepare for crawling.

First time in the pool....

We had a busy Fourth of July weekend, with relative from out of state visiting in the area.  Christy got to go the beach for the first time, but it was very windy and she didn't like it at all.  She just wanted to be held.  Then we went to a family reunion (Daryl's family) at another park and she did much better there, but like best to be in her stroller.  

Last Tuesday we went to another park (Esther's Physical Therapist has recommended that we take her to parks frequently to help her built coordination and strength - and it's working!).  Christy was tired when we arrived (it was lunch time) so she took a nap in her stroller - first time she's ever done that!.  Someday I hope that she will begin to be able to explore parks, but right now it's really hard since she is limited to scooting around on her bum, and she puts everything in her mouth (a really bad combination since she has a very poor coughing ability so choking is a very real hazard for her - even here at home).

She Loves It!

Yesterday Christy was evaluated by our favorite speech therapists, Elaina.  We were greeted with excited hugs as we haven't seen her in a long time (Esther and Dayton both have seen her in the past).  Elaina confirmed that Christy does have some eating coordination issues and is also concerned with me that she is not gaining weight very well yet.  She has given me some things to do with Christy during meals to increase her awareness of her mouth, work towards self feeding and learn to drink thickened water from a cup.  I am also teaching her to sign "eat" and will work on saying "eat" and "water" to her when I am feeding her.  Elaina really wants to see her regularly but has a long waiting list.  They are going to try to get her on the schedule soon.

And Esther Loved having her in the pool!

Yesterday Christy experienced our pool for the first time and she loved it!  She loves taking a bath, but I wasn't sure if she'd like the cooler water.  But we've had an unusually warm summer so the pool isn't too bad.  She will definitely be following in Esther's foot steps and become a fish.  Carese, on the other hand wants nothing to o with the pool!

Christy has been staying at home more recently, but that is going to change as she has lots of appointments in the next few weeks - her dental evaluation at Children's. Physical Therapy once a week, plus our annual week long camping trip!  Plus we will making more appointments for her dental work and seeing the ENT.  

My baby girls, in PJs but not ready to go to bed quite yet!

Overall, Christy has been exceptionally healthy and has adjusted very well to our home and life.  I have found that she enjoys shopping when she is in her stroller.  Generally speaking, away from home her safe place is her stroller.  At home she loves to explore and even enjoys spending time in the yard and swinging on the swing set (in HER swing of course).  She gets lots of attention and enjoys play.  Hearing her laugh is just THE BEST!

 She also allows me to hold her hands together when I pray with her at betime - before she would resist and get mad at me!  The funniest thing is that she LOVEs to get dressed and undressed.  She giggles and giggles.  I will have to videotape this somehow.  She is getting very fast at scooting up to someone and raising her arm(s) to let them know she wants to get picked up.  She will even chase you down if you are avoiding her (for fun, of course).  

All tucked in and ready for bed!

She is a very content little girl.  She rarely cries.  She usually has more of an angry cry when she gets hurt or is in pain.  It is a strange cry - almost animalistic.  Its almost like a panic kind of cry.  It is very sad to hear and really hard since we quite often do not know the cause - she just can't tell us.  Even when we know the cause (like if we see her fall over and bump her head), it's hard because it's almost as if she doesn't understand how to receive comfort.  But she is improving in this area somewhat, and I'm sure with time she will come to understand and receive comfort from us.

 Christy and Carese are nearly identical in size.  Six weeks ago we found out that they were less than 1/4 in different in height and less than 3 oz different in weight.  Christy really has not grown noticeable yet so they are still like twins.  They wear the same size clothes (you can notice that Carese is wearing the same PJS that Christy is wearing in one other photo).  For a while, all the winter clothes were put on Christy, and the summer clothes on Carese.  But as the weather has warmed up, I am dressing Christy in lighter clothes so they are being dressed more similarly now as a general rule.

And now for two videos!  The first one was of Esther and Chrisy playing together, really for the first time.  This has been the biggest change in Christy's life in the past month.  Esther no long ignores her and actually loves to play with her.  At random times we will find Esther sitting down next to Christy and just giving her hugs - it is so sweet!

The second video is ground breaking stuff!  Christy is slowly but surely gaining more use of her right leg/foot and arm/hand!  In the last video, you will see her use her right hand/arm to shake a rattle!  We did have to put the rattle in her hand, but she kept it and moved it enough to create sound, and she knew she was doing it!  This is miraculous!