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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, December 29, 2015

Solomon's surgery

Solomon and I left home in the wee hours this morning and arrived at Rex Hospital at 5:30 a.m.  He was fascinated how long it stayed dark in the mornings!  (He usually doesn't wake up until after 7:00.)  Today was the day he was scheduled to have the cyst on his cheek removed.

There was lots of checking in and waiting in different locations in the hospital:

Solomon and Lammy (confiscated from Tabby) in the 2nd waiting area
After about an hour it was time to go to pre-op.  The nurse asked lots of questions and then gave Solomon a most fashionable hospital outfit to wear:

super sporty socks
double ID bracelets - I got to wear one too
The nurse brought him a blanket that had been warmed - he loved it!:

Solomon and I had a lot of fun talking each other while we waited.  It occurred to me that that was something that we rarely had - extended and uninterrupted talk time!  He asked some questions about Lilly at the hospital.

 The anaesthesiologist was concerned about how Solomon would react when they took him away from me so she gave him some sort of relaxing medicine to drink.  He got a bit silly from it.  Another nurse then pushed Solomon on his hospital bed with wheels to the surgery area.  He thought a bed with wheels was pretty interesting!  I got to walk with them and then stay until time for surgery.  They were very punctual and took him at 7:15 - right when they said they would.

Surgery took about an hour or so, and then the surgeon came to talk to me.  He said that when he cut in to remove Solomon's cyst, he found that there was a second one starting to grow, below the first.  So he removed that too.  (Pathology is testing them to be sure there was nothing malignant.)  Because he had to make a bigger incision than planned, he used regular stitches to sew up Solomon's cheek.  He will have the stitches removed on Monday.

Apparently when Solomon woke up, he started asking for me.  A nurse came to get me as soon as they thought it was OK to bring me back to him.  Another nurse was standing and holding him and he was so groggy but his expression was "Who in the world are you and why are you holding me?"  They had me climb right up on his bed and then handed him to me.  Awwww ... he was extra snuggly. 

Then an older nurse pushed us to another department.  She was super fast!  I felt like we were flying down the hallways on that bed with wheels.  Solomon's cuteness brought all sorts of smiles and waves to him from people walking by.

Then he got a little time to recover:

A couple nurses complimented him on being so good during the whole process.  One said he was the best behaved 3 year old they had ever had in there.  (Score!  That was a "mommy moment" for sure!)  Another said if all little kids acted like Solomon, then she would be happy to work in pediatrics.  (I guess most kids are probably really scared while there.  Solomon was some - but he is like me - and holds in his emotions pretty well.)

Then it was time to have a small snack, get dressed, and then leave the hospital!  We got rolled out in a wheel chair.  That was a bit weird to me but they insisted I sit in it and hold him.  We drove out of the hospital parking lot at 10:00!

The inflated glove was a turkey - Solomon thought it was so neat
He fell asleep on the drive home and then napped for a couple hours.  His face was a bit sore when he ate and he was slower and wanted to be held more than usual.  But I think his recovery is going nicely.

Thank you so much, all of you, that prayed for him!

Saturday, December 26, 2015

Wonderful toy trains in Belhaven, NC

We finally made it to Lilly's grave earlier this week and gave her her Lilly-colored Christmas tree. It will need a fresh coat of white spray paint for next year:

On the way we saw Tow Mater (Cars movie) parked by some huge chickens!

The next day, after a most satisfying meal at Gingerbread Bakery (in Belhaven, NC) we saw that a storefront across the road that had a sign "Toy Trains of Belhaven" and decided to check it out:

Then we walked in to 300 square feet of wonderful trains!  Wow!!!!!

the man in the plaid shirt was running the train display - he knew so much about trains

Tabby doing the "required" hand signs required of today's teenagers posing for pictures
I really liked the wind-up trains from the 1930s
After we watched the trains a long time, Solomon was ready to go outside, so we left Frank and Hunter inside.  Tabby borrowed my camera and took a bunch of pictures.  Here are a few:

"I gotta secret, Mama!"
"This is MY mirror!" (this dog reminded us of our dog Dixie that died almost a year ago)
I told Tabby she needs to get back to doing portraits of people:

Hunter with his mind full of fascinating toy train studying
"Curiosity is natural to the soul of man and interesting objects have a powerful influence on our affections." - Daniel Boone

Sunday, December 20, 2015

The Eye of Tabby - photography for the week of December 20

Tabby's latest!  I continue to be amazed at the color she can get from her oldish camera.

"Multiply in the sky"

Tuesday, December 15, 2015

The ocean of grief

"Grief is like the ocean; it comes on waves ebbing and flowing.  Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim." - Vicki Harrison

I received the above quote in a recent card from the SOFT Bereavement Committee.   I just keep thinking about how true that quote is.

Tabby found this picture of Lilly this morning, reminding me how cute she was!
Today marks 4 years since Lilly passed away.  I'm in tumultuous waves.  I'm sitting here typing and feeling like I can barely breathe.  My whole body aches.  My inside is so tense even my teeth ache.  My mind is working so hard to try and keep away the images of Lilly when I found her dead and focus instead on how good her day was until then.  I wish I could just have a good cry because maybe I would feel better.  But my tears don't work properly. 

But soon - I'll be ok again and breathing normally and remembering Lilly with a smile.  The water will be calm again.

There's just something about "The Angelversary."  It's harder in a different way than the other days, including Lilly's birthday.  I dread it.  The farther we get into December the more I dread and even fear it.  Then it is here.  And, usually reflecting on the day after it passes, it's not as bad as I fear it will be.

Because we didn't go to her grave today, as we had in the past, I decided the boys and I would do a little donation project in Lilly's name.  Since it is Lilly's 4th Angelversary, we put together 4 "health kits" to donate to MAMA Project.  (A group that works with the poor in Honduras.) 

Yesterday we sewed Lilly-colored bags to put the things in.  The boys both helped with the sewing machine - Hunter handled the foot pedal and Solomon the presser foot while I guided the material:

The boys were so fascinated how the drawstring bags turned out that they begged me to sew them some.  Honestly I was a little irritated because I didn't want to cut fabric and sew any more bags.  But they were so very excited - and thankful for their bags - that it was worth it.

My mom sent me some money for my "Lilly Memorial Fund" and I used that today to buy the items needed for the health kits.  When we got home, Hunter divided everything up and then stuffed each bag:

I'll mail those off this week, along with a nice collection of small stuffed animals that each my kids gave up. 

I made a mistake at the store this morning.  I decided it would be fun to combine the boys Christmas shopping for other family members with our shopping for the donation items.  Never again!  The greed of getting and wanting things for Christmas quickly overpowered the sweetness of buying things for others in Lilly's name.

When we got home, I found a flower delivery from my dad and step-mom.  I look forward to all the beautiful lilies opening soon:

Last week I received this sweet framed picture of Lilly - embellished with lilies! - from the mom of a young woman that lived 19 years (!!) with Trisomy 18:

I smile every time I walk by the picture.

A.K., a co-worker of Frank, sent me this cute Lilly-colored angel potholder:

She's always been so thoughtful to consistently remember us and Lilly.

When I opened my inbox this morning, I had a sweet e-mail from my friend H.B. who wanted me to know she was thinking of Lilly and I.

As I reflect on these things - the kindness and generosity of others - it makes me feel better.  It really does.  That coupled with writing this post.  (Writing has always been incredibly therapeutic for me.)  I am even breathing easier now.  Thank you God!

"He has carried our sorrows." - Isaiah 53:4

Solomon added some humor to my day - running around wrapped in a Cars sheet that Tabby made him when he was a baby:

For Lilly's angel ornament this year, I got her the soft pink angel bunny - in the top right of her tree (angel theme, of course, this month):

"The Lord is close to the brokenhearted ..." - Psalm 34:18

My very last picture I took of Lilly - the day before she died:

sweet sisters
Tonight we will have Angel food with Cool Whip and strawberries and blueberries (gotta make the topping red/white/blue!).  I don't want to celebrate Lilly's death.  But I will celebrate her life.

See you again one day, my Lilly!