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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, January 31, 2013

Forget Me Not

I have never really considered myself much of a "flower garden person" though I certainly like the look of them.  And I have planted flowers at the last several houses I've lived in.  But last year, when we planted our Lilly memorial garden (a little garden with lily flowers) I felt for the first time that gardening really was quite therapeutic.  Something about pulling all those annoying weeds really wasn't so horrible after all.  It gave me time to think while keeping my hands busy.  And it gave me immediate gratification to see the areas I cleaned out.  And it gave me a place to put some little angel and cherub trinkets, as I'm a sucker for those.  :)

Here is the latest thing I put together for my Lilly Memorial Project that I'm still working on for donating to the hospital:  packs of Forget Me Not flower seeds.  Since it's not the time of year where there are a lot of packs of flowers in the store, I went on Ebay and found someone to buy the seeds from. 

The super tiny seeds! arrived in little clear baggies. So I made a label and printed out a bunch of copies on sticker paper, and put them on envelopes.  Tabby helped me put the seed packs inside.  I think they turned out pretty nice:


On a completely different note, if you're looking for some cute and yummy handmade Valentine's day candy, check out Tabby's blog, The Craftsy Kitty, where she has some chocolate painted roses and hersey kiss mice that she is selling: http://thecraftsykitty.blogspot.com/2013/01/valentines-day-goodies.html   Delicious!

Saturday, January 26, 2013

Homeschool tip: Our bird bulletin board

Solomon just greeted me from his nap with a hug grin.  I smiled back, cheered, and clapped my hands.  He had rolled over in his little bed for the first time!  If only I could have seen.  Yay for firsts!


(picture is the view out my kitchen window this morning - cardinals, juncos, a mourning dove - all eagerly eating)

After no snow at all last winter, yesterday mid-morning there was great excitement here in our Lilly-colored farmhouse when we saw some little white flakes starting to fall.  Sadly within the hour, it had turned to sleet.  But still, seeing some white stuff was great!  Frank and the kids had a great time sledding down the icy driveway.  Solomon and I watched from the window.  (I didn't want to take him out in the sleet.)

For the past few years, the kids and I have been learning to recognize different kinds of birds.  It has turned out to be really interesting.  Today my husband pointed out a blackbird with some color on it's wing and I was happy to see red-winged blackbirds in our yard.   Hunter said I needed to "add it to the chart."

He was talking about our bird bulletin board.  It is hanging in our dining room, next to the windows.  I covered a bulletin board with posterboard and velcro dots.  I have a box of pictures of birds that I labeled and laminated and put velcro dots on the back of.  When we see a different bird out the window, we put up the appropriate bird card on the board.  Usually, once a season, we take all the pictures down and start all over.  It has been great helping us learn birds common in our yard.  Here is our bird board currently:


(As you see it's nothing fancy - I really ought to "pretty it up.")  It's located next to our dining room window so we get to watch birds while we eat. Our favorite book for bird identification is Birds of the Carolinas Field Guide by Stan Tekiela.  There is also a CD that goes with it and we have been slowly learning to identify birds by sound.

The more we learn about birds, the more appreciation we have of how imaginative God was in creating such a variety of birds!  Here is our favorite Bible passage about birds - and it's extra special because it says "lilies" and "Solomon" in it (wink!)

"Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life? 'And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith?'"  - Matthew 6:26-30

By the way, Frank and I were amused at how ironic it was that I was writing about us trapping mice a few posts ago, then my last post was about Tabby bringing Martin and Katharina Luther - her new gerbils - into the house.  They are still rodents!  They are providing a lot of amusement though.

Hunter decided that he may get gerbils or hamsters when he's older.  If he does he wants to name them Genghis Khan and Kublai Khan.  I thought that was pretty funny! 

Thursday, January 24, 2013

Introducing Mr. and Mrs. Luther

I admit I am not a fan of men and boys wearing pink shirts.  But Solomon in a PINK Bumbo seat - now I like that!







Solomon said he doesn't mind the pink - it's fun to sit in big sister Lilly's Bumbo.  (Thanks to A.S. for loaning it to us in the first place!)  Lilly was never able to sit alone in the seat for more than a couple minutes.  But she often got practice in it during our therapy.





When I was a girl, I had pet gerbils.  One was named Rebel.  After he died I got another I named Whippersnapper.  My kids like hearing stories about them, especially the one when I took Rebel to the vet because he was dehydrated.  (Wow - I can't believe my parents spent that money.)  Anyway, Tabby decided that having gerbils sounded like so much fun that she saved her money and bought two yesterday.

Named after Tabby's long time favorite couple in history, here is Martin and Katharina Luther:




And here they are separately.  Martin Luther (looking for where to nail his 95 Theses?):




And Katharina:




I asked Tabby what the real Martin and Katharina would think, having gerbils named after them.  She shrugged and said they would be flattered.

And maybe.  From what I've read about Martin Luther he had a big sense of humor.  Though, he may prefer to have a dog named after him:

"The dog is the most faithful of animals and would be much esteemed were it not so common.  Our Lord God has made His greatest gifts the commonest." - Martin Luther

Sunday, January 20, 2013

Of Mice and Me

I don't remember if I've actually ever read John Steinbeck's Of Mice and Men but that title popped in my head yesterday as I encountered more mice goodies.  I've had several people ask if we've seen any more mice since my recent post about one that we trapped.  The answer is "yes" - we caught two more in traps in the attic.  Frank was home when I found them, so he got the fun job of disposing of the bodies.  We haven't caught any since though, so we think we may have wiped out that family.  Yesterday I was sorting through some bags of clothes that I brought down from the attic.  In one I found a big stash of sunflower seeds from the bird feeder.  In the other there was several handfuls of pecans.  Hopefully those were stored up supplies from the dead mice.  But ... we'll keep our traps set to welcome any more invaders!

The big sisters of Trisomy 18 angel Hannah Kwant are some very talented seamstresses.  Cassie has a blog and an Etsy shop where she sells things she makes in honor of Hannah.  She has started a line of "Beary Sweet Outfits".  These clothes fit bears like our LillyBear.  (Bears in memory of an angel child.)  Of course they'll fit "regular" bears too.  Here is LillyBear modeling one of Cassie's creations:




Tabby wanted me to share an outfit that Cassie's sister Heidi made for Tabby's doll named Jade.  (It's by the American Girls company)  Heidi sells doll clothes on the Etsy site






With our recent move and the birth of Solomon 4 months ago, my life has felt pretty crazy.  My hospital donation project still has not yet happened.  I had planned to donate everything in December.  But life has kept me too busy.  Still, I am working hard to try and wrap up my last projects.  Most of it is done.  Today I finished the 17 memory boxes.  I have them for girls, boys, and the green ones are for either:






Today as I was sorting through some pictures, I found this one, which I framed.  I love how Lilly used to look at me.  She did enjoy looking at her family, and when she was older she would smile!  (She is 4 days old in this photo):





"The way to love anything is to realize that it may be lost." -G.K. Chesterton




Friday, January 18, 2013

World Traveler Lilly

Lilly seems like a little world traveler to me in some ways.  Besides having the honor of being on the Every Life Counts website in Ireland, her presence is also in Israel, Hawaii, and Canada.

A mom from Israel contacted me last year after her little girl Renee passed away.  Renee had Trisomy 18.  This dear mom had already had a baby boy, Noach, pass away.  Noach had Trisomy 13.  She shared that right after Renee became an angel, she received a number of trees to plant in their yard, including three cherry trees.  She decided the cherry trees would be in honor of her two Trisomy babies, Renee and Noach.  She then planted the third tree in honor of Lilly!  I thought that was so sweet.  She said she planted crocuses and lilies under the trees.

On Lilly's 1 year angelversary last month, she sent me pictures of the cherry trees.  She said they had grown quite a bit and were doing well.





Here is a picture of all three trees.  Noach's is on the left, Renee's in the middle, and Lilly's on the right:


Amazingly, this is not Lilly's only tree in Israel.  After she died, her photographer from Now I Lay Me Down To Sleep had one planted there in her name.

Also about the time of Lilly's 1st angelversary, I received the following pictures from another Trisomy mom, which she took in Hawaii:



This mom shared that while her family was in Hawaii, she wrote Lilly's, and some other angel babies names, with white rocks. She said they have a tradition in Hawaii of using white rocks to write on the black lava rocks with.

I've posted the next pictures before, but they just go so well with this post. 

Another Trisomy mom in Canada sent me this photo that she took, in honor of Lilly, last year on what would have been Lilly's 2nd birthday:




Finally, I requested Carly Dudley take this picture in Australia:


I love how supportive and thoughtful our Trisomy community is.  I have been blessed to travel out of the country before, in the 1990s.  I have been to England, Scotland, Switzerland, France, and Italy.  If I ever get to go again, it would be neat to do something like this in memory of other angel babies and share them with their families.

Of course I don't have to leave the country to do something thoughtful.  I'm actually excited about a little Valentine's Day project I have in mind for some families.  But I can't share that here quite yet.  ;)

Tuesday, January 15, 2013

4 and 13

Today my happy little Solomon turned 4 months old.



Today also means my sweet Lilly has been in the arms of Jesus for 13 months.


In the above picture Lilly is in the same swing that Solomon is in, in the last picture of him above.  All four of my children have used this swing.  I took this photo of Lilly just a week or two before she died.  She was playing with the angel ornament I had bought her for the Christmas tree.

Each week, Tabitha writes a short report on a different hymn as one of her homeschool subjects.  This week she choose "Safe in the Arms of Jesus."  This was a hymn I didn't recall ever hearing of until after Lilly passed away.  (See my post about it, which includes the lyrics, here.)  I just read the story and learned that the author of the hymn, Fanny J. Crosby, and her husband had had a baby who did not live long.  She would not talk about this tragedy.  She would not even tell people if it was a boy or girl baby.  Her only allusion to it was in her oral biography: "God gave us a tender babe and soon the angels came down and took our infant up to God and His throne."

What a great example of how people all handle mourning differently.  I thoroughly enjoy talking about Lilly to anyone who will listen.  Mrs. Crosby apparently couldn't bear to say a word about her angel baby.

Ten years after Mr. and Mrs. Crosby's baby died, she was given a tune by musician Howard Doane and asked to compose a poem to match it.  After hearing the tune she exclaimed it said "Safe in the arms of Jesus" to her.  And 30 minutes later she dictated the poem she had just composed in her mind to Doane.  She said she wrote the song for the bereaved, especially mothers who had lost their children.  Now I know that she understood the loss personally.

Apparently, when offering sympathy to a mother that had lost her child, she would say "Remember, my dear, your darling cherub is safe in the arms of Jesus."

What a blessed thought.

(I got the information on Mrs. Crosby from the book Then Sings My Soul by Robert J. Morgan)

Today I added a touch of Lilly to my curtains in our living room.  I washed the curtains that the previous owners had left, but wanted different ties for them.  (The previous owners had used dark colored flower print scarves as tie backs.  They were fine but "just not me.")  So I pulled out some Lilly colored ribbon from my stash, and a red and white polk-a-dotted ribbon that had come on a beautiful quilt that someone gave to Solomon and tied them on the curtains. (You can see the quilt on the back of the recliner.)  The ribbons looked just right.  :)


Monday, January 14, 2013

Sleeping with one eye open

One of those quirky common Trisomy 18 traits is to sleep with eyes open.  I'm not sure if some of the children have their eyes wide open, or if they are more cracked, with varying degrees, like Lilly used to do:



I was interested to learn the other day about a girl that is 12 years old, with full Trisomy 18!!!, who just had surgery to repair her corneas.  If I understood correctly, they had become damaged from being dried out so long while the girl slept with her eyes cracked open.  Her mom said the surgery was quick and easy.

Unless you have been in hiding, you know that the flu and RSV are rampant this year.  (Apparently because last winter was too mild to kill off as many germs as usual.)  Yesterday my friend H. told me that her baby had just gotten over pertussis (whopping cough) and that their doctor said that there have been more cases of pertussis this winter than since 1955.  Hmmmmm.  Makes you wonder about the vaccines.  Do be careful to keep your hands washed!  And please remind your children not to touch babies or other kids in the face.  :)

Yesterday at church, we were delighted to receive the following drawing from a 6 year old boy.  A rainbow to remind us of the gift of our rainbow baby!



"What is desirable in a person is kindness, . . ." - Proverbs 19:22

I hung it up next to Hunter's page of writing "Lilly":



The "No Time for Flash Cards" website (which has a lot of really good craft, learning, and motor skill development ideas for little ones) had a rainbow Valentine craft on today's post.  Perfect for siblings of rainbow babies.  :)  Of course I'm sure many children would enjoy it.  I'm going to get the supplies and let Hunter try it.

Saturday, January 12, 2013

Whistlin' Dixie

I was looking at pictures on my cell phone while riding in the car this afternoon.  I loved finding the very first picture of Lilly I took on my cell phone:



Such a beautiful, tiny little thing!  I don't think I'll ever be able to get rid of my cell phone.  I miss you angel girl!  I know you look so beautiful in heaven!

For a variety of reasons, we decided to get another dog.  We already have one, Lucia, who is a Labrador-terrier mix. She is a big, sweet rather frumpy looking dog.  Hunter wanted a German Shepherd, and Tabby wanted a Collie.  Amazingly, we found an ad on CraigsList for a free dog named Dixie that was a German Shepherd - Collie mix!

We brought her home this afternoon.  Lucia was thrilled.  At first.  Dixie seems interested but I think it might be a few days before she adjusts.  Dixie is on the left, Lucia on the right:

Quick - do you remember what day God created dogs?

"Then God said, 'Let the earth bring forth the living creature according to its kind: cattle and creeping thing and beast of the earth, each according to it's kind'; and it was so. . . .Then God saw everything He had made, and indeed it was very good.  So the evening and the morning were the sixth day." - Genesis 1:24, 31

One of the first words Hunter learned to read was "God." He was delighted "dog" is God backwards.

Friday, January 11, 2013

Non invasive blood test and - eek! a mouse

I have been meaning to note this for awhile, for anyone that this might help.  There is a new blood test that detects Trisomy 18, 13, and 21.  (Trisomy 21 is Down Syndrome)  This is good news because it can be done in place of an amniocentesis.  (Having an amnio can be risky for the baby.)

It was hard for me to finally agree to an amnio to see if Lilly really did have Trisomy 18, as I was worried about the risks.  (see my posts here and here about it.)  But we did need to know, as many decisions surrounding Lilly's birth depended on that information.

This morning it is dark and gloomy out, and raining.  But I am enjoying the sound the rain makes on the metal roof of our old farmhouse.  Living out in the country is wonderful and peaceful.  Even if we do have uninvited guests.  Little tiny furry uninvited guests with long tails.  Who love pecans.  Look what I found when I took some towels out of this kitchen drawer:






The cabinet next to the drawer had a chewed up pecan bag with very few pecans left in it.  That was a busy mouse!  Or mice ...

So we set some traps.  I will spare you a picture of the mouse that was in one 2 days later.  (I don't want to get a bunch of hate emails from the save-the-mice types.)  But let me say it was the biggest mouse I had ever seen!  I took it outside and let the body fall out of the trap into the woods.  Ick!

Now for a little Bible humor.  Not long ago, I read Hunter the story from Numbers 22:21-39 about Balaam and his donkey.  This is the story where Balaam is riding his donkey and the donkey sees the angel of the Lord in the road and turns to avoid it.  Balaam doesn't see it and gets mad and beats his donkey to get him back on the road.  Finally God allows the donkey to speak to Balaam and the donkey asks Balaam why he was beating him.  Balaam answers the donkey and then he finally sees the angel.  As most kids are, Hunter was fascinated by the whole story.

A few days later, Hunter was helping Frank bring in firewood.  Afterwards, as Frank brushed off Hunter's jacket, Hunter suddenly started yelling "Why are you hitting me?"  He kept saying it and Frank kept saying "I'm not hitting you!"  Hunter finally explained he was making a joke about Balaam's donkey.

:-)

Tuesday, January 8, 2013

Chunkin' up and slimmin' down






Solomon has become one smiling and chunky baby.  He is a little over 3.5 months old and now tops the scale at 14 pounds.  I can not tell you how absolutely amazing it has been to my family and I to watch a "normal" baby grow.  It seems it is right before my eyes!  Of course we had seen "normal baby growth" before, with the two children older than Lilly.  But Lilly was the last baby before Solomon and it's hard not to gauge him by what we remember of her. 

Lilly lived 17 months and was only 13 pounds when she died.  Solomon isn't quite 4 months and is already 14 pounds.  It's just hard to get my mind around it some days.  Babies, like Lilly, with Trisomy 18 really do have a hard time "thriving" (as the medical community puts it).  After I weighed Solomon on Lilly's scale, Hunter hopped on it and wanted to know what he weighed.  He's just under the 50th percentile and weighs about 35 pounds.  That made me think of a little girl with Trisomy 18 I know of that is 7 years old and weighs less than my 4 year old.

Whenever I get pregnant, it is normal for my body to gain a LOT of weight.  I really do not eat a whole lot more and remain quite active, but the pounds just pile on.  The midwives would tease me and say "where are you putting all that weight?"  I lost all that weight after my first two babies.  After Lilly was born I hardly lost any weight at first.  And when she died I still was 15 pounds away from pre-pregnancy weight.  Thinking back I believe that had much to do with the fact that I was pumping instead of nursing normally, and due to extreme stress.  ("Is my baby going to die today?") 

This time, much to my delight, I have been rapidly losing weight.  In fact, in a bit less than 4 months I have lost 50 pounds.  I only have 15-20 pounds to go.  (Yes I told you I gain a lot when I'm pregnant!)  Besides nursing normally, which causes a woman to lose weight, I have been following a way of eating that is a bit different for me.  Since I started it, about 2 months ago or so, I have been losing about 5 pounds a week.

My "new way of eating" focuses on foods that produce lower insulin responses and combining food in a bit different way.  I had learned in the past about eating foods with lower gylcemic rates, from Dr. Al Sears book High Speed Fat Loss in 7 Easy Steps.  But I got that book during Lilly's life and well, I didn't get far with many personal things while she was alive, because I was so focused on taking care of her.

Shortly after Solomon was born I bought a new book called Trim Healthy Mama by Serene Allison & Pearl Barrett.  This was the perfect book for me and I bet it is perfect for most of you reading this.  You don't have to be a mama!  Eating this way is helping my husband to effortly lose weight too.  I'm learning to combine our foods into two categories:  "satisfying" and "energizing." 

My goodness - there is way too much to share about this book and I'm about out of time.  Don't let the price of the book scare you ($35) - it is worth it.  It is over 600 pages, has a bunch of really interesting chapters - even one on what the Bible says about food - and is full of yummy, simple recipes.  In fact, it's one of the few books that we've liked everything we've tried so far.  The topics are not just about food, though there is a ton of discussion about that.  They also cover hormones (for men and women), exercise, skin care, etc.   I have learned so much and I really am not a stranger to healthy eating/living.  The authors have a Facebook page and have promptly answered all my questions.  (Tabby was amazed about this - that the famous authors on the cover of the book answered me!)

You can read a summary of the book and see the table of contents here.

My current favorite snack is called "skinny chocolate."  I follow the book recipe using coconut oil, dark cocoa, and stevia.  I add in some unsweetened coconut and walnut pieces.  Freeze it, break off pieces, and eat.  A yummy and healthy way to get skinny!  :)

Sunday, January 6, 2013

Unwanted shoes


I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

            Author - Unknown

I thought of this poem last night when we attended the viewing of a young man that was killed by a drunk driver.  I thought of his parents.  I thought of my husband and I.  I thought of the many other parents I now know who have lived through the death of a child.  The viewing was at the same funeral home as the one we had Lilly's viewing at.  The coffin in the front was so much bigger than hers.  Full size instead of infant size.  The room was full of people like Lilly's.  The pain there, masked behind smiles.  Laughter mixed with tears.

Hunter asked me the other day if he would die before me.  I told him that usually parents die first.  To me that's the way it should be.  Maybe it's cowardly of me to think that way.

For some reason, when I read the above poem, I don't think of ugly shoes.  I think of Lilly's adorable shoes and am so very thankful for the 529 days I got to know her.  And to put cute little shoes on her feet. 




I bet she's wearing beautiful shoes in heaven!

Friday, January 4, 2013

A Lilly memorial video by her big sister

Tabby created this video of Lilly on Shutterfly.  The music really adds a sweet touch.

video

Today is January 4th.  When Lilly was alive, we celebrated every month she lived on the 4th of each month.  We continued to do so after she passed away.  My husband wears his Lilly colored tie to work.  At home the kids and I decorate Lilly's memorial tree.  This month marks one year since we've been decorating her tree, each month with a different theme.  January is angel month so I brought down the box of angel ornaments from last year.  We have some new additions this year - ornaments we received since last January.  I am anxious to put them all up tonight.  For some reason I am finding it very comforting to be done with the first year after Lilly and to once again get these ornaments out.  It's hard to explain but it's nice to feel comfort in surprising places.

"For it is written: 'He will command his angels concerning you to guard you carefully;" - Luke 4:10

Tuesday, January 1, 2013

A fresh year

Hello and Happy New Year from Solomon!

I always love the beginning of a new year.  A fresh year with goals and hopes and wondering - as Hunter often says when we're reading a story - "What will happen next??!"

I always loved the Anne of Green Gables book series.  One quote from Anne I particularly like is:  "Tomorrow is always fresh, with no mistakes in it."  I feel like that many nights when I am thinking about my day.  And I always think about that at the start of a new year.

I am looking forward to a lot of things this year.  Like many people - I am looking forward to loosing weight!  I've gained 2 lbs. over the holidays, which means I need to lose 22 lbs. to get down to my normal weight.  I always gain a lot of weight when I am pregnant - even though I really don't eat a lot more.  I have been amazed at how fast I am losing weight after Solomon's birth.  I lost a lot fast, and then for the past month have been losing about 5 lbs. a week.  That is until last week.  I have been following a great eating style I learned about from a book called Trim, Healthy Mama.  I will blog about it soon because the book is incredibly helpful.

I'm also trying to heal my diastasis recti muscle that was really stretched and messed up from my last three babies.  I'm following the "Tupler Technique" for exercises and have seen much improvement.  I also plan to blog in more detail about it, in hopes it will help others with "mommy tummies."  (Actually men can damage this muscle too.)

I am almost finished with my book LillyBear Goes to Chincoteague.  My progress came to a halt in September when Solomon was born, and then we moved 3 weeks later.  Then I had much unpacking to do, struggled with post partum depression some, and well - life has been busy!  But my goal is to finish my draft this month.

I have plans to make this blog easier to find information on for people that are new to it.  I am going to add several pages.  A summary of Lilly's life, a page of Trisomy 18 resources, and a page of a list of memorial ideas.  I'd like to also go back and "label" earlier posts so people can find information easier.

I have so many ideas for blog posts - on a variety of topics - from homeschooling ideas to doing laundry with soap nuts.  I sometimes feel I will burst if I don't write, so I thought I should share things that may be useful to others.  And of course I'll continue to share memorial ideas and about our latest "In Memory of Lilly" projects.

I am praying for anyone reading this, that the Lord will bless you and guide you in the new year!