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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

Thursday, February 28, 2013

Homeschool tip: Geography by pictures

Quick question:  What country is shaped like a boot?  If you're like most people you thought "Italy!"  That country is so easy to recognize on a map because it's a "boot"!  What if you could see pictures in all the other countries of the world - could you recognize them?  Tabby and I just learned to map the entire continent of South America by seeing the countries as little pictures.  For example,  I don't think I can ever look at Venezuela without seeing the front of an elephant, and Guyana as it's "leg." 

Last year I invested in a geography curriculum called Visualize World Geography (  I was a bit hesitant because of the price, but I reasoned that I'd have at least 3 children using it.  Plus me.  And wow - how handy to know where most, if not all, of the countries in the world were.  (Hunter especially always asks me where places are.  I have to keep an Atlas nearby at all times.)  Each week we watch a short DVD segment which contains something about the country to help you remember it.  (Such as the elephant for Venezuela!)  And then there is a short segment about the country that has interesting facts.  We watch those one day.  Then the next day I have Tabby color the flag for the country and label the country on a map of the continent.  Then on Friday's she fills in a worksheet while re-watching the portion about the country.  (You can do lessons a number of ways - there's a bunch of things that come with the set.  Just see their website.)  (Oh - I'm not sure which curriculum set we have - when I bought it I only remember there being one version.)

After completing the South America section, Tabby labeled the continent using the picture map:

Then a couple days later I gave her a plain map to label.  It was very easy for her to do.  (And me too!)

Knowing geography helps so many things make more sense when you are reading about places or hear about them.  

On a completely different topic, I mentioned again my problem with my diastasis recti muscle in my last post.  (Split stomach muscles from pregnancy that still are not healed back together so I look slightly pregnant.)  A friend just did a post about healing her diastasis by using a different program than the one I have been using (and have gotten burned out on).  Here is Trina's post.  I am going to give the program she used a try - I started it today and it took so much less time!

Tomorrow is March 1.  That begins Trisomy Awareness Month.  I told Tabby we are going to work very very hard to finish up our big Lilly project donation boxes to the hospital this month.  If only I didn't keep having so many more ideas of things to add.

Do you ever get overwhelmed by your own ideas?  I'm grateful God gave me so much creativity and imagination.  But honestly it can be overwhelming at times!  It seems the ideas for new projects, etc. just never stop.  I'm learning to write them down ... maybe one day there will be time for them all.  

"Employ whatever God has entrusted you with, in doing good, all possible good, in every possible kind and degree . . . ."  John Wesley

Sunday, February 24, 2013

Lilly's paper star

There is a Trisomy Families Annual Celebration coming up in a few weeks in Minnesota. The organizers invited those that couldn't attend, or had had their Trisomy loved one pass away, to send a star to the celebration to be included.  I made Lilly's star today:

Crafting for Lilly.  It was fun, therapeutic, and I found myself singing the songs I liked to sing to her as I cut and glued.  Only then that made me cry.  Sigh.

Weight check!  If you read this blog during Lilly's life, you know I often started a post  with "weight check" and I'd give Lilly's weight, as she fought for every ounce she gained.  Well the "weight check" this time is for me.  Though I won't tell you what I actually weigh as I'm sure no one is interested, haha.  But last month I shared about how I've been losing a lot of my post-pregnancy weight by following the Trim Healthy Mama book suggestions.  At first I was losing about 5 pounds a week.  Now it's leveled off to an average of 2 pounds.  Not bad at all!  I only have 5-8 pounds to go.  Now if only the diastasis recti muscle in my stomach would heal faster so I would look skinner ...  (My fault there, I've slacked off on the exercises.  Must ... rededicate ... myself ... again ...)

During Lilly's life, I shared a couple times about Samaritan Ministries, our non-insurance Christian medical needs sharing group.  (We do not have traditional health care.)  It is a wonderful group to be a part of.  Not only do you receive money towards your medical needs, sent directly by other members in the group, but you get their prayers too.  I think it was last fall, someone asked Frank if we still owed money for Lilly's huge medical bills.  He was able to tell them they were all completely paid off, thanks to our being a part of Samaritan Ministries.  The other day, a mom of 9 children posted about their being a part of Samaritan Ministries and gave a lot of details about being in the group.  If you'd like to learn more, read her post here.  (Her blog is Large Families On Purpose.)   

Today I dug up some daffodils from our woods and planted them where I could see them from my kitchen window.  So exciting to know that spring is coming!  I love the change in each season, but spring is the most beautiful.

[God speaking] “As long as the earth endures, seedtime and harvest, cold and heat, summer and winter, day and night will never cease.” - Genesis 8:22

Thursday, February 21, 2013

Another fish tragedy and homeschool tip for beginning readers

Tragedy struck earlier this week when Tabby's Betta fish Peacock died.  Tears flowed until Tabby was able to bury him properly.  She was furious at Betta fish for not living long. (This is her second one that died.) But in the next breath she said she was buying another one.  So yesterday a new Betta fish named Sunrise moved into the late Peacock's humble abode.

Welcome Sunrise.  We hope you'll stick around awhile.  A long while.

Where is Solomon??

Peek-a-boo!  (or as we say "peep eye!")

I was a bit surprised recently when Solomon started playing this game with me!  He likes to do this while I'm changing his diaper.  What fun!

I am very much a "phonics person." That's how I taught Tabby to read and that's what makes the most sense to me.  However Hunter is learning many words by sight.  I'm certainly not going to discourage that.  As long as a child wants to learn - feed them!

A couple years ago, we bought some old psalters from our church, when they were replacing worn out copies.  We have made one of those copies Hunter's.  Each week we find out the psalms/hymns that we are going to sing the next Sunday. 

I take that list and then go through the psalm or hymn and highlight all the words Hunter knows.  (I don't do words like "the" or "and", etc.)  Then while we are singing that song at church, Frank or I hold the book where Hunter can see and move our finger under the words as we sing.  Hunter doesn't always follow along, but he often is happy to see words he knows and sometimes even points out words I missed.

During the sermons and during family Bible reading time at home, we allow him to highlight or underline words he knows in his Jesus Storybook Bible.  He usually does a really careful job looking for the words he knows and marking them.

Children become interested in words at different ages.  I think many children would enjoy this activity.

Monday, February 18, 2013

SOFT's updated website and fun with piZap

The Support Organization for Trisomy 18, 13, and Related Disorders (known as "SOFT") has redone their website.   I think it looks great - it has smiling Trisomy children on the home page.  This is so important!  Especially for expectant parents desperately searching the web trying to find out information on a frightening diagnosis they may have just received for their baby.  I wish I had found this - it would have given me HOPE.

Our Lilly is in the "Family Support" section.  Both under the video and blog section (this blog is listed) and in the photo gallery.  (She is currently on page 6 of the photo gallery.  See Lilly's 3 pictures here.)  Smile, what a pretty little girl she was!  I want to add a short story about Lilly to the Family Stories page.  And also to upload one of my favorite Lilly videos - the one of her laughing at her caterpillar, Hank.  Again, I think these things can encourage searching families to have HOPE.

Tabby has learned about an online photo editor from her friend Cassie.  It is called piZap.  Both girls are enjoying making special photos of their little sisters, both angels.

Tabby made this of Lilly:

Cassie made one for Lilly:

And she also shared this one of her angel sister, Hannah (who also had Trisomy 18):


Tabby and Cassie are both very creative and I think making things like this is a very good outlet for them.  I'd like to try some designs myself when I have some extra time!  (hahahahaha about extra time I know!)

I was just thinking this morning how thankful I am to Jesus, knowing that He is taking perfect care of our little girls. 

Thursday, February 14, 2013

Lilly's Chocolate Heart

Happy Valentines Day from heaven!

I made the above digital scrapbooking page with My Memories Suite software. It was fast and easy!  (My original post about the software is here.  If you're interested in learning more about the software or buying it for $10 off, click on the upper right button that says "My Memories" on this blog.)

We started our Valentine's Day off today by reading Kevin Henkes' book Lilly's Chocolate Heart.  This sweet, short book is a family favorite.  And of course we had to eat homemade chocolate hearts while reading it!  Yum - we're going to make this an annual tradition.

At Lilly's first hospitalization for a virus, the speech therapist there gave Lilly a swallow study, which she passed.  This sweet lady seemed quite taken with Lilly.  We saw her and worked with her again at Lilly's next hospitalization for a virus.  The therapist had a son Hunter's age at home.  She told me that at that time, his favorite book was Lilly's Chocolate Heart. And that every time she read it to him, she thought of our Lilly.  So of course I had to get a copy of the book.  Hunter was delighted with the story.  (Especially the page with the picture of a radiator heater.  Those of you who know him won't be surprised about that.)  And really, we all enjoy the story.

Next Hunter did some Valentine's math, where he estimated, counted, and sorted, and recounted hearts, and recorded it all on his worksheet:

Then Tabby joined us for a little Valentine's craft involving coffee filters, markers, and a water dropper.  (They love anything that involves the water droppers - I have a box of them that I used to use to give Lilly water to drink with.)

I got the ideas about the math work and craft project from No Time For Flash Cards.  (Great ideas for little ones, though even Tabby, who's 11, enjoys some of them.)  Another Valentine idea I took that we're having fun with are supper "conversation hearts."  I took foam shaped hearts and on one side wrote things like you see on the candy conversation hearts (like "too sweet", "too cute", "xoxoxo", etc.)  Then on the other side I wrote questions such as "Who is your favorite person in the Bible?" "What is your favorite time in history to learn about?" "What is your favorite season?" etc.  I hung them on a ribbon with clothespins and the kids get to take turns picking one for us to discuss at supper each night.  (I have a ribbon of hearts on the other side of the window too.)

Solomon loved being a part of all the activities, though he finally had enough.

"Owe no one anything, except to love each other, for the one who loves another has fulfilled the law." - Romans 13:8

Monday, February 11, 2013

Angel Unaware

"Be not forgetful to entertain strangers: for thereby some have entertained angels unawares." - Hebrews 13:2

Did you know that Roy Rogers and his wife Dale Evans had a little girl named Robin Elizabeth that lived only 2 years?  She had Trisomy 21 (Down Syndrome.)  I recently read Dale's little book Angel Unaware.  I liked it so much I read it again a few days later.  The book is told from Robin's point of view in heaven and is very comforting.  I highly recommend it!

In 1950, the year Robin was born, it was not the norm in the United States for parents to keep their disabled babies.  Instead they were put in institutions or homes.  However the Rogers would not stand for this.  Roy said, "We are taking our baby home.  God has a purpose for allowing this, and if we put her away, we will never know it."  Dale cited Romans 8:28:  "All things work together for good to them that love God, to them who are the called according to his purpose."

So, they took their baby girl home from the hospital, loved her fiercely, and fought for her medically.  (Sound familiar?  Miss Lilly - have you met Robin yet?)   Robin had a heart problem that could not be fixed.  She was developmentally and mentally delayed and her health was up and down.  But through her short life, and the public example of Roy and Dale, life for Down Syndrome children in this country began to change for the better.
 When Dale worried and cried about Robin, Roy reminded her "God will take care of her; she's in his hands, and his hands are big enough to hold her. We will pray and trust him."

Robin remembered one lady telling her that she "should never think of [Robin] as an imperfect child but as a child perfect in [God's] eyes."  Look at the delight on Dale and Roy's face as they spend time with Robin - they certainly did not think Robin was "imperfect":

I have always said that Lilly brought me so much closer to God.  Robin did the same thing for Dale and Roy.  During Robin's life, Dale said that "she was coming to believe that the only important thing in this world was a person's relationship to God and his faith in Jesus Christ."  She was also "grateful to [God] for sending [Robin] in [her] handicapped condition, because she had made her walk closer to you." 

One day while caring for Robin, Dale prayed "God, is it your purpose to heal my baby?  If it is, I'll use that healing to your glory, and all the rest of my life I'll tell people about it, everywhere I go.  But if that isn't your will and what you want, then give me the strength to meet it, Lord.  Strength to face the future and to finish what Robin has started in all our hearts in this house, strength to get her message across the world.  Just strength, Lord, for whatever you have decided."

At the end of Robin's life on earth, she became very sick with the mumps and a fever.  Robin's fever raged to 108 degrees and Dale and Roy paced and prayed.  Roy reminded Dale, "God will call her when he's ready.  We've just got to trust him."  When Robin died, Dale prayed a prayer of thanksgiving to the Lord for letting them have Robin for two years.

Robin's life taught the Rogers "to see purpose in pain and messages on the crosses they have to carry around."  Roy even began to use a lot of spotlights to form a cross in the center of the arena during his rodeo shows.

Little Robin, lived only two years, and her life has touched millions.  Sixty-one years after her death, I feel like her story has impacted me.  I know it impacted Lilly even before I knew about it!  During Lilly's first hospitalization (when she had surgery for a pulmonary artery band to be placed on her heart), Dr. L, in reasoning through Lilly's case, said that Trisomy 18 children were treated like Trisomy 21 children used to be.  She wanted to see that changed.  I will always be so grateful to that doctor!

I doubt "millions" have heard about Lilly.  However, in her 17 months I do know that she touched thousands of lives of people all around the world.  How amazing is that?  God so often seems to choose the most unexpected people to carry out his work.

My sweet Lilly says "thank you God, Robin, Dale, and Roy!"

I have no doubt that Lilly is enjoying her wings, just as Robin couldn't wait to try hers out.

Friday, February 8, 2013

Trisomy Angels Memorial

I recently found the above online on a Trisomy Facebook site:

What is an Angel Mom?

An Angel Mom is a mother whose womb held life and the life in the womb ended either inside or outside the womb.  Some do not meet their babies, others meet their babies too soon, some are born and are too poorly to take home and others go home, but they do not stay.

An Angel Mom is a woman with incredible strength, who at times doesn't show how strong she really is.
An Angel Mom carries her baby in her heart, not in her arms, an Angel Mom's baby will never grow old.  An Angel Mom will always talk about her baby, celebrate birthdays, Christmas, Halloween and Easter, just the same as Earth children.
Just because she does this, doesn't mean she's weak - it simply means she'll never forget.

There is a new website to remember babies of any Trisomy called Trisomy Angel Memorial.  Here is the link: .  I uploaded Lilly's information to it this morning.  For the direct link for the Trisomy 18 page click here.  Lilly is listed there.  You can also go directly to her page by clicking here.  (I noticed her picture didn't show up at her link - it will be fixed - so if you don't see it - click on her name and it will show up.)  I think this website is a wonderful idea.  I hope a lot of people participate.

This afternoon, Tabby found a sign that spring is coming - yay!:

Tonight Solomon took a bath in his new bath chair.  It worked out great and he really enjoyed it!  It made bathing him easier for me too as he was getting so big and slippery.

Daffodils, sharing about Lilly, a happy baby in the tub ... I am so thankful for the little happy moments during the day.

"I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds.  I will be glad and rejoice in you; I will sing the praises of your name, O Most High." - Psalm 9:1-2

Tuesday, February 5, 2013

A thank you and a homeschool science tip

First off, thank you to the anonymous person that put the Lilly colored table runner in my husband's box at work.  What a fun surprise!  And to receive it on the 4th!  Thank you.  As you can see below, the perfect place was waiting.  On our table in our entrance way:

I've been homeschooling for 6 years now and it's funny having newbies ask me for advice. I wish I had all the answers! But I've been all over the place with schooling and am constantly learning and tweaking.  I'm sure all homeschool parents are.  Plus Tabby and Hunter are so very different when it comes to learning and interests.  One great thing about being their teacher is I get to learn so many things right alongside them.  And, we can go at whatever pace they need.  Anyway, I thought that maybe once a week or so, I would try to post a "homeschool tip."

When Hunter was able to sit up alone, at 6 months old, I used to put him in front of our frontloader washing machine.  He would sit there a long time watching it spin.  He has never lost his interest in washing machines.  He actually has a love of all things appliance and motors of any kind.  He has been very interested in electricity for over a year now.  (He's currently 4.)  His pediatrician urged me to feed his love of learning and was happy to hear I was doing so.

I'm not really a "science person" so I did what I always do when I have a question.  I buy a book.  (OK, I do google too.)  At a used curriculum sale, I found a book for younger kids that had some experiments in it.  They looked easy enough for me!  The ones where you hook up a battery to a lightbulb, etc.

So I bought lightbulbs and alligator clips and battery holders from Home Science Tools.  Hunter took right to it and within a day learned how to hook up parallel and serial circuits.  He quickly surpassed what I showed him with the battery and lightbulb.  He hooked multiple lights together, plus a little motor with a fan on it, and learned to control it all with a knifeswitch.

For his 4th birthday, he received the Science Wiz Electricity Kit from friends.  It is for ages 5-9.  Everything is broken down well in the booklet with simple colorful pictures.  We have had a lot of fun going through the book.  It seems after every assignment we do, Hunter goes back and adds to it.  It's fun to watch him work.

So if you have a child interested in science, check out the Home Science Tools website - they have a nice range of items that are affordable and interesting.

Here are some pictures of Hunter working with the Science Wiz Electricity book and kit:

Sunday, February 3, 2013

A wisp of hair

For some reason, it recently popped in my mind that I really regret not having a nice lock of Lilly's hair.  I do have a tiny bit, I cut shortly after she was born.  But I really really wish I had cut a lock the day I dressed her body for burial. 

That wish did give me the idea of including envelopes for a "wisp of hair" with the boxes I'm working on for our hospital donation to angel families. 

So today I made labels on my printer sticker paper (I LOVE sticker paper!), cut them to size, and put them on 17 envelopes:

Tabby made me the five pretty flower envelopes, out of scrapbook paper.  I thought that would be special to share handmade envelopes.

Friday, February 1, 2013

"Thank you God for this moment"

Though I have greatly enjoyed all my babies, I can say I have probably appreciate Solomon the most. That is because of Lilly and what she taught me about learning to treasure each moment. We really have no idea how long we each will be here.  Just because you and I don't have Trisomy 18 doesn't mean we're guaranteed to have a long healthy life!

I love holding Solomon and feeling his body get super relaxed and then hear his breathing and know that he is asleep in my arms.  Before I lay him down in his little bed for his nap, I pause and savor the feeling.  I silently pray "Thank you God for this moment."

I try and thank God for the many "moments" during my very busy days.  Here is another "thank you God" moment, as I raced by the living room today in the middle of a chore:

One angel mom shared recently that some people had told her that she shouldn't be holding her rainbow baby so much because it would spoil the baby.  I'm a pretty laid back person, but every time I think about what this woman shared I get quite irritated.  Why do people feel like it's their business to tell others things like that?  Especially someone who is in a situation they don't understand.  Unless you have lost a child, you just can not understand what it feels like to have a rainbow baby in your arms and all the emotions that go with it.  That mama, should be left alone to enjoy her baby and soak up all the healing that God is giving her through that baby!  OK ... rant over.  (And we won't tell those people that I am still sleeping all night holding Solomon!  I would need another blog post to tell you how beneficial that has turned out to be.)

"In every thing give thanks: for this is the will of God in Christ Jesus concerning you." - 1 Thessalonians 5:18