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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

Tuesday, July 7, 2015

Keeping busy on Lilly's - and our country's - birthdays

a beautiful Lilly colored bouquet

I'm thankful that there is so much to do on Lilly's birthday/Independence Day.  Staying busy and distracted make the day fly by and keeps me from brooding and getting too sad.  (Keeping busy and doing special things for others is a great way to beat depression in general!)

Lilly is buried a couple hours east of us.  Frank is from that area and still has family there.  So we packed up and went for a short visit.

We arrived Friday just in time for lunch at our family's very favorite place to eat.  Frank's sister Ginger owns Gingerbread Bakery & O'Neals Snack Bar in Belhaven, NC.  Frank's mother, sister Nikki and her husband Dennis, met us there.  They are big fans of Ginger's cooking too!

Solomon tried a highly recommended strawberry cupcake for dessert and added his approval:


After lunch, we went to the store to buy 5 birthday balloons to release at Lilly's grave the next day.  Unfortunately there wasn't much to choose from.  We ended up with 2 birthday balloons - both of which said feliz cumpleanos (happy b'day in Spanish) - 2 star shaped balloons (one pink, one blue), and 1 red heart shaped balloon that said "I Love You."  Hmmmm.


Lilly's birthday aka Independence Day aka the 4th of July was hot and sunny.  We headed to Belhaven for the parade.  We waited for it to start in the wonderful a/c and atmosphere of Ginger's Bakery (which was closed to everyone else).  While there Solomon sampled a chocolate cupcake.  He recommends this kind too:


Ready for the parade to begin!


It was so bright, you had to wear shades ...




The boys loved the old tractors.  This John Deere was Hunter's favorite:


Solomon and I liked the creepy gorilla best:


The float of the Pantego Historical Museum (my mother-in-law is the current president for it):


Just a plug for the museum - they are having a Fall Days/Farm Ways Community Festival on October 10.  We really enjoyed going to it last year, and even met Blackbeard the pirate!  (See my post here.)

 What's a parade without a stilt walker or grown men in little funny cars?





After the parade, we headed to the Pantego Historical Museum for a hot dog lunch.  I love the old historical school building:


Pantego Academy was in operation from 1874-1907.  Then it was Pantego High School from 1907-1981.  The museum has all sorts of interesting displays from both school life and the life of the locals, from the past.  There is also has a new gift shop area. Tabby and I were proud that the gift shop's first sale was ... two bars of our goat milk soap!  (Those are 2 Lilly-colored ruffle scarves for sale too, made by Tabby).



A cheerful student:


I love the old chicken waterers:


Tabby was able to eek out a little music on the old pump organ:


Proof that I was actually on this trip:


After that we went back to my mother-in-law's so Solomon could take a much needed nap.  Then we went to supper at Ginger's house.  Disaster struck on the way when we put down some windows to let mosquitos out and THREE of Lilly's birthday balloons flew right out the window!  Oh that was so so sad.  And I was so angry at myself for not making sure they were tied down securely inside the car.

That was seriously NOT part of the plan.  :(

But a birthday cake for Little Firecracker was:




I'm so thankful for relatives that don't mind having a party for Lilly with us.

After supper and some play time, we headed to Washington, to Lilly's grave.  We sent her up the remaining two balloons:






Finally, it was time for fireworks.  We stayed in Washington and after searching for awhile, found parking near the estuarium.  We walked out onto a pier on the Pamlico River to watch the fireworks.  Tabby got some really good pictures of the fireworks and I'll post them on her next photography post, later this week.

And that was that.  Lilly's 5th birthday celebrated all day long.

I am so grateful for the messages, emails, and cards we received from people remembering Lilly.  Here are a few pictures from people that I can share.  The first is Lilly's name written in the sand in Port Huron, Michigan.  It was sent to me by the big sister of Faith.  (Faith is a 6 year old girl living with Trisomy 18.  Her blog is here.)

Port Huron, Michigan
The other is Lilly's tree in ... Israel!  A family that lost a daughter with Trisomy 18, and I believe son with Trisomy 13, planted memorial cherry trees in their yard for their children and for Lilly.  :)  Here is Lilly's tree from winter and spring:




"The LORD is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God." - 2 Corinthians 1:3-4

Saturday, July 4, 2015

Happy 5th birthday, Lilly!

Lilly - 1 year old
 Dear Lilly,

In honor of your 5th birthday, here are 5 things I miss about you:

1) your kisses, smiles, laughter, and snuggles
    1a. the way your crazy stick up hair tickled my neck and chin when I held you close

2) your love for your family - how you would watch your siblings and parents and smile at them

3) your enjoyment of experiencing new things and sense of wonder

4) watching you work/play hard - you worked so hard in your therapy sessions and in your own playtime

5) nighttime - laying you on the bed and seeing you look up and smile at the ceiling fan and begin your nightly chat with it.  Then seeing your happiness at being put in your little co-sleeper next to my bed.  My falling asleep watching you sleep.

Wait a minute, only 5 things?  I know, I know, I said 5 because of your 5th birthday.  But Lilly there's so many other things - like you playing your sock trick (yes you Miss Sneaky Lilly), or you grabbing onto the frog on your bouncy seat and playing music, or me getting to dress you for the day, letting you play in the bath, taking you for walks, dancing around with you, etc etc etc.  Maybe I could get it all in if it were your 500th birthday?

I will always love you, my little firecracker.  I miss you so much but am comforted knowing you are in a perfect place.  I can't wait to see you again one day!

Love always,
Mama

Lillian Eva

Thursday, July 2, 2015

An up and a down on the roller coaster of grief

Emotions are definitely heightened when an anniversary approaches.  The day after tomorrow is Independence Day, aka Lilly's birthday.  Knowing that that's just how it is, is helpful.

Yesterday afternoon, Frank came in to tell me that Icky was dead.  Ichabod was the Black Austrolorp chick that had a health issue that I just couldn't get to go away.  Solomon and I went out to see and I wanted to pick up Icky one more time.  Awwwww ...  My heart had gone out to this chick in particular because of her illness. 


As I walked back inside, I felt this crushing blackness and anger at myself for not figuring out how to heal Icky.  The logical side of myself told the emotional side that I was being ridiculous - it was "just a chicken" and things like that happen.  The gloom continued to grow and I found myself thinking about Lilly and all the things medically that I wished I had done different for her.  I blamed myself and became furious at myself for not doing a better job with her.  Of course my logical side kept saying "you did the best you could with what you knew then."  My emotional side answered "Shut up! It wasn't good enough!  If you had done better Lilly would have been celebrating her 5th birthday in your presence!"

Goodness - do you ever have wars in your head?  I hope I'm not the only one!  Anyway, logical side finally won out by repeatedly reminding me that this is all the more painful because it's anniversary time.  Thankfully that battle didn't last too long.

Icky - photo from about a month ago

Last night, Solomon had coughing fits that quickly turned into croup.  I held him, propped against me, most of the night.  His coughing was that loud barking and sounded like he was choking at times.  I frequently sat him all the way up during a coughing fit, then gave him a little water.  Then we laid back down.  He clung onto me and I felt so bad for him and prayed for him. 

But one thing struck me, I was handling it just fine!  He's had croup a couple times now and the other times I almost fell apart.  I was terrified that he was going to die!  Respiratory stuff scared me so bad because I would of course think of Lilly and the times she almost died because of breathing issues.

So I thanked God for my progress.

Why do I share these things?  Just to put them out there in case they help or encourage anyone else on this journey.  I know I have been helped so much by other bloggers, ahead of me in the grieving process.  I would read something and think "Oh good!  I'm not crazy!  This is normal."

I was smiling this morning, thinking about how much Lilly loved adventure.  She loved going new places and taking it all in.  I've been talking to Solomon about zoos, and showed him our zoo trip pictures with Lilly earlier this morning.  (When the weather is cooler we need to go again and take Solomon.)  Here are a few pictures of Lilly's trip to the Ashboro Zoo, October 2011:

Riding a (fake) baby elephant

Lilly and Hunter in front of the giraffe area
Lily by a pond of lily pads

Monday, June 29, 2015

Making red-white-blue angel wings & decorating for July 4th/Lilly's birthday

Yesterday was my day to decorate the house for Lilly's birthday - and July 4th.  It was special that she was born on Independence Day.  I love all the cheerful "Lilly colors" - red, white, and blue.

I decided I wanted red/white/blue angel wings.  I couldn't find them anymore (always shocking when I can't find something on Ebay!) so I made my own.  I got out some angel wings I already had and my trusty cans of red and blue spray paint, and went outside.


I used paper to block off the parts I wasn't spraying.


The paint did not saturate the fluffly top feathers as much as the "regular" bottom feathers.  But I was still pleased with the unique results:
 

I thought the wings added a nice touch to the mantel area, where I have some Independence Day decor arranged, along with Lilly's birthday decor. 


Lilly's birthday present for this year is a little vintage angel girl.  (I just love the little figurines that Japan produced in the 1950s.)



Lilly's Crazy Sock Monkey has his pinwheel and is ready to remember her and celebrate too:


Crazy Sock Monkey sits over Lilly's tree, which is covered in 4th of July decor:


The finishing touch is outside, where I hang bunting on the railing of Solomon's portico.  (Our second story porch.)  I love this bunting, and had it when Lilly was still alive. 


Here is a picture of Little Firecracker, taken just a few days after her 1st birthday.  I loved holding her! You can see the bunting in the background:


I wonder what it would be like to be celebrating Lilly's 5th birthday with her in person.  What would she be like?  It makes me smile to imagine.

Sunday, June 28, 2015

The Eye of Tabby: photography for the week of June 28

I continue to be impressed, amazed, and inspired by how Tabby views the world through her camera.  So, I thought I would try doing a weekly (or so) blog post showcasing her recent photos.

Enjoy this week's picks!