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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

Monday, July 8, 2013

There's a snake under her boot ...

This morning I was putting Solomon down for his nap and I faintly heard Tabby calling me.  It took me at least 5 minutes to finish up and then go find her.  When I finally found her, she was outside, standing on a ... long black rat snake!  (Thankfully she had her high rubber boots on.)  She asked me to please hurry and kill the snake.  I ran and got my boots on then ran to the woodshed and grabbed a shovel.  Ran back to Tabby and started chopping at the snake.  (The front half of the snake was under a small rubbermaid shed.)  It took several chops with the shovel to cut it open and then the guts spilled out.  Yuck.  Of course the tail area was still wiggling.  Tabby and I moved the shed and the front half of the snake wiggled out.  Chop!  Off came the head.  Then I scooped up the parts and tossed them into the woods.  Tabby was thrilled we had eliminated a rat snake.

I asked her how it came to be that she was standing on a snake!  She said that she was out back and the rooster started making all sorts of racket and attacking something.  She hurried over to see and saw the snake and thought it had it's eye on her little silkie chicken, Taffeta.  The mama hen in Tabby took over and she stomped down on the snake as it tried to get away.  Then she stood there on it until I came out.

Wow.  My girl is so brave!  And I can now say I've killed my first rat snake.  (Bleech.)  The other day the rooster bit the head off a baby snake.  He may be one bossy rooster, but we are liking him!

This evening I told Tabby it was too bad we didn't have a picture for the blog!  She just shook her head and said she did not care for looking at guts.  I'm sure most of you feel the same way.  :)

I'm so encouraged that there have been several orders place for my Thirty One fundraiser!  I wanted to just share quickly about my very favorite Thirty One tote.  It is called the "organizing utility tote."  I use them for files and homeschool things.  The first one I got, embroidered with "My Angel Lilly" has many of my Lilly related files and blog stuff in it:



I found you can keep your contents straight, and the back from tipping over, by using an clear "open top file box" inside it.  I got mine for less than $10 from Staples:


Through Thirty One sales, I've gotten two more of the organizing utility totes.  One has Hunter's homeschool workbooks inside it, and the pockets are stuffed with flashcards, scissors, tape, pens, stopwatch, etc. That one is embroidered with "Aletha Academy," the name of our homeschool.  ("Aletha" is the Greek word for "truth.")  The last tote, embroidered with "Grow In Wisdom" contains all of the character study books and notebooks that the kids and I use for that subject.  (I'll share more about those books soon as I'm very pleased with them.)


I love having the stuff kept together in the totes.  And it's easy to pick them up and take them wherever I need them!  If you're an organizing junkie like me, you'll love this bag.  :)

JOIN US FOR OUR FUNDRAISER THROUGH JULY 27TH! I am holding a Thirty One gifts fundraiser this month. All earnings will be split between SOFT and my own Lilly Memorial Project. Go to our party page by clicking https://www.mythirtyone.com/NikkiHuffman/ , click on "My Parties" on the left, and then clicking on "The Lilly Memorial Projects Thirty-One Fundraiser." THANK YOU!

Sunday, July 7, 2013

Funny animals are "good medicine" AND more on July 4th

I was fighting depression off and on last week.  I know it was simply that "anniversary depression" because of Miss Lilly's birthday.  Yesterday something highly amusing to me happened, and that seemed to "bring me back" and I've been feeling OK since.

"A cheerful heart is good medicine, but a crushed spirit dries up the bones." - Proverbs 17:22

What happened was that yesterday morning, the boys and I walked the perimeter of the goat area, to be sure the fence was OK and all looked well.  One of our dogs, Dixie, came along with us as usual.  But then we were joined by an unlikely companion - our rooster Chanticleer.  As we entered the path into the woods, I figured the rooster would turn around in a minute or so.  But he did not!  That rooster proceeded to follow us the entire route, which took a good 10 minutes since we stopped to look at things a couple times.  Chanticleer even kept up a quick pace, following us at a jog.  It just struck me as something so hilarious since I've only taken dogs for walks.  A rooster going for a walk?  Chanticleer did stop once and when he went off the path, Dixie took it upon herself to quickly bark at him and herd him back to the path.  Hunter and I were cracking up.  :)

We are enjoying all the goats, though sadly one had to be put down last week.  Topaz had a messed up leg and it wasn't getting any better.  So the L family came and got her.  Another nanny goat - Nausette - is still quite sick.  I've been using some of Lilly's syringes to squirt water mixed with probiotics into her throat, and also giving her a really strong dewormer.  Since the antibiotic we gave her recently didn't help, we've ruled out pneumonia, and think it's bad parasites in her lungs.  The kids have been praying faithfully for Nausette's healing so that she doesn't have to be put down too.  I learned so much medically in caring for Lilly and honestly am enjoying this "outlet" in caring for this sick goat.  I am sure that sounds weird, but that's how I feel.  Though I do hope she gets better quickly of course!

Tabby is such a mama to our chickens still.  I often glance out the window and see her micro-managing them.  I most enjoy seeing her chase them!  She loves holding them.  You can see how big they've gotten in this picture.


Well that's our "farm update."  I thought I'd share a little more about our celebration of Independence Day / Lilly's birthday.

The day before the 4th, we stopped at the dollar store and bought birthday balloons.  Both Tabby and Hunter each picked out three, to release later at Lilly's grave.  While in line to pay, this elderly woman was talking to another woman in line about the birthday balloons that person was buying.  They were for a girl's birthday.  The elderly woman was very upbeat and turned to Tabby and said something to her about her balloons.  I heard Tabby respond "They are for my little sister."  The woman asked her how old her sister was turning.  Tabby told her that her sister would have been 3, but she was dead, and were taking them to her grave.  I glanced at the woman and our eyes locked.  I suddenly wanted to burst into tears so I was only about to smile a little.  The woman just got the most crestfallen look on her face.  She said quietly "That is a very sweet gesture" then stepped back in line and just stared at the floor. 

Later that day, one of the balloons Hunter had chosen blew right out the door of our vehicle.  I was so disappointed but Hunter cheerfully said "Lilly is getting a birthday balloon a day early!  See that balloon is going right up to her in heaven!"  Love his attitude.

On the morning of the 4th, I decorated the angel food cake I made for Lilly's birthday:




I dressed Solomon in his Lilly-colored outfit:


 Then we headed to the town of Belhaven for their parade.  While waiting we got to first hang out in my sister-in-law's bakery - Gingerbread Bakery.  YUM!!  Hunter and I both enjoyed Lilly-colored gingerbread men:




LillyBear was with us to watch the parade:


My mother-in-law was in the parade representing the Pantego Academy Historical Museum, this year dressed as an Indian:


After the parade we had lunch, sang happy birthday to Lilly, and enjoyed her cake.  My previous post has pictures of our balloon release at Lilly's grave.

When we got home that evening, I had a special surprise in Lilly's garden.  Some red lily flowers had opened up that day.  A "hello I'm doing great!" from Lilly maybe?



Thursday, July 4, 2013

Happy 3rd birthday Lilly


Happy 3rd birthday, Little Firecracker!  You are greatly missed but I know heaven is perfect.

Lilly's above photo is featured on the homepage of SOFT today. 

We took Lilly balloons to her grave today and prayed as a family, thanking God for her.








Grief is tiring.  I will share more about today later.

In the meantime, if you care to, read my special guest post on Cindy-the-soap-nuts-lady's blog.  It is titled "Lessons I Have Learned from my Children."   Thanks Cindy for the opportunity!

Tuesday, July 2, 2013

Taffeta - our little "Trisomy 18" chicken

Wouldn’t you know it - when I announced my Thirty One fundraiser in yesterday’s blogpost, I initially made a mistake in giving out the Thirty One link.  And of course I didn’t catch it until the post was automatically emailed out by Google. :( I did fix it in the post.  Here it is again:
Jump to our party page by clicking https://www.mythirtyone.com/NikkiHuffman/ , click on "My Parties" on the left, and then clicking on "The Lilly Memorial Projects Thirty-One Fundraiser."

Taffeta photos by Tabby.

 I’ve mentioned before that one of our Silkie Bantam chicks is a runt.  Tabby named her Taffeta and  Hunter says she’s so small because she has Trisomy 18 like Lilly did. I greatly enjoy watching the chickens running around our backyard.  But suddenly the other day, I just felt like bursting into tears watching cute little Taffeta trying so hard to keep up with the “big” chicks.  She reminded me of Lilly!  (OK ... the logical part of my brain says “stop!” You are associating a chicken with your daughter because it is almost her birthday and she isn’t here to celebrate it with you and so that is why you’re thinking of her more than usual and wanting to cry at so many things.  Self - logic talk over - let’s just go with this.)

(above) Little Taffeta by a normal sized Delaware chicken.

Taffeta is not much more than half the size of the other chickens, who are all her age.  (Slow growth.  “Failure to thrive?”) She is such a spunky little thing though!  Such a fighter!  (Like our Lilly was a fighter - that how she got the name “Little Firecracker” within a few hours of her birth.)  She has her funny way of running around and tries to keep up with the other chickens.  But some of the other chickens are just plain mean.  They sit on her and pull her feathers out.  (Just like many people in the world don’t think special children are worth it.)  But in spite of the bad treatment, Taffeta seems to be a happy little chick and is very sweet to us.  (Just like Lilly didn’t worry about the world saying she was “incompatible with life” - she was happy and loving.)  Taffeta is very brave too - she even stood up to the rooster when we first brought him here.  And her small size came in handy as she was able to dodge all his pecks by running under him!  (If you’ve read even half of Lilly’s story on this blog - you know she was one brave little girl!  She even won over a number of doctors that initially didn’t have any hope in her.)



As I watched Taffeta, I thought - she just may be the chick that makes me cry when she dies.

Monday, July 1, 2013

My Thirty One gifts fundraiser for SOFT and The Lilly Memorial Project

UPDATE:  Thirty-One link is corrected below.

Today is July 1st!  My home is decked out in red white and blue both to celebrate July 4/Independence Day - and . . . Lilly's 3rd birthday!  Of course Lilly is officially celebrating with Jesus, but our family will be doing things to remember our little angel girl.

Yesterday I "gave" Lilly her birthday present.  I have been buying her a July 4 themed figurine for each birthday.  Here is this year's - a patriotic bear with a firecracker:


Last year I learned about Thirty-One gift products.  As they have a great variety of bags and organizers, I was delighted.  I love useful things!  I've since gotten a collection of their products, obtained through great sales, which I will be sharing throughout this month.

photo:  Thirty One's "organizing utility tote"  - embroidered with "My Angel Lilly" - holds many of my Lilly related and project files

From today, July 1, through Saturday, July 27, I am hosting an online party for Thirty-One.  This party is a fundraiser!  All earnings I receive will be split in half.  Half will be donated to  SOFT (Support Organization for Trisomy), a group that helped us so much during Lilly's life and still are supporting us.  The other half will go for my own Lilly Memorial Project, in which we are reaching out to other angel families, spread trisomy awareness, and do other helpful projects in Lilly's memory.

Please consider ordering something and know that you will get a great product and some of that money will go to excellent causes.  Our Thirty One consultant is Nikki.  Jump to our party page by clicking https://www.mythirtyone.com/NikkiHuffman/ , click on "My Parties" on the left, and then clicking on "The Lilly Memorial Projects Thirty-One Fundraiser."  

For every $31 you spend this month, you can get 31% off any other item.

If you have any questions, email Nikki at: nikkiloves31gifts@gmail.com or email me at:  LittleFirecrackerLilly@gmail.com

If you would like a printed catalog, please just let Nikki or I know.

I will be sharing more about Thirty One products and how I use them in the coming days.  :)
 

Thursday, June 27, 2013

I shot a goat ... And adenoids/tonsils info for low muscle tone children

Stay tuned! I am going to soon be announcing a special Thirty One fundraiser I am hosting in July which will benefit SOFT and The Lilly Memorial Project.

When I was in college, I lived with my dad and stepmom for a bit.  My step mom had an old diabetic cat named Popsie who needed a shot of insulin every morning.  I learned to give her the shots and whenever I did, I would always leave a note out for my step mom - like "I shot Popsie"- so she knew not to give Popsie more.  

Amazingly, with all the medical treatment I learned to do to care for Lilly, I never had to give her a shot.  So thankfully I had the experience with old Popsie to fall back on today, as I prepared to give Nausette the goat a shot.  Here is Nausette and her babies, Cloves and Nutmeg:


Nausette hasn't been feeling well since she got here, and seemed to be getting worse.  So yesterday, her owner K. came to pick her up and take her to the vet.  (Nausette got to ride in the back of K's minivan again!)  The vet thought Nausette had either pneumonia or some type of parasites on her lungs.  So she prescribed an antibiotic - to be administered in shot form.

Today I showed Hunter the shot - with the super long needle - and told him to be careful and never touch it.  Then I promptly stuck my own finger.  Ouch!  Thankfully I hadn't filled it with medicine yet.  I watched a YouTube video to be sure I understood the right place in Nausette's shoulder to give her the shot.  Then we went out and ... shot her.  She was a brave girl and didn't cry.

We are really enjoying taking care of the L family's goats and dogs for them.  They can be pretty funny.  Here is what we see in the morning, starting shortly before the time Tabby goes out to feed the dogs and milk the goats:


The dogs and goats are so big compared to Hunter.  But they are all gentle with him.





Last week we were given a rooster by a family who ended up with him unexpectedly.  Their chick "Princess" turned out to be a "Prince."  When we introduced him to our chicks, he quickly showed that he planned to be in charge.  We re-named him "Chanticleer" after the rooster in the book The Rooster and the Fox.  He is a few weeks older than our chicks and quite bossy.




 On a completely different note, I was very interested to read on Giuliana's blog some information on adenoid and tonsil removal surgery for children with low muscle tone.  (Giuliana is almost 3 years old and has mosaic Trisomy 18.)  From what her mama has read, and Giuliana's ENT doctor confirmed, removing the adenoids and tonsils in children with low tone can actually increase their issues.  If this is something you are considering for your child, please read Giuliana's mama's blogpost for more details:  http://g-giftoflife.blogspot.com/2013/06/early-summer-madness.html

Just a week from today, on July 4th, our Lilly would be turning 3 years old.  Instead she'll celebrate with Jesus.  Tabby made me a special necklace in honor of our "Little Firecracker":


Tabby makes and sells bottle cap necklaces, along with soap, ruffle scarves, chocolate lollipops, tie dyed baby clothes, beaded jewelry - etc! through her blog The Craftsy Kitty. 

I was thinking how grateful I am for HOPE.

"Rejoice in hope, be patient in tribulation, be constant in prayer." - Romans 12:12

Tuesday, June 25, 2013

That's not on my list!

Waking up this past Saturday morning I had great intentions about all the things I would accomplish.  Everything was written in my "daily docket".  (That's the fancy name for my daily to-do list.)  Yes I am a list maker.  One of those weird list makers that adds on things I've done already just so I can cross them off.  (That's bonus accomplishment!)  Of course with a baby, and a clingy baby at that!, I try to keep my daily expectations realistic.  But still, I think I would panic if I did not wake up with a pre-written or mental list of some things to-do.  However I am realistic enough to know that there are plenty of days where not one thing will be checked off.

 Years ago I loved reading the Arnold Lobel's Frog and Toad stories, to Tabby and am now reading them to Hunter.  There are several that make us laugh so hard.  Frog and Toad are best friends.  Frog is always cheerful and Toad is so melancholy. 

One story that we really like is in the book Frog and Toad Together and it is called "The List."  (We are a whole family of list makers so even Hunter appreciated this story.)  Toad wakes up one morning and writes "a list of things to do today."  Then he carefully crosses off each thing as he accomplishes it.  However, when he is about halfway done with his list, a strong wind blows the list out of his hand. 

"Help! cried Toad.  "My list is blowing away.  What will I do without my list?" 

Hurry!" said Frog.  "We will run and catch it."

"No!" shouted Toad.  "I cannot do that."

"Why not" asked Frog.

"Because," wailed Toad, "running after my list is not one of the things that I wrote on my list of things to do!"

Saturday turned out to be a major "this is not on my list!" kind of day.  It started with me finding that a mouse (or mice) had been into my bags of rice, flour, and beans in a cabinet.  Then finding mice evidence on the kitchen counters.  I thought "BLAH!" echoing one of Toad's favorite expressions, "this was not on my list!"  I began cleaning and pouring bagged stuff into jars.  Then Solomon started crying - he had rolled over during his nap and woke himself up.  A 30 minute nap for my baby?  That was not on my list!  Then a cabinet door fell of it's hinges.  Not on my list!  Then when I hurriedly went to vacuum, Hunter pointed out it needed emptying.  That was not on my list!  Etc. etc.  Remembering Toad at least helped me keep my sense of humor.

The next morning, Hunter showed Frank where Solomon had broken part of the dishwasher a few days previously and I couldn't figure out how to repair it.  (Frank had been out of town most of the week at the annual Association of Classical Christian Schools conference and Hunter was most anxious to have the part fixed.)  Frank worked at it for awhile but was having trouble.  He sighed and said "This was not on my list for today."  I had to smile.

Hunter is wondering ... will Solomon be a list maker?  :)

 
What about you?  Do you like making lists?  Do you have a favorite place to write them down?  :)