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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

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 - 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!

Monday, March 9, 2015

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:  (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.

Wednesday, March 4, 2015

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