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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

Wednesday, March 30, 2016

"A mother never forgets ..."

In The First Four Years we learn that Laura Ingalls Wilder's second child was a boy.  However, he only lived several weeks before he died suddenly after having "spasms." 

There is a book series called "The Rocky Ridge Years" which is about Laura, Almanzo, their daughter Rose, and their life in Mansfield, Missouri.  These books were written by Roger Lea MacBride.  MacBride was like a grandson to the adult Rose and she told him many stories about her growing up years.  MacBride later took these stories and turned them into the book series.

Recently while reading New Dawn on Rocky Ridge, I found myself tearing up at a chapter called "A Mother Never Forgets." In this chapter a family that are friends with the Wilders lose a baby boy.

After baby Earl's funeral, Laura goes home and sits down at her kitchen table and cries harder than Rose had ever heard her cry.  Then Almanzo began to cry.  Rose cried along with them.  When Laura finally stopped:

"I'm sorry," Mama said.  "It's just I can't help remembering our own little boy."

Papa nodded, snuffling.  "I been thinking of it myself."

"When the preacher said Earl's name, it . . . it just tore at me that we never did give that child a name of his own before we buried him," she said mournfully. 

. . .

"Oh, Mama," Rose cried out, fresh tears wetting her cheeks.  "I'm so sorry."

Mama sighed heavily, gazing at Rose's hand and caressing it.  Softly she said, "A mother never forgets, Rose.  I might not speak of it, but as surely as you have been by my side, he has always been in my heart.  When a mother loses a child, she never forgets."

   - New Dawn on Rocky Ridge, pgs. 142-143.

Lilly - 4 days old

That of course is so true.  Every time I hear about a baby dying suddenly, I think of Lilly.  I assume it is the same or very similar for people who have lost a spouse, or a parent, or children that lost siblings, etc.  We mourn with whoever it was that just lost a loved one, and we mourn all over again for ourselves and who we lost.

Eskimo kisses with Lilly (1 year old)

"He will swallow up death forever.
The Sovereign Lord will wipe away the tears
    from all faces;
he will remove his people’s disgrace
    from all the earth.
The Lord has spoken.

In that day they will say,
“Surely this is our God;
    we trusted in him, and he saved us.
This is the Lord, we trusted in him;
    let us rejoice and be glad in his salvation.”  -
Isaiah 25:8-9

Saturday, March 26, 2016

Field trips and fruit loops

Earlier this month, my children and I met our field trip group at Stagville Plantation, in Durham, North Carolina.  The home was originally built in the late 1700s and by 1860, the family owned about 30,000 acres and 900 slaves.  This plantation was the largest in North Carolina.  I just love visiting historic homes and enjoyed our visit.  My kids - not as much as me.  But the boys really liked the hands on activities they got to do in the visitor's center before we took our tour.

I've been to quite a number of plantation homes in the south, and was surprised at how plain Stagville was.  However, we learned that the owners owned other homes.  Maybe those were fancier.

the Stagville Plantation home

back of home
 During our visit, we learned that the character Addy, from the American Girls book series, was based on Mary Walker, a slave who escaped from Stagville's owners in 1848.  (There is actually going to be a "birthday party for Addy" on April 9, at the plantation. Info is here.  If you live local, and have daughters that are big Addy fans - they can learn more about the real slave that Addy is based on.) 

Unfortunately we didn't get to explore the out buildings behind the house.  We next went to see an enormous barn on the property. 

Little fans - don't leave home without them!
The barn was so big!
Inside views:

Tabby - I liked the way the light came in around her
Finally we visited the slave quarters.  In order to try and combat sickness that the slaves suffered from - think hot, muggy summers with mosquitoes spreading illnesses - the owner had some really sturdy houses built for slaves.  Each house had room for several slave families.

Slave house
Hunter was frustrated because he kept trying to ask questions about the electricity or other modern things that had been installed in the home and one of the slave houses.  But the tour guides didn't understand and kept blowing it off with "Yes that was added later.  The original home did not have it."  Um, yes he knew that much ....

Recently Solomon went through a fruit loop crafting phase.  I bought a box of the Walmart brand of "fruit loops."  (Best $2.50 I've spent in a long time!) There were so many different things to make with them, thanks to Pinterest inspirations.  The first day I gave some to Solomon, he ended up eating a bunch after making a picture.  We don't eat "sugar cereal" in our home so I guess his body wasn't used to it!  After a while, the boy was totally hyper and loudly singing songs and being extra silly for a long time.

Here are some of fruit loop pictures he made (with some help here and there) over about 2 weeks.  This was a great activity for him to work on quietly while I was doing schoolwork with Hunter.

I cut out the plants and fish and drew the fish bowl.  Solomon glued everything down.  Hunter added the filter/pump.  

a sugary snack break
fruit loops onto a pipecleaner to make a candy cane

Solomon enjoyed the fruit loops activities so much that Hunter decided he simply had to try it once.  He made a Hunter kind of picture (I don't remember what kind of machines they are):

"Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ." - Colossians 3:23-24

Wednesday, March 23, 2016

6 + 6 a dozen chicks is ...

Last year, Hunter learned a math chant for adding doubles up to 20.  Lately we've gone around saying "6 + 6 a dozen chicks is 12!"  That is because last week Precious hatched out a dozen adorable chicks!

Yesterday the boys and I took Precious and the gang outside for some time in the sun.  The boys watched the chicks closely while I cleaned out the large dog crate that they are temporarily living in.  (Tabby loves everything about going to school this year but admitted yesterday that she missed being around for things like this!)

Precious marched the chicks around the little fenced area we put them in and instructed them as she demonstrated different chicken things.  It really is amazing to watch!

Great news about my aunt Pam that was hospitalized for double pneumonia.  The trach and feeding tube were removed from her and she is now threatening that if the doctors don't let her out of the hospital now then she will walk home!  :)  All her doctors said her progress has been remarkable.  Prayers really work - thank you so much for praying for her!

Finally, a big THANK YOU to those of you that donated to Tabby's fundraising project for Stop Hunter Now.  (See my post here.)  She has sent thank you cards to all the donors except for "Anonymous."  We found that "anonymous" is "Anna T" but I'm still not totally sure who you are.  So if you are reading this Anna T. - thank you so much for your generosity!  :) 

I believe Tabby is the top fundraiser in her class so far.  If you would like to contribute, here is that info. again:

If you would like to help sponsor Tabby's participation in Stop Hunger Now, you can make a tax deductible payment online on her school giving page at:   Every dollar helps!

Friday, March 18, 2016

Trisomy 18 Awareness Day 2016 - Donating my wedding dress for angel babies

Today is Trisomy 18 Awareness Day.   I never heard of Trisomy 18 until doctors began talking about it at my first ultrasound with Lilly.  Since then I've heard about it, read about it, and breathed it - living it for 17 months with Lilly.

My prayer is that as more people learn about Trisomy 18 then there will be more acceptance of it.  No longer will a baby with Trisomy 18 simply be thought of as "incompatible with life" but will be a baby worth fighting medically for.  Just like babies with Trisomy 21, Down Syndrome, now are.

The Trisomy 18 road is a hard one, especially because it can be so hard to find doctors willing to help, but if you are on that road - keep trying.  There ARE some doctors out there that believe these babies are worth it and are full of compassion!

Though Lilly had Trisomy 18, that did not mean that Trisomy 18 defined her.  She was still a real person!  She was a little girl that had feelings, that responded with smiles and laughter, that loved her family, and that had an intense curiosity of the world around her.  And an intense hatred of what she considered boring hospital stays!

Families of Trisomy 18 children across the world become linked together.  A part of each other's lives.  One mama that I have a special link with is Julia's mom.  Julia died the day after Lilly and I often think of both of our girls whenever Lilly's December angelversary comes around.  (I have a picture of Julia on our refrigerator too.)  Julia's mom has written several excellent, informative posts for Trisomy 18 Awareness day over the last few years.  Here are two, that I have linked:

"Trisomy 18 Awareness Day 2015: 18 Things You Should Know" 
"Why Trisomy Awareness Matters"

When I was in the hospital with Tabby earlier this year when she had pneumonia, we both thought a lot about Lilly.  After all she had been in that particular hospital twice.  I found myself wondering what I could do to honor Lilly for this year's Trisomy 18 Awareness day.  Then I remembered my sister-in-law Nikki sharing an article with me about a woman that turns wedding gowns into burial dresses for angel babies. 

I did some searching on the hospital computer and after several contacts, finally found myself in touch with a woman here in North Carolina that sews for "Precious Little Angel Gowns."  (Note - I initially contacted "Angel Gowns by Michelle" who was able to send me a list of email addresses for contacts in many states.)

For years, my wedding dress has just hung on the wall.

I like it, but I like the idea of it being made into little angel gowns to bless other grieving parents much more.

So I took it out of the plastic, and took a few pictures:

Then I put it back in the plastic, put it in a box, and added a note about my donation:

I learned from the seamstress, that when a dress is donated in honor of someone, that she makes a little keepsake from the dress to send them.  I think that is so thoughtful and look forward to seeing what it is.

St. Patrick's Day 2007

Wednesday, March 16, 2016

Stop Hunger Now Project - Tabby is Fundraising

Every year at Cary Christian School (where Tabby is attending this year), there is a day where the students pack meals for impoverished people.  So far, over 700,000 meals have been put together.   The school's goal is to hit one million this year. On April 22, Tabby will get to participate in this project for the first time. 

The Stop Hunger Now organization provides the school with the food stuffs and packaging equipment.  The students provide the labor and the cost of the raw goods.  It is estimated that each student will assemble 250 meals and each meal costs $0.29.

Students are seeking pledges to help pay for the meals they pack.  ALL money that Tabby raises will be used for the Stop Hunger Now project.  Plus, for all the money she raises, she will get credits towards the cost of her Senior Service Practicum.  This is a missions trip that the senior class goes on to Costa Rica. 

If you would like to help sponsor Tabby's participation in Stop Hunger Now, you can make a tax deductible payment online on her school giving page at:   Every dollar helps!

Yesterday Tabby got braces!  A very special gift from grandparents.
In other news, we've got some peeping going on!  Two of our hens got broody a few weeks ago.  We put lots of eggs under each of them and I explained to Hunter the phrase "not counting your chickens before they hatch."

Beru (left) and Precious
Precious's eggs are due to start hatching tomorrow so Tabby and I went out last night and candled the eggs.  (If it's dark, and you hold an egg up over a flashlight, you can see somewhat into the egg.)  We could see what seemed like chicks in about 5 of the dozen eggs.  We could even hear one peeping and one making little tapping/scratching noises.

Then this morning, Tabby found that one of the eggs had hatched!  She said the chick was so little.  I promised the boys we'd go out and look at it a bit later this morning.  Precious is our seasoned mother and should do a great job raising the biddies.

We don't have the same confidence in Beru because last year she murdered a chick!  (We had put some that we bought under her, hoping she would bond to them.  She did not!)  The eggs she is sitting on are due to hatch this weekend.  We hope she will redeem herself and prove to be a good mama hen.

Watching our hens raise chicks has made Bible verses like this one has really come to life and mean more to me:

"He shall cover you with His feathers,
And under His wings you shall take refuge;
His truth shall be your shield and buckler." - Psalm 91:4

Tuesday, March 15, 2016

The Eye of Tabby - Photography (and a video) for the week of March 13, 2016

Last Saturday, Tabby recorded herself playing a Star Wars medley that she arranged.  You can see the video on YouTube at this link:  (Note that you must use this link, and not just do a search for her, because it is set for private viewings.)

Tabby has been working on her "take a picture a day for one year" challenge.  She is keeping a journal where she titles and dates each photo.  She has so many interesting pictures in her photography folder it was hard to choose some to post.  And well, I ended up picking most of them!  Here they are: