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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, June 28, 2012

Alpha and Omega ... and my new maternity skirt

On the day Lilly was born, the hospital gave us the bear on the left.  A family that had lost twins donated the bears to the hospital as gifts for other families who had babies that died or were not expected to live.  I honestly struggled with all the sad thoughts wrapped up in that bear, and so I just put him on a shelf and ignored him. 

When Lilly died, the little white casket we buried her in came with a bear.  (This is the bear on the right in the picture.)  The bear's shirt says "loved and cherished."  This bear is precious to me - as it is from inside Lilly's last resting place on earth.

When I set up my dresser top with some of Lilly's things, I sat the bear on the right up there too.  Then not to long ago I thought about the first bear, and suddenly it became precious to me to.  We got it on the day Lilly was born!  I put it up on the dresser too, and put the hat Lilly wore home from the hospital on it's head.  I took another hat that my friend K. made for Lilly and put that on the other bear.  The bears are now complete ... together.  A bear from the beginning of Lilly's life (outside the womb) and a bear from the very end of her life (on earth).

I've dubbed the bears "Alpha" and "Omega."  Those are the first and last letters of the Greek alphabet.  But I also think of what Jesus says in Revelation:

"I am the Alpha and the Omega, the First and the Last, the Beginning and the End." - Revelation 22:13

In this last picture, I wanted to share my new maternity skirt.  When I'm not pregnant, and have lost my pregnancy weight!, I'm actually a skinny enough person.  But when I'm pregnant, and especially in the last few months, my body just seems to keep gaining weight in spite of my faithful exercising and good eating.  So, as I'm now in my last trimester, I am feeling and looking huge!  Recently I knew I would soon need to go up a size in some maternity clothes.  And as I thought about this, I started thinking I needed a "Lilly colored" outfit, like everyone else in our family has.

I have several maternity skirts that I love from The Modest Mom.  So I got the idea to contact the owner, C., and see if she would make me a maternity skirt if I supplied the fabric.  I shared a bit of Lilly's story and why I would like it.  C. replied she couldn't refuse my request.  :)  So I sent her the red fabric with white stars and she promptly sewed the skirt for me.  (She added a nice white stretchy panel at the top.  You can see it peeking out because my shirt is getting too short!)  Not only can you buy maternity skirts from The Modest Mom's website, but there are also women's skirts, tops, and nursing covers.  Everything I have bought is good quality.  And I am so grateful to C. for my special skirt!

And speaking of the reason I need this maternity skirt - "Rainbow Baby" seems to be doing very well.  I had an appointment with my midwife today.  He's in a good position (no longer breech - yay!) and his heartbeat is good.  We are really looking forward to meeting the little guy in September.  :)

Wednesday, June 27, 2012

Tied up with a bow

Did Lilly have kissable checks or what??!!  Our sweet girl was 10 months old in this picture.  I saw this picture today pop up on my screensaver and I just marveled at it: "awwwww ... she was just soooo cute!"  God really did make her special, in so many ways.  Mommy loves you and misses you Lilly!

"Before I shaped you in the womb, I knew you.  Before you saw the light of day, I had holy plans for you." - Jeremiah 1:5

Tuesday, June 26, 2012

Kit's Muse and some more R-W-&-B

Recently while I was online, I came across this picture of little white crocheted dresses that someone had posted.   I learned that the woman that makes them, donates them as a part of care packages for angel parents.  Lately I have been making pages of lists and notes of ideas of things to do in memory of Lilly, so when I saw the dresses I was quite intrigued.  Reaching out to other angel parents is at the top of my list.

So I contacted the amazing dress maker and learned about how she got involved in this.  (J. is the mama of a preemie that, praise God, is alive and doing well.  J. wanted to give back to the NICU and other's in need, through care packages.)  She has a website called "Kit's Muse" and is on Facebook.  Kit's Muse, her project's name, is a division of a non-profit group called Project Sweetpeas.
I learned a lot of helpful information from J. and added it to my ideas files. I look forward to soon sharing with my readers these ideas, of what I am going to be doing to reach out, in Lilly's memory, to others.  Today I talked to L.W., my contact at the hospital that Lilly was born at and had a lot of doctor's appointments at.  I was thrilled that L. was enthusiastic about my ideas.  I told her that I am the type that "just has to do SOMETHING."  I have already been doing little things for the families of other Trisomy 18 angels and children, but need to do more.  It is amazing, how in doing for others, we feel so much better ourselves.

Once again that makes me think of this scripture, of the apostle Paul quoting Jesus:  ". . . ‘It is more blessed to give than to receive.’ - Acts 20:35

A note regarding the second dress picture posted, J. made the little heart with the same material as the burial dress, and is a keepsake for the family.  I think that is a very special and sweet idea.

If anyone reading this is interested, Kit's Muse is putting together a very special Christmas tree at a mall in Missouri this year.  It will be filled with ornaments with the names of angel babies, preemies, special needs children - well actually I think ANY child can be represented.  You can send them an ornament representing your child, or buy one of their's and have it personalized.  You can read about how to participate here.  Lilly will have a personalized ornament on that tree.  Scroll down through the ornament pictures here and you'll come to an angel with a silver cross.  That is the ornament I choose for Lilly.  I will get to see a picture of the ornament on the tree, and then the ornament will be sent to me after being taken down.  I always buy each of my children an ornament each Christmas and I will use the angel for Lilly's ornament for the year and put it on her memory tree in January, which is angel theme. 

T. has been anxious for me to share a few more red-white-and-blue things with you all.  First is her betta fish, named "Firecracker", which she just bought with some birthday money:

T. also bought our dog Lucia a red-white-and-blue collar and leash.  (Lucia is a Labrador/terrier mix.):

T. and my husband seem to often be collecting things from the side of the road.  Recently there was a broken spring horse tossed in a pile on our street.  The horse was faded and worn out.  But T. thought they might could do something with it so they brought it home.  They painted it in "Lilly colors" and named it "Lily Spangle."  A fresh coat of paint can do wonders!

H. thought it was great fun to pull Lily Spangle around, like they were in a parade:


Saturday, June 23, 2012

LillyBear's Adventures in Chincoteague

Have you ever read Marguerite Henry's book Misty of Chincoteague?  Or heard about the annual round up, swim, and auction of the wild horses of Assateague (the island across from Chincoteague island? Would you like to find out more about Chincoteague, Virginia?  Then read on!

About a month or so after Lilly passed away, my step-mom offered to let us stay at the cottage she owns and rents out by the week on Chincoteague.  I accepted thinking it would be a good thing for our family.  We were blessed to go and stay for a week, from June 9-June 16.

We decided to take LillyBear with us.  Little did I know at that moment just how fun, and comforting, that would turn out to be.  Here's LillyBear strapped in and ready for the trip!

After about a 5.5 hour drive, LillyBear was excited when we finally pulled up in front of the little cottage, known as the Sea 'Scape.  (You can read website info. on the Sea 'Scape here or watch a short video.  If you make a reservation and go I promise you won't be disappointed!)  The cottage was built about 1950 and is full of personality:

LillyBear loved the view from the front porch. That is Assateague island, right across the Assateague Channel:

After unloading and making and eating dinner (on the porch!), we needed some exercise.  So we headed down the road to Memorial Park.  LillyBear loved the wooden play ship:

Then we walked over to the docks and area along the Assateague Channel.  The view was beautiful:

H. talked to LillyBear about how he could not wait to visit the Assateague lighthouse, which they could see across the channel:

On Sunday we visited the Union Baptist Church.  (LillyBear did not actually go inside):

The day was very hot and humid, so an afternoon at the ocean was wonderfully refreshing.  (Ocean access is on Assateague - it's less than a 10 minute drive from the cottage. There is a charge for going onto the island - we bought a one week pass.)  LillyBear was up for boogie boarding and then a sun bath.  (We teased her about sunbathing since we are too busy playing and swimming to do that):

It was raining Tuesday morning so we headed to the Herbert H. Bateman Education Center on Assateague.  It was full of interesting exhibits and short movies. (We watched one about the ponies of Assateague).  LillyBear showed us she loves to learn:

When we left the education center, we found that the rain had stopped.  So we decided to go see the lighthouse.  However the rainy weather meant the mosquitoes were out in insane numbers!  I don't recall EVER having seen such swarms of mosquitoes!  They were like clouds around us, in spite of all the bug spray we had on.  LillyBear was the only one of us not to get bites.  We started off on the path to the lighthouse at a fast walk but soon were RUNNING to get there.

We blasted into the entrance to the lighthouse thankful to be free of the mosquitoes and their awful buzzing noises.  After paying admission we began the climb up 175 steps to the top of the lighthouse.

T. was snapping pictures and H. was so excited he climbed the whole way himself. (He's 3 years old.) I was wondering if I would make it because when I'm pregnant stairs just leave me incredibly winded. But I climbed these just fine. They were, of course, circular and there were several landings to take a break on.  Finally we made it to the top!  A volunteer handed T. and H. both a sticker to show their accomplishment.  He wouldn't give LillyBear one until I explained that she represented our real Lilly, who was living in heaven.  He quickly gave us a sticker for her then!  She proudly wore it as I took her picture by the door which led to the outside balcony of the lighthouse.

The view out that door was beautiful!  And it was so windy I found myself not wanting to get too close to the rail.

That afternoon, we went to the Tom's Cove visitor center.  (On Assateague.)  This was a very fun hands on little center.  LillyBear watched as the kids and my husband picked up hermit crabs and horseshoe crabs from a large tank.  T. and H. even got to feed the horseshoe crabs which was quite interesting. 

There was also an area where you could pick up things and identify them:

Outside the visitor's center is a lovely boardwalk down to the sandy parking lot by the beach.  We saw a lot of red winged blackbirds, and a rabbit along the way.

On Wednesday we went to the Chincoteague Pony Centre and Gift Shoppe.  The ponies were descendants of the real Misty!

The Centre offers pony rides and has a nighttime horseshoe.  (We didn't do either of those activities.)  The Gift Shoppe was very large and had a lot of really nice, quality things.  We enjoyed browsing.  LillyBear and I liked this doll best so I took her picture to remember her:

Next we headed to Main Street and saw the statute of Misty.  Misty was surrounded by sticker bushes, much to LillyBear's disappointment.  She had wanted to sit on Misty's back:

Across the road is an old movie theatre, and when the Misty of Chincoteague movie was shown, the real Misty left her hoofprints in the cement:

Next we drove by the Beebee ranch, where Misty had lived part of her life. It is no longer open to the public. 

On the way back to the cottage for lunch, we stopped at the Chamber of Commerce.  We picked up some good information and got free stickers.  During the afternoon, we went to the beach.  It was quite windy though, so LillyBear elected to stay back at the cottage and relax.  (I so wish I had room for a church pew in our home!  Maybe in our next home.  M-J please save one for me!)

On Thursday we visited the Museum of Chincoteague Island.  We all really enjoyed the exhibits.  T. took part in a scavenger hunt which made it more interesting.  H. liked the lighthouse related things best.  (They have a Fresnel lens among the lighthouse goodies.)  T. liked seeing the real stuffed Misty and her foal Stormy.  (Misty is the lighter colored horse.)  LillyBear was excited for a chance to pose with them:

During the afternoon, we took a one hour narrated trolley ride around Chincoteague.  The island is not big (I think it is @ 7 miles long) but there was a lot of interesting things to hear about.  LillyBear is like the rest of us, and loves history:

Next was the Captain Timothy Hill house, the oldest house on Chincoteague.  (Circa 1800.)  Unfortunately it closed shortly before we arrived. But LillyBear and I peeked in the windows anyway.  It is furnished in period items inside and looks very interesting.

Continuing back down Main Street, we made a quick stop into the carnival grounds, where the pony auctions are held each July.  LillyBear posed by the famous horse statue by the entrance:

On Friday we browsed through several used bookstores.  I have always loved books and now that I have children, am always on the lookout for Good Books to use for homeschooling.  ("Twaddle Free" books as Charlotte Mason called them!)

During the afternoon, as we drove onto Assateague, we were THRILLED to finally be able to see the wild ponies close up, instead of just way in the distance! 

That evening, we drove the Wildlife Loop on Assateague. It is about 3 miles long, and opens to cars as 3:00 p.m.  (It's only open to walkers and bike riders before that.)  We saw all kinds of birds, but not much else, at the time we drove through.

Saturday it was time to pack up and drive home to North Carolina.  I did wonder if anyone had noticed a crazy lady going around taking pictures of a stuffed bear everywhere! 

LillyBear wanted one last look at the causeway as we left Chincoteague:

Thus concluded a really good trip!  I think we all needed it.  If you're wondering, we were not there during the pony round up and penning week.  And since this blog post turned out so long, I did not go into any more details here.  But it is something that T. and I went to several years ago, and if there is any interest from anyone reading this, just let me know and I can post some pictures from it.

One thing we commented on to each other about a lot on our trip was just how amazing God is in how many many creatures He created!  And what beauty surrounds us, if only we stop to really look.  Thank you God!  :)

Thursday, June 21, 2012

Meet Aimee - the artist of my Jesus and Lilly picture

Today I was so happy to meet the artist behind my favorite birthday present of all time - a pastel painting of Jesus holding Lilly.  Aimee came to our house today to take some pictures of the portrait, out in the sunshine.  She said that is how to get the best picture of one of these pastels.  She is then going to take the best photo and make copies for us.  She is also going to let me have the digital image. I have so many ideas for it!

It was such a blessing to hear Aimee speak about doing the portrait and how God guided her through it.  She said she spent a week immersed in Lilly - drawing her and studying her pictures on the blog and reading about her.  She said she felt she really got to know Lilly and me that way.  T. and I enjoyed sharing some of our Lilly memories and showing Aimee various Lilly things around the house.  (H. just wanted to know what kind of car she drove!)

You can see Aimee's website at: .  Click on "Portfolios of Work" and you will see many other amazing portraits Aimee has done, in pastel and charcoal. 

My husband knew Aimee because she used to teach art at the Christian school that he works at.  I will always be so thankful to him for contacting Aimee and having this present made for me!  I just can not express how much comfort the portrait gives me.

H. surprised me today by drawing his very first picture of Lilly, which he called "Grown up Lilly":

T. had let him draw on a scrapbook page.  She added the photos for him and did the writing.  He added the stickers after drawing Lilly.  I think "grown up Lilly" is the very first person H. has ever drawn.  Usually his drawings are of cars, dogs, or vacuum cleaners.

T. knows how to crochet a little, and the other day was able to figure out how to crochet a little bird for Lilly's memorial tree for this month:

I am so thankful for creative outlets!  Tonight another mom of a Trisomy 18 angel and I both shared with each other how theraputic it is to make things to send to others.  It is healing for ourselves, and lets other people know we're thinking of them. 

". . . remembering the words the Lord Jesus himself said: ‘It is more blessed to give than to receive.’ " - Acts 20:35