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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, April 20, 2015

A God painted sky

Tonight we had a brief but heavy storm.  After it ended, Tabby said that the sunset looked beautiful.  I grabbed my camera and we ran out to the road.  It felt like we were in one of those Thomas Kincade paintings showing light after a rain.  Sun streaks in beautiful colors painted the road.  The cows in the pasture across from us grazed in a large halo of light.  Beautiful.  Way too beautiful for my camera to capture.  But here are some of its attempts:






I love little blessings like this.  A few minutes of escape from a normal busy day can really bring a feeling of peace and calming over me.

"They who dwell in the ends of the earth stand in awe of Your signs;You make the dawn and the sunset shout for joy." - Psalms 65:8
They who dwell in the ends of the earth stand in awe of Your signs; You make the dawn and the sunset shout for joy. - See more at: http://bible.knowing-jesus.com/topics/Sunsets#sthash.4kpqsiBW.dpuf
They who dwell in the ends of the earth stand in awe of Your signs; You make the dawn and the sunset shout for joy. - See more at: http://bible.knowing-jesus.com/topics/Sunsets#sthash.4kpqsiBW.dpuf
They who dwell in the ends of the earth stand in awe of Your signs; You make the dawn and the sunset shout for joy. - See more at: http://bible.knowing-jesus.com/topics/Sunsets#sthash.4kpqsiBW.dpuf
They who dwell in the ends of the earth stand in awe of Your signs; You make the dawn and the sunset shout for joy. - See more at: http://bible.knowing-jesus.com/topics/Sunsets#sthash.4kpqsiBW.dpuf

Saturday, April 11, 2015

Peep peep peep! Our new chicks - fuzz, fun, and murder

If you saw Tabby's blog post today, you already know what I'm going to post about.  :)  

Buying chicks is probably my favorite springtime tradition.  (This is our 3rd year doing so.)  Yesterday was the day!  The kids and I went to the feed store right after we finished our schoolwork.  Less than an hour later, we were home with a baker's dozen of cute fuzzy chicks:


We bought:

3 black Austrolorp
2 gold Sexlink
3 Buff Orpington
3 Ameraucana
2 Gold Lace Wyandette

We had two broody hens so we planned to have one raise the chicks.  We did this once before and it worked beautifully.

Tabby carefully slipped the chicks under Precious.  She is our experienced mama and did a terrific job raising a flock of chicks last spring.

Precious sitting on 13 chicks

Precious sat on the chicks for a bit.  One kept escaping though.  Tabby named that adventurous one "Indiana."  (Indiana Jones)  Our nesting boxes aren't a good set up for this, so just like last year, Tabby carefully moved Precious into a big dog cage with the chicks.  However, unlike last year, Precious started freaking out.

She kept pacing around in the cage and just wouldn't settle down.  We left her there for quite awhile hoping she would go back to the chicks, but she never did.

Precious pacing after she quit her job
So Tabby fired Precious hired our other broody hen, Beru.  She carefully set Beru down on the cluster of chicks and ... success!  Beru sat there looking so proud.

We kept a check on her - occasionally when a chick tried to slip out she'd make a warning sound and give a little peck at it.  She was doing good.

But then a bit later,  I noticed a few chicks had escaped.  Tabby and I discussed it and she felt like the chicks would probably go back to Beru since the other chicks were still under her.

Beru - sitting alert and proud (or is it plotting ...)
But then later in the afternoon, chaos broke out in the cage.  Beru had suddenly gone ballistic!

I heard a terrible squawking from Beru and the peeping noises from the chicks greatly increased in volume.  I ran out to see what was wrong and the chicks had rushed to the front of the cage and several had their heads through trying to escape.  Crazy Beru was in the back and pecking at a chick which such fierceness that the chick was bouncing into the air!

What in the world?!  Beru had rejected the chicks.  So I rejected Beru and grabbed her out of the cage, and tossed her back into the yard with the other hens.

I scooped up the little chicks that were in a panicked huddled mass and put them back in the box that we brought them home in.  I counted.  Nine-ten-eleven-twelve.  Thirteen?  Where was our number thirteen?

Then I found the poor little (Ameraucana) in a tiny heap in the straw.  She was still alive, but barely.  I quickly got a soft warm cloth, wrapped her in it, and held her in my lap.

Beru's victim
Sadly, after a bit, she raised her head, gasped, and died.

Tabby and I narrowed our eyes and glared towards the coop, where Beru had run back to.

Murderer!

We will never look at that hen the same.

Sooooo ... no fun (and convenience!) this year of watching a mama hen raise some biddies.  We got out a big tub, the heat lamps, and set things up.  Thankfully the chicks were very happy in this new - safe! - home:



I peeked at them later that night and they were snoring away.



Monday, April 6, 2015

Easter experiments with marshmallow Peeps

I don't think I will ever go through an Easter day without remembering how cute Lilly looked in her bunny hat.  The bunny hat is now tops my Lilly tree (April's theme is lilies and crosses):


And of course I can't post that picture without posting several of Lilly herself wearing her bunny hat.  I remember that she was pretty grumpy at me for putting her in that basket!  She wore that same dress with her bunny hat to church on Easter Sunday 2011.  The one Easter we were blessed to have her with us.




I used to like decorating for holidays with a lot of decorations.  Now all that feels too overwhelming and burdensome and makes the house even more cluttery looking.  So if I put up a wreath and decorate my mantle, and of course Lilly's tree, then that is enough. 



Last Friday, for our science experiment, Hunter and I had fun using marshmallow Peeps.  I have had a box of them on my pantry shelf since last year (!) that I had bought with the intention of making one of those cute Peeps miniatures.  But it never happened.  So when I came across experiments to do with Peeps on Pinterest, I decided to sacrifice those cute marshmallow chicks.  (Note that all the follow experiments originally appeared on this blog.)

First was the microwave experiment.  I asked Hunter what he predicted would happen if we cooked Peeps in the microwave for 1 minute.  (He said they would melt.)  Into the microwave two chicks went! 


We were surprised at how BIG they puffed up while cooking.  Then when they were done and I opened the door they looked bloated like this:


They also stunk really bad!  A pretty-awful-burned-marshmallow-smell.  I went ahead and took them outside and put them into the trash can.

Next we got 4 bowls, put a Peep in each one, and then filled each bowl with a different liquid.  We used:  water, vinegar, milk, and apple juice.  (This is one time I wished there was soda in the house - that would have been a good one to use.)  We talked about which liquid might dissolve the Peeps the fastest.


Uh guess what.  None of the liquids actually dissolve Peeps!  The milk and water made some of the coloring come off.  But the next morning, those marshmallow chicks were still floating around and nothing had changed.  However, we did have one completely unexpected result ...  ANTS:



Note that the ants preferred the apple juice!  None liked the vinegar ... surprise surprise ...

Our last experiment used two of the cheapest, most exciting ingredients ever to be combined:  vinegar and baking soda.  Seriously!  Hunter would keep combining these two things for hours if I let him.  Three Peeps, sprinkle in baking soda, and pour on the vinegar:




All that wonderful fizzing and bubbling did nothing to the Peeps other than to makes some of the green coloring come off.  So we decided to up it and drop in a few Alka Seltzer tablets:



Lots more fizzing!  But ... no changes.  Even today - 3 days later - the Peeps look the exact same.  (Though the bubbles are gone and they are floating in smooth liquid.) 

This has led Hunter and I to conclude:  "YUCK!  Is it even possible for Peeps to dissolve in our stomachs?!" 

I will never look at Peeps the same.  ;)

"The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him." - Psalm 28:7

Saturday, April 4, 2015

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.)

Friday, March 27, 2015

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. 

Tuesday, March 24, 2015

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

Wednesday, March 18, 2015

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!