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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

Sunday, March 31, 2013

Happy Easter!

Remembering our Easter Lilly bunny:

I just had to try Lilly's hat on Solomon this morning:

The hat fit Lilly much better, but it was fun anyway!

One of the songs that Tabby has been working on for piano for awhile now is "Christ the Lord is Risen Today" by Charles Wesley.  (Charles Wesley is probably my favorite hymn writer.)  The hymn has been running through my mind most of the day.  Just didn't have time to record Tabby playing it to post here.  But I told her I need to record her playing something soon.  :)  Here are the lyrics:

1. Christ the Lord is risen today, Alleluia! 
 Earth and heaven in chorus say, Alleluia! 
 Raise your joys and triumphs high, Alleluia! 
 Sing, ye heavens, and earth reply, Alleluia! 

2. Love's redeeming work is done, Alleluia! 
 Fought the fight, the battle won, Alleluia! 
 Death in vain forbids him rise, Alleluia! 
 Christ has opened paradise, Alleluia! 

3. Lives again our glorious King, Alleluia! 
 Where, O death, is now thy sting? Alleluia! 
 Once he died our souls to save, Alleluia! 
 Where's thy victory, boasting grave? Alleluia! 

4. Soar we now where Christ has led, Alleluia! 
 Following our exalted Head, Alleluia! 
 Made like him, like him we rise, Alleluia! 
 Ours the cross, the grave, the skies, Alleluia! 

5. Hail the Lord of earth and heaven, Alleluia! 
 Praise to thee by both be given, Alleluia! 
 Thee we greet triumphant now, Alleluia! 
 Hail the Resurrection, thou, Alleluia! 

6. King of glory, soul of bliss, Alleluia! 
 Everlasting life is this, Alleluia! 
 Thee to know, thy power to prove, Alleluia! 
 Thus to sing, and thus to love, Alleluia! 

Thursday, March 28, 2013

Homeschool tip: Times Tales

If your kids are struggling with learning the multiplication tables, there's a great system out there to help in memorizing them.  Several years ago I bought a spiral bound book called "Times Tales" by Trigger Memory System.  It has a different picture on each page which represents a multiplication fact.  These pictures really stick with you. 

I was reminded of this the other day when Tabby was working through some math problems and in one she needed to know what 4 times 3 was.  She paused a minute and then said, "Oh yeah, 4 buttons and 3 mittens.  That's 12."

I see by the Times Tales website that there is a Times Tales dvd available now too.  If you want to see how everything works - and learn your 9s times table! - watch this YouTube video.  This company also has a number of other really interesting products (see here) including "Learning Games in  a Bag."  (I've always been curious about those but have never tried them.  If you have - I'd love to hear what you thought of them.)

Below are a few random pictures from our recent homeschool days.  I've mentioned that we love studying birds.   A week or so ago, Tabby noticed a female cardinal laying on our tiny deck.  We were afraid one of the dogs might get her.  So Tabby put on gloves, and then went out and picked her up.  She really enjoyed holding the bird, and then put her in the flower garden.  Not too much later, the bird was able to fly off.

Here Hunter is working in his math workbook (he's a "workbook type") and Solomon is busy learning by holding things and chewing on them.

(Hunter likes the Mathematical Reasoning workbooks from the Critical Thinking Company.  He's on book 2.)

Time for piano practice!

After reading some Bible stories which mentioned Jerusalem, Hunter decided he must build the walls of Jerusalem:

Finally, trying to make breakfast lately was getting tricky.  Solomon no longer wants to sit in the Bumbo seat and I just can't hold him while trying to get the food prepared.  If I sit him on the floor, I have to stop too often to put him back in siting position.  So, Hunter now slowly pushes him around the house in the stroller.  As long as he's moving, Solomon is happy!  And Hunter likes pushing strollers anyway because they have ... wheels! 

"You have put gladness in my heart . . . ." - Psalm 4:7a

Sunday, March 24, 2013

Lily bulbs and a new Trisomy Awareness billboard

Yipee!  We have two Easter lilies growing in our yard!  Before we moved last year, Tabby dug up all the lily bulbs from that house.  I replanted the Easter lily bulbs in the fall.  I think we had seven.  Two are now coming up. 

Yesterday I finally replanted all the bulbs from Lilly's memorial garden.  Plus I added in a few new lily bulbs.  I hope they begin to grow soon.  I also bought some lily-of-the-valley and Solmon's seal plants for the front of the house.  But time and weather have not permitted me to plant those yet.

I know gardening is therapy for a lot of people.  For me it's currently a race.  When Solomon falls asleep for a nap, I grab the baby monitor and run outside and see how much I can get done as fast as possible before he wakes up.  Whew!

Giuliana's mom has worked hard to get more billboards put up in their town up north to raise Trisomy awareness.  (She did a wonderful one about the time of Giuliana's second birthday.  You can see that one here.)  Here is the latest billboard that just went up:

Doesn't Giuliana look like a happy little girl?  (She has mosaic T--18)  You can read her blogpost about it here.  What a wonderful way to spread awareness as most people have not heard of Trisomy 18 or 13.

We are finally wrapping up our Lilly Memorial Project with our donations to angel families at the hospital.  Tabby made 17 special journals for me.  She covered boring composition books with pretty scrapbooking paper.

I had to order material to make two more bags and Lord willing, it will come in the next few days.  Right now I have 15 bags finished.  Hunter helped with the machine sewing part of most of them.  He loves any kind of machine.  So he enjoyed pushing the sewing machine's foot pedal for me:

Solomon was often sitting on the floor while we were sewing.  I put pillows behind him and give him a few toys.  In between sewing bags I usually had to jump up and sit him back up as he would have fallen to one side and be kicking his arms and legs like a little bug on its back.  It made everything take longer, but I guess he wanted to feel he was contributing.

"Oh give thanks to the Lord for He is good, His mercy endures forever." - Psalm 118:1

Thursday, March 21, 2013

Book: Super Nutrition for Babies

This past Saturday, I gave Solomon his first bite of solid food.  He had soft boiled egg yolk with a tiny bit of Himalayan salt on it.  He gobbled it down.  Actually it felt like he was attacking me and the spoon!  I've never had a child react that way so it rather threw me off.

He also learned to drink from a special water bottle that I had gotten Lilly.  I don't think he cared it was pink!

With Tabby I followed much of the book Super Baby Food and had great results.  I tried it with Hunter it did not go so well with him.  He remains a picky eater with some food textural issues.  Then with Lilly and her special needs everything regarding feeding a baby changed.  So much of her life was about giving her things to boost her immunity.  Once she got her g-tube, and I began her blenderized diet of real food, I used tSuper Baby Food for some for it's guidelines of what foods to introduce first.  But by then I had been reading books like Nourishing Traditions and starting to make more "real foods" for us.  So Lilly got things like homemade chicken broth, made from organic chicken bones and feet. (To see what all she was eating, via g-tube, click here.) I've continued to learn more and implement better/healthier food changes for us since Lilly passed away.

So for Solomon, things are different from the beginning.  Last week I gave him a taste of cod liver oil.  Unlike the rest of us, he hardly flinched!  (We take fermented cod liver oil by Green Pastures. I like the peppermint flavor the best - that way we don't taste fish oil all day.) 

Next Solomon will try chicken broth.  Then - and I can't believe this - grated raw liver.  (YUCK!!!!)  I'll add 1/2 teaspoon to his egg yolk. Then we'll move to more normal things like avocado and banana. 

So where am I getting these weird ideas?  A book called Super Nutrition for Babies by Katherine Erlich, M.D. and Kelly Genzlinger, CNC, CMTA.  I've read most of the book and it is excellent.  And really inline with the way I think about food these days.  (Weston Price anyone?)  So I'm going to follow the book with Solomon pretty closely and see how it goes.  (Even though I despise things like liver and sauerkraut ...)

I've given Solomon the egg several day in a row now.  I think he and I have worked out his aggressive eating style.  First - he has to have a bib on completely unlike the other kids:

Then I get two spoons.  I put egg on one, and he helps me put it in his mouth.  Then he continues to hold that one while I take the other spoon and scoop egg on it and hold it up.  He puts down the spoon that was in his mouth and helps me guide in the new spoonfull.  I pick up the spoon on the tray and start all over.  I tell you, I just wasn't expecting this.  Tabby and Hunter were both such neat eaters and perfectly content for me to spoonfeed them.  Solomon gets VERY upset if he doesn't get to help.  He is definitely a very unique little boy!

Tuesday, March 19, 2013

Trisomy 18 Awareness Day

Yesterday was March 18, so in this month of "Trisomy Awareness" that made it Trisomy 18 Awareness Day.  My day yesterday was so busy though I wasn't "aware" of it until this morning!  So I'm sorry Miss Lilly - my post is a day late.  (Though it's never really late - my little Trisomy 18 girl is in my heart every day.)

We were blessed to have Lilly with us for one March.  March of 2011.  Here are some pictures of her from that month - she was 8 months old:

I was looking back at my notes on Lilly's life.  Right before the one Trisomy 18 Awareness Day that she was alive, we had gotten the disappointing news that she had been rejected for heart surgery.  This was by the doctors at Wolfson Children's Hospital in Florida that had already operated and put in her pulmonary artery band.  I remember feeling just crushed because I had no idea who would do the needed surgery since we already knew no one locally would.  (Indeed, very few surgeons in the country will operate on Trisomy 18 children.)  However, that story had a happy ending because later that year, the doctors reconsidered and then performed the heart surgery Lilly needed to repair her two VSD's. (She had two holes in her heart that did not close on their own.  Very common with Trisomy 18 children.)  We remain so grateful to our local cardiologist, Dr. R, for pushing so hard for Lilly.

Trisomy 18 angel Julia's mom wrote an excellent blogpost yesterday on some important highlights of Trisomy 18 Awareness Day.  Read her post: .

A mom in the Trisomy Angel Parent's group asked us how we respond when someone asks how many children we have.  It seems that we all find ways to include our angel children in our responses.  And when we don't we end up feeling terribly guilty and/or disloyal to that child in heaven.  Sometimes answers change according to the situation.  (Ex. out in public, in a situation where you don't have time to explain, etc.)  My usual answer is "Four."  Often the person will then ask the children's ages.  For Lilly I say "my 17 month old daughter is in heaven."  Or, again according the situation, I like to say "Three with me and one in heaven."

My mother-in-law recently shared with me another answer that I think is good for certain situations.  (Her youngest passed away at 15.  Lilly is buried next to her.)  She said if someone asks her how many children she has, she may respond "three living children."  By saying "living children" you let the person know there was at least one other child.  Then if they want to pursue asking further, they can.

Psalm 121 - A Song of Ascents.
I will lift up my eyes to the hills—
From whence comes my help?
My help comes from the Lord,
Who made heaven and earth.
He will not allow your foot to be moved;
He who keeps you will not slumber.
Behold, He who keeps Israel
Shall neither slumber nor sleep.
The Lord is your keeper;
The Lord is your shade at your right hand.
The sun shall not strike you by day,
Nor the moon by night.
The Lord shall preserve you from all evil;
He shall preserve your soul.
The Lord shall preserve your going out and your coming in
From this time forth, and even forevermore.

Sunday, March 17, 2013

Happy St. Patrick's Day!

Remembering Lilly on this St. Patrick's Day:

I made the digital scrapbook page with My Memories Digital Scrapbooking Software.  The software is so easy to use.  Tabby loves it.  But I'm afraid I'll always be a "paper person."  (You should see my piles of papers everywhere as further proof!)  However, as many turn towards digital scrapbooking (much cheaper and doesn't take up space!) you can buy the software I mentioned at a discount through this blog.  Just click on the icon at the top right area.  :)
At the left is a new ornament I got for Lilly's memorial tree for this month.  (shamrock theme)  It says:

May angels gather round your door and bring you peace forevermore.

Made me think of our angel, wearing her smocked green dress.  :)

I always enjoy making Irish soda bread about this time of year.  I made it last night.  Here is a link to my favorite recipe for it: .  I make the "white soda bread."

I read the kids a good, short book on St. Patrick's Day today.  It is Saint Patrick's Day by Gail Gibbons.

If you'd like to read a fascinating factual account of Patrick, try David Bercot's Let Me Die in Ireland: The True Story of Patrick.  We read this as a family a number of years ago and I still often think of the story.  Patrick was kidnapped from Britain as a youth and sold into slavery in Ireland.  He became a Christian as he worked as a shepherd there.  He prayed for God to deliver him from slavery.  He prayed this for at least 100 (!!) times every day!  God did save him.  He went back to Britain.  But later came back to teach the Irish about God.  Legend has it he used the three parts of the shamrock to explain the Trinity.  (Three parts like God is three persons:  God the father, the son, the holy spirit.)

Seems appropriate to end today's post with an Irish blessing:

"May the road rise up to meet you, may the wind be ever at your back. 
May the sun shine warm upon your face and the rain fall softly on your fields. 
And until we meet again, May God hold you in the hollow of his hand."

Friday, March 15, 2013

Happy 6 months Solomon!

I can't believe Solomon is one half a year old already.  That means his big sister Lilly has been gone 15 months.  Here is Solomon and LillyBear:

Solomon's Lilly-colored hat and diaper cover were both crocheted by the mama of a little angel girl named Maisie.  (Maisie had Trisomy 18 like Lilly.)  This is the same talented woman that made LillyBear from Lilly's blankets.  (I need to post a clearer picture of the diaper cover - it is so cute!)

Solomon is our sweet rainbow baby.  I thought a romper with rainbow fish on it was appropriate for him:

"You have turned for me my mourning into dancing; You have put off my sackcloth and clothed me with gladness," - Psalm 30:11

Thursday, March 14, 2013

Lilly is featured on SOFT's website today

SOFT (Support Organization for Trisomy) is featuring different children each day on their homepage for Trisomy Awareness Month.  Lilly and Giuliana are today's children.  (I've mentioned Giuliana many times on this blog.  She has mosaic Trisomy 18 and is thankfully still alive.)  You can click to go to the homepage, and then scroll down just a little.

Here are the girls pictures that are posted:

What a beautiful surprise this was for my day!  :)

Wednesday, March 13, 2013

Putting Faces to Trisomy Awareness

A mama that has a little girl with Trisomy 13, and who has founded Eva's Gift Shop to help raise Trisomy awareness, has put several collages featuring Trisomy children.  Awhile back she asked that those of us who were willing to submit a photo of our child and a word describing then.  I sent her Lilly's photo and the word "firecracker".  To me "firecracker" isn't just a 4th of July word (Lilly was born that day) but also a word meaning that she was a spunky fighter. 

Here is the collage that Lilly is in (look under the "Y" in "Trisomy"):

The mama of an angel named Roisin recently did a balloon release in honor of her sweet girl, and other angels.  Here is Lilly's balloon and tag:

Isn't the tag just beautiful?

Here is a new website (at least new to me) called The Arms of an Angel.   (  Their mission is to provide emotional and financial support to families affected by Trisomy 18.  It was begun by a mama who had a stillborn baby girl that had Trisomy 18.  Her name was Aryiana.  You can read her story here

It is so wonderful seeing how many parents of children with Trisomys find ways to reach out to others.  They find healing in this and are able to bless others.  God certainly knows what He is doing when he gives these special children to the families that he does!

Monday, March 11, 2013

A pinwheel & an amazing museum

Yesterday we paid a short visit to Miss Lilly's grave.   I had bought her a little present I picked up the other day.  Just a simple Lilly colored pinwheel.  But it looked cheerful.  Sometimes when I'm out at a store, I enjoy buying a little something for one of our children.  Lilly is no exception.   

I was pleased to see that her gravestone looked very clean.  Maybe it's from all the rain we've had.  Her wreath is getting pretty old and tired, though.  I need to think of replacing it.  I've been pleased that it has lasted a whole year.

This past Saturday we took a field trip to the Brady C. Jefcoat Museum in Murfreesboro, N.C.  It was such a fascinating place to visit. Mr. Jefcoat (once a plumber, electrician, and contractor - now living in a retirement home) began collecting interesting things over 35 years ago.  Some things date back to the 1850s.  (Note that at this time, the museum is only opened on the weekend, and there is an admission charge.)  I don't think I've ever been in a museum where I have said "Oh wow!" so much.  :)

  I know I have NEVER seen such huge variety in one person's collections before.  Every time we walked into another room we were amazed!  Taxidermy animals, weapons, glassware, antique toys, furniture, farm tools, old appliances, phonographs, rubber stamps ... etc etc etc!  (There are over 13,000 items on display - it takes up 3 floors and more than 17,000 square feet in a historical high school.  And apparently there's even more that is not on display!)  

He has the largest collection of antique irons in the world - 992 of them.  (You'd think he would buy 8 more to round that collection up to 1,000):

Hunter loves dogs and washing machines.  So he was DELIGHTED to see a dog powered washing machine downstairs in the museum, among the world's largest collection of old washing machines.  His stuffed dog Woofie is in the picture:

 Another neat thing about the museum is that visitors are allowed to touch almost everything.  There are some things behind glass, and a few things roped off, but not much.  One thing that visitors may not touch is the below courtship couch from the set of "Gone With The Wind."  (It can be seen towards the beginning of the movie.)  The couch has been recovered since the movie.

I don't have any more time to work on this post, so I will end here, with a picture of a Lilly colored phone from the museum:

I had to wonder - did anyone have to dust all these things??!!