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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, May 31, 2013

Two girls verses a rat snake

This is Lilly's garden as of today - the lily flowers are popping open like crazy!  (These are "sugar love carpet lilies"):

 On Monday our chicks moved into their new home:  a converted garden shed.  I was a bit sad about losing the pretty garden shed over to a bunch of chickens.  But we needed a place for the chickens to move to quickly, and Frank works 10 hour days so he didn't have time to build a completely new structure.  So with some work inside the shed and out (and more to come) - it is a good coop.

On Wednesday morning we decided to let the chickens out into a little fenced area.  The first chick came out, walked down the ramp, and promptly found a little area that wasn't closed up tight enough and escaped under the coop.  Phooey.  I set Solomon down in the grass (he was SUPPOSED to be napping but we'd had several interruptions ...) and I quickly blocked that little gap until Frank could fix it. Solomon began fussing - he had a huge mouthful of dirt and grass.  I picked him up, cleaned out his mouth, and then walked quickly around the coop.  I had to stop abruptly because right in front of my feet there was Mr. Rat Snake moving quickly towards the chicken under the coop!  (You know that feeling where it's hard to sleep unless you at least have a sheet over you to "feel safer"?  I felt that as I stood there in my flipflops wishing I had my tall rubber boots on.)

I yelled to Tabby and she let out a LOUD scream.  But it was not in terror.  Oh no!  She had turned into a mama tiger and wanted her chicken safe.  "Kill it!" she yelled.  I stood there with Solomon in one hand not sure what to do.  So she sprinted to the nearby woodshed to grab a hoe.  (While I yelled at her "Watch out for copperheads!" because the former owners told us he sometimes had seen them in there and to be sure we had a shotgun handy for those times.)  She was back in an instant and began chopping at that rat snake in a fury. But he didn't die!  While she held him pinned she screamed "Help me!"  I ran for another hoe (of course looking for copperheads!) and came back.  I was still holding Solomon in one arm and no way was I going to put him down in the grass.  So I began chopping at the snake, holding the hoe with one hand, but it was hard. 

Wack!  Wack! Wack!  I had assumed a hoe would cut through a snake like a knife through butter.  Maybe it would have if I had had two hands free to swing it?  And if that snake would have stopped squirming and held still!  Or maybe our hoes are in dire need of some sharpening!  Well Mr. Rat Snake (was it the same that ate our baby bluebirds?) got free and went right under the coop.  

Tabby really began to panic then.  "He will not kill my chicken!"  She ran to one side and began calling the chicken "Here chick-chick-chick-chick!"  I yelled at her not to put her face so close to the opening in case that snake struck at her.  I didn't care rat snakes aren't poisonous - I don't want anyone bit.  I ran to get her some food to try to use to coax that chicken out while Tabby fumed in anger and prayed for God to save her chicken.

God did protect that chicken though it took an hour to get him to come out!  Whew!  I cornered him and Tabby grabbed him and put him in the coop and slammed the door shut.

Snakes.  I hate them.  (Or as we tell our kids to say "I don't care for ...")  I imagine they've been unpopular ever since Satan's temptation of Eve in Garden of Eden.  

We had been debating about what to do about the snakes.  We know that rat snakes eat mice aggressively so that could keep the copperhead food down.  (Copperheads are not aggressive about getting the mice.)  And less food for copperheads might mean they stay away.  So we thought maybe we'd let the rat snakes be.  Maybe just use the "snake flicker" (see previous post) when necessary.  (But I could never use that while holding Solomon in one arm - that thing is heavy!  But now we're thinking that ANY snake that dares to come near us or our chickens - then we'll do our best to kill it.

What about you?  Do you have snakes in your yard?  What is your policy?  And what is your favorite way to kill them, if that is what you do?

"So the Lord God said to the serpent, “Because you have done this [deceived Eve],“Cursed are you above all livestock and all wild animals!  You will crawl on your belly and you will eat dust all the days of your life." - Genesis 3:14

Wednesday, May 29, 2013

A Memorial Day "hello" from Lilly

This past Memorial Day I smiled to see that some of the lily flowers in Lilly's memorial garden were starting to open!

Today I can see out the window that a bunch more lilies have opened up.  I'll take a picture to post here soon.  I can not recommend a "memorial garden" highly enough.  I feel like every time a flower opens up, it's Lilly sending me a "hello."  :)  I don't know much about flowers and am not really "into" gardening much, but I really do enjoy having a space where beautiful things grow, in honor of Lilly.  Each spring I will add in some more lily bulbs.

The chicks greatly enjoyed their time outside Monday.  They seemed to especially like being in this area.  Can you spot the chicks?

They liked getting into the middle of the flowers and sitting in there.

I've gotten a number of comments and emails about the "snake flicker" mentioned in my last post.  So I wanted to share pictures of it.  We still have it right outside the kitchen chimney where Mr. A left it:

Did you notice I said "kitchen chimney"?  Our farmhouse is over 100 years old so there was once a big cookstove in our kitchen.  (You can not see the chimney from the inside anymore.)  Earlier this month, we were blessed to have a visit from the woman who's grandmother lived in this house.  Mrs. M and her husband accepted our invitation to come over and share with us about the house.  We learned where that big cookstove used to be!  Mrs. M had several pictures to share of our house, and of her grandmother and grandmother's first husband who built the house.  I LOVE history so this was really interesting/fun for me. 

Speaking of houses, sadly some friends of ours - the L family - watched their house burn down on Memorial day.  It was a devastating loss.  Though, praise God, no one was hurt.  They were able to save very little.  I feel so terrible for them.  They have a son that is special needs and eats via his g-tube.  Yesterday I made him some blenderized foods and thankfully already had chicken broth and some pureed foods of Solomon's on hand.  When the kids and I took the food to the L family, I joked we were "Meals on Wheels" for g-tube eaters.  I've already made a list of all the things I'm going to make for this little boy to take to him Friday.  I guess you could say it's another Lilly blessing - that through her I learned how to make food for feeding her through her g-tube and now I know exactly what to do to help feed this little boy.  (I highly recommend feeding children real food, rather than just formula, through g-tubes.  I have a number of posts about this topic, here is one.)  I am so happy to be doing this.  It's rather bittersweet.

Thinking about the L's family loss of their home has weighed heavily on my mind.  But I know that God can bring about beauty from (literal) ashes.  And the L family, who are very strong spiritually, are already talking about the positives that will come out of this.

"He has made everything beautiful in its time." - Ecclesiastes 3:11

Sunday, May 26, 2013

Solomon's Lilly-colored outfit

The stores are flooded now, all in preparation of July 4th already.  It hurts my heart to see all the little red-white-and-blue dresses.  Tabby and I keep pointing them out to each other saying how cute Lilly would have looked in them.  I finally made myself feel a little better the other day, by getting Solomon a Lilly-colored outfit special for his angel sister's 4th of July birthday:

Recently I read on Julia's blog (written by the mama of a Trisomy 18 angel, the little girl that passed away the day after Lilly) that she had just finished a photography class for mothers that had lost a child.  (Read her post here.)  Healing through photography - I find that a fantastic idea.  It is called Illuminate.  Here is the website:   This is something I'd be very interested in doing at some point.

Solomon has joined the ranks of babies/toddlers everywhere that love getting into cabinets.  I didn't mind as I was able to get a few kitchen chores done:


The chicks continue to grow rapidly.  Tabby has taken over most of their care and they all love her and flock to her:

Her most aggressive fan is the chick she's named Friendly:

The mama of Hannah, an angel baby girl (Trisomy 18) shared the below drawing with me recently.  Her youngest daughter drew this picture of her family and she included her sister Hannah along with Lilly and Jesus in heaven.  I thought it was so sweet.  Look at the big smiles on Lilly and Hannah's faces! 

I'm so looking forward to seeing my smiling Lilly girl in heaven one day, and meeting her special friend Hannah! 

Friday, May 24, 2013

Homeschool tips: Nature Guides and Reading with Easter eggs

For the past week or so, the kids and I have been enjoying watching two very busy bluebird parents feeding their babies (bird photo by Tabby) :

Then yesterday during Literature, Hunter interrupted and said "Why is the bluebird box open?"  Uh-oh!  We all jumped up and ran out the door to look inside.  "Snake!" Tabby said in disgust.  Then we all felt sad thinking of the baby bluebirds that were now being digested in that ugly snake.  We watched for awhile but the snake wouldn't move.  It just stayed curled in the box most of the day. Even when Tabby threw rocks at it.

Yuck, huh?  I got out our new snake identification guide book and we determined that it was a rat snake.  (Commonly called a black snake.)

In the evening Mr. Rat Snake slithered up the pole the bluebird box was on (notice the fat belly full of birds):

But then he turned around and went back in the box.  Then started to leave again.  Then went back.  Not sure what he was thinking!  I joked he kept remembering things he forgot.  "Oh my! I forgot my keys!"  This morning he was still there.  But finally disappeared this afternoon.

The kids urged me to contact the former owners of our old farmhouse, to ask if snakes ever got their bluebirds.  (They were big nature watchers and said over 200 bluebirds were hatched in their time at this house!)  Mr. A e-mailed me back and told me they had only lost about 10% of the birds.  He explained how he did it (which really cracked me up picturing this in my mind):

"If you hav'nt moved it, there is a long (8-10 ft.) cedar pole at the back of the house with a "V" notch on the skinny end. That was refered to as Pat's snake flicker. When I saw the black snake coming toward the back area, I would take out my stick to him. Holding the stick by the fat end with both hands -one at the end and the other about 18" up-I would walk up to him and slowly place the "V" notch at his middle. He will stay still because he does'nt know what is going on. Have one point of the "V" on the ground and the other above the snakes belly. Then, aiming at the fence, jerk the stick forward with all your force. He will fly up in the air, and when you get good at it, will fly about 15ft into the air and go over the fence, landing on the grass with a loud thump. Then you go outside the fence with your stick and place the "V" as close to his middle as you can. This time he won't stay so still!! Flick him in the air again and he will be halfway down the back lawn. The third time you approach him he will say "I've had as much of this as I can stand" - and he will scoot off into the woods as fast as he can wiggle. He remembers that lesson. he won't be back for a WHILE. When the snakes get too big - some were 6ft. then I must admit I used the shotgun. But that was the last resort, as most of the time they are good for you."

We do still have the "snake flicker" pole, just where Mr. A left it, and I admit there is a part of me curious about trying it.  If I'm wearing high boots.  And if it's not a copperhead. 

One thing we really enjoy and use a lot are our collection of nature guides.  Our favorites are all focused on our state, North Carolina.  All the pictures are in color and the information very helpful.  It makes things so much quicker and easier to only be looking at the area you live in.  We have:

- Birds of the Carolinas - both the book and companion bird call cd (mine and Hunter's favorite)
- Wildflowers of the Carolinas (Tabby's favorite - she writes a wildflower report each week for school)
- Butterflies of the Carolinas
- Trees of the Carolinas
- A Guide to the Snakes of North Carolina (our newest which we keep pouring over in disgusted fascination)

Finally, one last little tip I wanted to share was in using a plastic Easter egg to teach a child how to read a few rhyming words.  (I got this idea online somewhere.)  I took a plastic egg, wrote "at" on one side.  Then on the other side wrote these letters:  f, m, p, s, r, c

All Hunter had to do was turn one side, and line up each letter in turn with "at."  And within minutes he was reading 6 new words.  (He already knows the sound each letter makes, but this seemed to really help him understand better about putting a word together.)

Sunday, May 19, 2013

A peep! and spider bite update

Several people have asked how the chicks were and also how Frank's spider bite is.  The quick answer is the chicks are bigger and the spider bite is getting better!

As best the doctors could tell, Frank was bitten by a brown recluse spider.  The bite was painless - he was not aware of it until later.  He did not even show me until the next day when the bite looked like a growing blood blister.  But then it started oozing and the flesh was dying.  I've been looking at symptoms online and am so very thankful his mama insisted he go to the emergency room.  All the sites I looked at warned that if the person that was bit felt extremely weak and tired, to call 911!  (He could barely keep his eyes open.)  I also learned that the brown recluse has venom that is more powerful than a rattlesnake, though not as bad since the person getting bitten receives a smaller dose.  Still, the spider's venom is enough that a child under 7 can die from its bite.  Yikes!  Well we know what to look for in the future.

The chicks are really growing fast!  And as they grow, we're starting see their personalities emerge which is fun. 

We currently have them in an area on an enclosed porch:

One chick in particular is able to get out at times.  I named him "Houdini."  (And ended up having to read Hunter a book about the magician Houdini who could escape being locked in all kinds of things.)  Tabby named another "Friendly" because it tends to be the only one to run up to her when she comes to check them or take care of their food and water.  Two chicks have been growing at a much slower rate than all the others.  Hunter calls them the "Trisomy 18 chicks."

Here's our daredevil chick -climbed to the top of the ladder to read the "not a step" sign:

Tabby loves taking pictures of birds out the window of the room she sits in to do her schoolwork.  We get so many different birds visiting at the same times.  Here are a male and female house finch:

American goldfinch:

 Eastern bluebird feeding it's babies:

 Well that's enough of our "feathered friends" for today!  Happy Pentecost!  (See Acts 2)

Friday, May 17, 2013

A life, no matter how short, can have an enormous impact

Remembering our sweet angel Lilly:

I came across this beautiful - and oh so true - quote on the Trisomy Angel Parents support group:

 “The amount of time on earth matters very little: a man can live in greed and pride 90 years and never find God, know Him or accomplish His Plan. A stillborn baby on the other hand, teaches people to love, brings people to the Lord, teaches us the tenuous nature of life and teaches us a faith that those who have not suffered loss can never know. A child not even breathing for an hour, can have an impact greater than a famous preacher. The purpose of a life is not ours to decide nor in our hands: it is brought about by God.” -Author Unknown

I do not think I will ever cease to be astounded over the impact Lilly had, and still has even in her death, on so many people during her 17 short months on earth.  I will never cease to thank God for her.

"Before I formed you in the womb I knew you, before you were born I set you apart; ...." - Jeremiah 1:5

THANK YOU to whoever left these adorable polka dotted star stickers in my husband's inbox this past Wednesday.  (The 15th)  I love them!  I really like polka dots.  :)  These will be perfect for Lilly's scrapbook and a few other projects!

Thursday, May 16, 2013

Rainbow onesie for a rainbow baby

Solomon is wearing his new rainbow baby onesie that I bought from Angel's with Wings (on Facebook).  (Thanks to my cousin D.L. for telling me about them!)  The onesies come in different sizes and you can get different colored lettering.  (Note they can take 4-6 weeks for delivery.)  Solomon's onesie says:

 After every storm there is a rainbow of hope
(picture is a rainbow made of different colored hearts)

The other day, I overheard Hunter talking to Frank about Solomon.  Hunter said "It's so nice to have a boy baby that is staying alive."  Then he added, like he was really impressed, "And he's only been to the hospital once!"  Frank pointed out that Solomon was actually born at the birthing center, like Hunter was, instead of the hospital.  But Hunter corrected him and said that Solomon had been to a hospital - when we dropped off our Lilly donation.

Bella Santorum (picture at right) reached another major milestone a few days ago - she turned FIVE years old.  Bella, daughter of Rick (former senator and presidential candidate), has full Trisomy 18, like our Lilly did.  Rick mentioned Bella in a recent article called "Saints Among Us" he wrote for World Net Daily.   Rick has some information on Trisomy 18 on his blog at Bella's Corner

"For He will give His angels charge of you, to guard you in all your ways. On their hands they will bear you up, lest you dash your foot against a stone." - Psalm 91:11-12

Remembering my Lilly, who became an angel 17 months ago yesterday:

Monday, May 13, 2013

Visits to the hospital and Lilly's grave for Mother's Day

Warning - if you only like to ready happy, jolly Mother's day posts then stop reading here!

Every since Lilly entered my life, Mother's Day has been a jumbled up day.  The one Mother's Day we were blessed to spend together, she was in the hospital with a virus.  She code blued that morning and almost died right before my eyes.  I just re-read the blog post I had written about it, and thought about how numb I was writing it.  It conveys very little of the complete horror and all the emotions I felt, and much description.  But of course I won't forget and I can still see much of the scene played over in my mind very clearly.

Aside from my Lilly though, Mother's Day makes me think of so many other children I know of who are now in heaven.  Not only so very very many other children that had Trisomy 18 like Lilly did, but some children that were healthy otherwise, but died in an accident.  And quite a few miscarried babies.  My heart aches for these other moms.  Mother's Day is just a reminder of all that.  Not that we don't think about our angel children every single day anyway.  But somehow Mother's Day is just more "in your face."  Makes me wonder who made up Mother's Day - was it a greeting card company?

Did you know that the Sunday before Mother's Day is Bereaved Mother's Day?  Now that's not happy sounding at all.  But at least those mom's and children get the official "in your face" recognition.  Only most probably don't because not a lot of people know about it.  Maybe those greeting card companies would help out by publicizing it more.  Aaron is a 3 year old boy who is still living, in spite of having Trisomy 18 and being through many hospitalizations.  His mother wrote a very good blog post on Bereaved Mother's Day which you can read here

I appreciate so much of the work done by SOFT, a support organization for Trisomy 18, 13, and related disorders.  This weekend they put up a moving banner of Trisomy children and their mommies.  It makes me feel good that they find so many ways to honor Trisomy children and their families.  Lilly and I are included in the mommy collages!  (Go to their homepage and scroll down.)  They have the below picture of us cropped and in the first three collages.  (You can click on the little round buttons at the bottom of the collage to get to those pages.)  The reason I choose this picture of Lilly and I from her 1st birthday party was because of the huge milestone it was for her to reach that day.

We started off Mother's Day this year with a trip to the ... emergency room!  My husband must have thought that would make the day extra memorable for us.  (Actually his mama made him go!)  On Saturday he said his finger was bothering him (it looked like he had a blood blister that was growing) and that he felt incredibly tired.  By yesterday morning his finger was huge and gross and a dark oozing purple.  It really hurt him and he could barely keep his eyes open.  My brother-in-law took him to the emergency room.  They are guessing he got a spider bite and cut the wound open and drained it.  Gave him an antibiotic by IV and a pain killer.  They did a quick test on his blood and that came back normal.  Then they sent him home with a prescription for more antibiotic.  Lord willing, he'll be feeling back to normal before long.

In the afternoon, we visited Miss Lilly's grave and took her a new wreath.  Even though I know it's just her body in the ground - that her soul is in heaven and her memories with me wherever I go - it felt good being at her grave.  Another physical reminder that she lived on this earth with us.  Here is Solomon by Lilly's graveside yesterday:

"Set your minds on things above, not on earthly things." - Colossians 3:2

Friday, May 10, 2013

Plan A or B? or C? maybe D? ...

There's no doubt about it, life is messy.

Today Solomon made his first mess while playing.  I was zoning out washing dishes and he opened the drawer and shook out a bag of twist ties all over the floor:

(If you are wondering about his necklace, it is an amber bead necklace.  It is supposed to help lessen the pain of teething, among other discomforts.  Tabby has one and she swears it really has helped with headaches.)

What happens when a goal you set does not work out?  Do you just move on to a "Plan B"?  I do.  And if that doesn't work I go to "Plan C" and then "Plan D", etc.  I'm a planner at heart, and even though things don't usually turn out like I plan, I still love planning.  (And I have the lists to prove it!)
The other day, I was reading a book entitled A Woman's Wisdom: How the Book of Proverbs Speaks to Everything by Lydia Brownback and I read something that still has me thinking "what?!"  The author wrote (p. 35):

"Many of us have lived long enough to know that goals are better termed hopes, since we have seen many of our best-laid plans go astray.  Over time we might come to think of what we wind up doing as a sort of Plan B.  But the truth is that there is no Plan B.  There is only Plan A.  That's because

'The plans of the heart belong to man, but the answer of the tongue is from the LORD.' (Proverbs 16:1)

If we think we are stuck in Plan B, it's because our idea of Plan A was just that--our own idea, not God's."

I believe God is sovereign in all things.  Yet I just never had really thought about this like this.  It still just has my mind turning around and around.  All the messes I have made in my past (and OK - I still make messes in my life way too often) are all part of God's Plan A for me?  How humbling.

"The mind of man plans his way, But the LORD directs his steps." - Proverbs 16:9

What do you think of there being only Plan A?  Am I the only one that is a new idea to?

Sunday, May 5, 2013

A bigger peep! and donation completed

photo: in the parking garage at UNC, headed for the elevator

Thursday the kids and I got our first Lilly Memorial Project safely delivered to our contact at UNC hospital.  I was really excited to go - so many Lilly memories from there.  She was born there and had a lot of doctor appointments there.  Driving there I kept feeling liked she should be with me.  And yes, it was sad too.  I was so thankful for my rainbow baby to tote around like I used to tote Lilly.  (To read about what we donated click here.) 

Waiting for L.W. to meet us - she was such a great resource and helped me so much with getting Lilly's care setup:

Leaving the hospital - Hunter had fun riding in the wagon.  Of course a stranger had to ask if he could ride in the wagon too:

Thank you Miss Lilly for all the inspiration!  I hope we make you proud!

I've already decided what project #2 will be.  In honor of Lilly's birthday in July ...

The chicks got to taste the outdoors again yesterday.  They loved it!  But still aren't big enough we can leave them out yet.  I thought Solomon was growing fast, but these chicks are hyper speed growers!  Amazing how fast they are changing.  Here's a few pictures from yesterday:

Solomon was carefully helping watch the chicks (in between trying to eat grass):

We have to use heat lamps to keep the chicks warm enough.  We explained to the kids that chicks don't need heat lamps if they have their mama's with them because they snuggle under her warm wings.  Ever since talking about that, I often find myself thinking of God when I look at our chicks and their heat lamps hanging overhead:

"He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart." - Psalm 91:4