The book list - March

March's book list has three completely unrelated books.  But I thoroughly enjoyed each one!  I love my busy days with my kids, but at night, there is nothing like sitting down with a book - in complete silence! - and just escaping and learning things on my own for awhile.  I really need that.

My red-white-and blue garden (though the blue is really more like a purple).  I love bulbs - plant them once and they keep coming back!

Sergeant York and the Great War by Sergeant York - This is a reprint of Alvin York's life story and war dairy, which were originally edited by Tom Skeyhill in 1930.  Tabby and I read this for her online history class.  The book is written in York's own words - bad grammar and all.  (He only had a few years of formal education.)  His poor spelling and grammar bothered Tabby, but for me, it added to the authenticity of his story.  York grew up in the mountains of Tennessee, along with his 10 siblings.  He and several of his brothers bummed around and drank way too much alcohol for a bit, much to their mother's sorrow.  (Their father had died by this point.)  But then York became a Christian and turned his life around.  He, as many people who lived where he did, had learned to shoot at an early age.  His skills of shooting and hunting came into play when he was drafted into the army in World War I.  He tried to get out of the military by being a (religious) conscientious objector.  But his understanding of this changed over time and after a number of discussions with his superiors in the army.  Soon he found himself in France, in the trenches.  His amazing shooting skills allowed him to take out a number of German machine gun nests and capture over 100 Germans.  I could go on and on about this fascinating book, but I better stop.  :)  Note that Gary Cooper starred in a 1941 movie version of York's life during the war called Sergeant York.  (Though there are inaccuracies in the movie, it is still a good movie over all.) 

We hope to be buying baby chicks this week!  We have two hens that seem to be broody.

The Life-Changing Magic of Tidying Up:  The Japanese Art of Decluttering and Organizing by Marie Kondo - I reserved this book at my library, but after waiting for a couple months for it I decided to just buy a copy.  I'm so glad I did as it is now one of my favorite books!  This book is translated from Japanese and has a unique approach to "tidying up."  The author's personal story is woven throughout the book and I found her so interesting.  She became fascinated by cleaning up and organizing when only 5 years old!  This is something she worked at and researched as she grew up, and is now a personal cleaning consultant.  This book presents her methods to declutter and organize for good. In the KonMari Method, you organize by categories rather than a room-by-room or little-by-little approach.  (The book also offers an interesting peek into Japanese culture.)

This book came along at a perfect time for me.  For many months now I have been particularly feeling strangled and weighed down by all our stuff.  I am so tired of shifting stuff from here to there and things never staying tidy for long.  It seems that stuff just piles up faster than I can sort through it and deal with it properly.  (Possessions really can be a curse.)  All this saving things in case we might need it one day - well that isn't practical when your house is about to explode from the amount of stuff!  I feel like the rat in the wheel that just keeps spinning and I just want to crawl under something and sob and admit defeat.  Do I sound overly dramatic?  Well it's how I feel right now.  In my dream world, everyone would leave and I would have one month to completely go through everything in our house uninterrupted.  I'd rent a dumpster and purge away.  Of course that isn't realistic and I'd miss my family terribly!  Sp I am slowly trying to chip away at things.  Hopefully I can pick up the pace later this summer, when we take a break from homeschool.

Solomon loves playing in the sandbox

 It's No Accident:  Breakthrough Solutions to Your Child's Wetting, Constipation, UTIs, and other Potty Problems by Steven J. Hodges, MD - Earlier this year, I read this blogpost on the Kitchen Stewardship blog.  My interest was perked because my 6-year old son still has to wear a pull-up and wets almost every night.  He finds this VERY upsetting and discouraging, to put it lightly.  My 2-year old is never dry at night anymore, which has been a bit surprising because as a baby, it was not unusual for him to stay dry overnight.  Well, the doctor and author of this book claims that almost all problems with overnight wetting are due to ... constipation!  (And yes, your child can be constipated even if they are "going" once a day.)  Not only does constipation cause overnight wetting in older kids, but it is also usually the culprit in childhood urinary tract infections in others.  (This was fascinating to me because so many children with Trisomy 18 struggle with UTIs.  And almost all have constipation problems!) So what is the solution?  Major cleansing with laxatives or enemas.  (Enemas are recommended as the quickest way, but here in America, they are NOT popular anymore.)  Diets with a lot more fiber.  And lots more exercise! 

I will probably post about this more in the coming month or so, as I have been following the treatment with my sons for a week now, and am already seeing good results!  I know this isn't something talked about much, but if it works, this knowledge really does need to be spread.  If these are things your child struggles with, I highly recommend you buy the book right now.  I was surprised just how fascinating it was. (!)  The author has a great sense of humor.

Hunter is showing his "pet" LED lights the 3 mason jar lights he assembled to sell

Here is the latest collection of lamps for sale from Hunter's Bright Lights!  They are put together using VINTAGE mason jars as the lamp base!

Note that the lamp on the right, with the reddish shade, has already been sold.  If you are interested in one of the others, please contact me.  Prices are as follows (does not include shipping):

1) Brown lampshade, clear mason jar that says "mason" and has an "H" and ship's anchor on it, jar is filled with blue and green "gems".  Cost is $33.00 (or $28.00 WITHOUT the gems)

2) White lampshade, blue mason jar that says "Ball Perfect Mason" on it.  Cost is $28.00.  (I think this lampshade would look really cute dressed up with a red gingham ribbon glued around it.)

The Book List - Februrary

Well since it's almost April, I better get February's book list posted!  In looking at my list I realize that almost all the books I actually completed were books I read for Tabby's history and literature classes.  I really enjoyed every one of them! 

Living room mantel decorated for St. Patrick's Day - I borrowed Tabby's green vase collection and Kewpie doll

Carry a Big Stick:  The Uncommon Heroism of Theodore Roosevelt by George Grant - "Leaders in Action" book series - I've heard this author speak in the past (at the annual Association of Classical Christian Schools conference) and thought he sort of rambled and jumped from one thing to another.  So I wasn't sure if I would like this book.  But I did.  I thoroughly enjoyed it - the writing style was fast paced and interesting.  I learned a lot about Teddy Roosevelt and found him utterly fascinating.  And wow - this man would read 5-8 books PER WEEK!  (Books like this are such a superior way to learn about history, rather than the common textbook!)  I'd like to read some of the other books in this series - Tabby has also read Never Give In:  The Extraordinary Character of Winston Churchill by Stephen Mansfield and liked it. 

Hunter serves "breakfast" to his nightlight collection

 Journey to America by Sonia Levitin - This is a fantastic book about a Jewish family in Germany that flees from Berlin in 1938.  The father is able to go right to the United States.  The mother and three daughters make it to Switzerland and stay there, waiting for the father to send for them.  Many hardships are endured.  The author herself fled Germany when she was young, with her family.  Tabby and I liked this book so much we want to read the other two books in the series.  I think one reason this book was extra exciting for me to read was that I knew that so much of what was written in it about Switzerland was accurate.  Way back before I began having babies, I helped my dad with a lot of research about Switzerland in the 1930s and 1940s.  The result of that research has been two books:   Target Switzerland: Swiss Armed Neutrality in World War II and The Swiss and the Nazis: How the Alpine Republic Survived in the Shadow of the Third Reich by Stephen Halbrook.  (The second book is my very favorite.)

Tabby walking a guardrail

 Number the Stars by Lois Lowry - Yipee!  Another book about World War II.  And best of all - the Danish resistance is part of the story!  (My favorite time period to read about is WWII and throw in the resistance - I just love it!)  This book is told through the eyes of 10-year old Annemarie, who lives with her family in Denmark.  Her family helps smuggle out a Jewish family to Sweden.  This is just one example of the MANY people in Denmark that helped Jews escape.  Almost 7000 Jews were smuggled to safety during the Nazi occupation of Denmark. 

A lily bulb is coming up in Lilly's garden!

31 Days to a Better Marriage - Fall 2014 series by ManagingYourBlessings.com - Relationships are tough.  When I saw this e-book being offered for free, I decided to download it and read it.  (This is where I got it.)  This book was a quick read on a variety of topics.  Some good practical ideas and reminders.

yummy frozen blueberries

 The Wright Brothers: Pioneers of American Aviation by Quentin Reynolds - Landmark Books series - Wow - this book was fantastic!  (I hope to read it to Hunter soon as so much of it made me think of him.)   I've never read a whole book about Orville and Wilbur Wright before and found their story utterly fascinating.   They both had such excellent character (something harder to see in people these days) and were dedicated, driven, hardworking, and thoughtful.  They loved their mother dearly and she had a lot of positive influence on them.  As boys, the brothers would spend their summers working to earn money in order to buy parts and things they needed to build their inventions.  From sleds, to kites, to a printing press, a paper folding machine, to bicycles, and then planes.  One day, when my boys are older and can appreciate it, I'd like to take a little trip to Kitty Hawk, NC to see the place where they first tested their airplanes. 

Ruffle scarves and Elderberry syrup

Tabby has been on a ruffle scarf making kick!  These have been pretty good sellers for her, though usually through word-of-mouth rather than her Etsy shop.  Contact me if you would like to purchase one - cost is only $10.00 per scarf plus postage:

Tabby also wanted me to share this recent drawing she did of Obi-Wan Kenobi (from the Star Wars prequels):

I think that picture is good, but I really like this picture she drew last week of Caleb, a little boy that had Trisomy 18.  She drew this as a gift for his family, who celebrated his 6th birthday, honoring him in heaven):

It may seem a little pointless to post about a wonderful immune boosting syrup at this time of the year.  Spring is FINALLY here and we're all supposed to be healthy now, right?  We made it through the winter with very little sickness, but all my kids had colds earlier this month, so I am going to go ahead and share this anyway.

For years, I have liked and used BerryWell, a product by Beeyoutiful.  It is a wonderful Elderberry syrup that fights against colds, flus, and all sorts of viral infections.  It's such a popular syrup that Beeyoutiful has trouble keeping it in stock in the winter.  This past winter, they came out with a BerryWell Kit so that you could make your own syrup.  This webpage includes the recipe.  I was so happy to see this as I already had most of the products needed.  I have made several batches so far and think it's been excellent at both keeping sickness at bay and bringing quicker healing.  Elderberry is even safe for children as young as one.

You can read an explanation of why Elderberries, raw honey, apple cider vinegar, Echinacea, and bee propolis are so great for battling illness on the Beeyoutiful site here. 

I enjoy making the Elderberry syrup.  The Elderberries cook up so pretty:

I store the finished syrup in bottles, for easier pouring:

If you want to make a super easy version of Elderberry syrup, using just Elderberries, apple cider vinegar, and honey, see this recipe from The Haven Enterprises. 

Smile! Today is Trisomy 18 Awareness Day

 

This is Trisomy Awareness Month.  Trisomy means "three" and March is the third month of the year.  Today is extra special to me because it is the 18th.  That means today is Trisomy 18 Awareness Day.  Trisomy 18 means that there are three copies of the 18th chromosome instead of the usual two.

Sometimes I feel weird/wrong for continuing this blog because it started as Lilly's blog.  The place where I could update friends, family, and other interested people with what was going on with her.  We simply couldn't keep up with all the inquiries!  But then it also became a sounding board for me to share with the world about Lilly's life and to show that about 10% of babies with Trisomy 18 can live to see their first birthday.  (And I know a number of other children that have T-18 that have lived way past their 1st birthday!)

Not only did I want to let people know what our specific prayer requests for Lilly were, but I wanted to document her life both for our family, and as a help for other families coming into the Trisomy 18 world.  Another thing that I wanted to share was that special needs children are not a burden to their families, but that we enjoyed them and they enjoyed us.

Over the past 4 years, I have gotten a number of emails from mothers who were pregnant with babies

that had been labeled with Trisomy 18.  Several of these mothers were struggling with whether or not to abort their babies.   Interestingly, these mothers all wanted to keep their babies, hoping ultrasound was wrong.  But they all had people in their lives who were pressuring them to abort their babies.  It was sometimes their husband, but usually it seemed to be outside family members.  In one woman's case, it was the physical therapist of one of her children!  (Why anyone feels they have the right to tell someone else their opinion about something like this is beyond me.)

All of the abortion pushers expressed concerns about what the Trisomy 18 baby would do to the family.  (If anyone was concerned about the baby itself, the moms writing me did not express that.)  So the moms wanted to know things like:  Did Lilly tear apart our family?  Were my other children damaged because of Lilly's life?  Did we resent Lilly?  Was it a relief when she died?  Would I make the same choice to have her?  Did she just take up too much of our time?  Etc.

I responded to these emails the same way that I hoped I came across in my blog posts.  We ALL LOVED Lilly!  No one in our family resented her.  Tabby and Hunter adored her and never complained about her.  She bonded us all together as we fought for her life.  We were proud of her.  No one resented the extra time she took.  We all loved to help her.  Lilly's life blessed us in many, often surprising! ways, and still continues to bless us.  We are all better people because of Lilly and we still thank God for her!

I could go on and on but I think I made my point.  These special children are not a burden - they are a blessing.  No matter how long or short their life is, it will change you.  Bless you.  They are worth the heartbreak when you lose them.

 Oh - and in spite of what many people out there seem to believe - these little "retarded" babies really do have feelings and can express love and delight.  Lilly could smile and laugh.  She responded to our voices.  She loved watching what everyone was doing.  She was curious about things.  She liked routine.  She loved her physical and occupational therapy sessions and working hard.  And she had very strong opinions about how much she hated being in hospitals.  :)

 I could go on and on about this topic, but I will spare you.  ;)  So today, for Trisomy 18 Awareness Day, I just want everyone to know - YES, THESE CHILDREN ARE WORTH IT!

The Geneva Declaration - End the label "Incompatible with Life"

Words are powerful. 

"The pen is mightier than the sword" (Edward Bulwer-Lytton, 1839).

"There is one whose rash words are like sword thrusts, but the tongue of the wise brings healing." - Proverbs 12:18

"Death and life are in the power of the tongue . . ." - Proverbs 18:21

"Gracious words are like a honeycomb, sweetness to the soul and health to the body." - Proverbs 16:24

"Incompatible with Life."

Our Lillian Eva - shortly after her 1st birthday (July 2011)

Babies with Trisomy 13 and 18 are known in the medical field as being "incompatible with life."  87% of parents are told this about their babies, even though survival rates are between 5-40%.

I consider us blessed that we never were directly told this about Lilly.

That doesn't mean all the doctors we encountered had a positive outlook for Lilly.  She was refused treatment at times.  We got to hear things like it was "unethical" to treat her because she was going to die soon.

Imagine that at the first ultrasound your parents had of you, or when you were examined at birth, you had the words "this baby is INCOMPATIBLE WITH LIFE" pronounced over you.

It is a death sentence.  Discrimination in the extreme.  Who would treat a baby that is "incompatible with life?"  What would be the point?

photo credit - all photos today - Steve Rubin Photography

This coming Wednesday, March 11, 2015, there will be a global initiative to end the label "Incompatible with Life."  This presentation will occur at the United Nations in Geneva, in association with the European Centre for Law and Justice.

The Geneva Declaration on Perinatal Care states:

"As medical practitioners and researchers, we declare that the term 'incompatible with life' is not a medical diagnosis and should not be used when describing unborn children who may have a life-limiting condition. 

We acknowledge that there exists no medical necessity to terminate such pregnancies in an otherwise healthy mother. 


We fully support the development of perinatal hospice services for families who are told that their unborn children may not live for very long in the womb or after birth."

As the parent of a Trisomy 18 baby - that was such a blessing - I signed this Declaration here:  http://www.genevaperinatalcare.com  (It only takes about a minute to do!)

Getting rid of this label will undoubtedly save lives as there would never be any hesitation in treating them.

Homeschooling: stick figuring through the Bible

Like so many homeschoolers, we start off our learning time with some Bible reading together.  And like some of these same homeschoolers, it was one of the most difficult parts of our day.  It seemed that no matter what I tried, the kids suddenly started acting possessed during this time!  I was ready to  start cursing and throw everything out the window.  Literally.

As I was mulling over this in prayer recently, an idea popped into my head.   I remembered how about 6 years ago, I used GrapeVine Studies with Tabby during our morning Bible time and that she had enjoyed it.  This is a very simple curriculum that takes you through the Bible by focusing on the Old Testament, New Testament, or another topical study (see this link for the selection). 

Each week's study is for five days.  I read several scriptures, then my kids make simple drawings - using stick figures - to illustrate highlights.  There are one or two drawings a day.  There is also a memory verse for the week, and one day has questions to review that week's stories.

This week we have been continuing in our study of John the Baptist and Jesus.  Here is Tabby's illustration showing John baptizing Jesus:

GrapeVine offers their studies in several levels, according to age.  I wanted to just stick with one level and have everybody doing the exact same thing so I picked level one of the New Testament Overview.  (My kids ages are 13, 6, and 2.)  I bought the e-book and printed a copy for each child, and put the printouts into 3-ring binders.

Most mornings, Solomon likes getting everyone's notebooks out and putting them on the table.   He's an orderly little guy, and I love that he took charge this simple job:

The first couple weeks we did this, Solomon wanted me to help him draw his pictures.  I held the pencil with him and we drew together.  Then this week, he suddenly wanted to draw the stick figures on his own.  He draws a head and two really long legs for each person.  Progress!

Hunter, not surprisingly, has to embellish his drawings.  After our lesson, he draws some kind of machinery type boarder on his page.  This one has a bunch of fire alarms on wheels:

(To the right in the picture - Hunter's new thermostat watches him draw.  Yes that's a thermostat with a happy face drawn on it.  He bought it used off Ebay for just under $5.00.)

So the big question - how is this working for us?  AWESOME!  The kids listen more attentively when I read, then their hands are busy drawing.  Not getting into trouble.  On Saturday's, Hunter goes through his pages from the week and tells Frank the story.  I've been pleased with how much more he's retaining.

Do you have to use the GrapeVine Studies curriculum to do this?   Of course not, you can do this on your own.  But with my life's current circumstances, it was is helpful to have everything already laid out for me.  THANK YOU GrapeVine! 

I've also been thinking of applying the stick figuring method to some of Hunter's other schoolwork, and using notebooking pages to do so.  So that will be something I try soon.

"All Scripture is given by inspiration of God, and is profitable for doctrine, for reproof, for correction, for instruction in righteousness, ¹⁷ that the man of God may be complete, thoroughly equipped for every good work." - 2 Timothy 3:16-17

Snowmen and grief revisited

We got more snow Wednesday night.  It had rain mixed in and was slushy.  BUT ... it was good enough to make a small snowman.  Solomon was thrilled!  He has had a hard time understanding why none of the recent snows were "snowman snows."  Every kids book you look at that has snow in it, always has a snowman.

Solomon thought his John Deere hat was the perfect hat for a snowman.  (It was mainly for photo purposes though - couldn't leave it there or the puppies would tear it up!)

Then Solomon took great delight in smashing the snowman.  Ha-ha-ha ...

The snow and snowman made me remember Lilly and a picture I have of her by a snowman:

Lilly - December 2010

I don't know if Lilly ever saw that snowman - the snow was so bright she wouldn't open her eyes!

"Oooooh!  That's bright!  Mama - where are my sunglasses?"

Yesterday I was heartbroken to read that little Mary-Margaret had gained her angel wings very early that morning.  (Mary-Margaret's family received one of our "angel box" donations last year.)  Mary-Margaret had Trisomy 18.  She lived 5 months and 1 day.  That is a life that was way too short and yet for a baby with T-18 I know she lived longer than most.  Please pray for her family.

sweet Mary-Margaret

I always feel a sad, sharp pain whenever I read about a child with Trisomy 18 dying.  (Any child's death is sad, but the ones with T-18 are just so close to home, I guess that's why those hurt the most.)  It's like a wound that can never fully heal gets stabbed again.  Because I know what it feels like, I just hurt for the family.  I think of what they must be going through.  And then I end up with flashes of what we went through when Lilly died.  I think of our babies in heaven.  So awesome for them.  So sad for us.

But I guess it's all "normal."  Sigh.  Just because it's "normal" doesn't mean I like it. 

I'm sure many of you reading this understand.

"The LORD is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18