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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 18, 2016

How we celebrated Lilly's July 4th birthday

I can't believe 2 weeks has already passed since Lilly's 6th birthday.  But if you've read my last few posts, you see we've been a bit occupied!  I do want to go back and do a "photo diary" of our day July 4th though, for our own memories.

We first went to Belhaven for the annual 4th of July parade.  While waiting, we walked down to the Pungo River:

Yes, Hunter brought a shaded pole motor along
 Solomon and Frank got to go inside this boat:

I took this picture on the bridge:

Tabby taking photos at an interesting angle:

Then we went into my sister-in-law's place, Gingerbread Bakery & O'Neal's Snackbar (website here and Facebook page here), and had some tasty treats and something to drink.  (FYI - this is THE BEST place to eat in that area!)

The parade starts with LOUD firetrucks.  I liked this old one:

Solomon and I liked the gorilla:

And Hunter liked this crazy solar powered mower thing:

After the parade, we drove down the road to the Pantego Academy Historical Museum (website here and Facebook page here) for a free hot dog lunch.  It is such a beautiful old school building with a wonderful museum inside.

 After eating, we explored the museum.  Solomon's favorite part was playing school and then getting "water" from the dipper:

Hunter spent a long time studying the old stove:

 Solomon posed with my mother-in-law.  I appreciated she was in costume while working at the museum:

Then the boys did some gardening work before we left (these are possible publicity photos for the museum):

That evening, we gathered with family for supper and cake for Lilly.  Solomon was super excited about Lilly's cake (when I bought it he kept shouting it was "beautiful!") and he got the honor of blowing out her 6 candles:

Next we headed to Washington, to the cemetery Lilly is buried at.  We had 6 birthday balloons for her and her Lilly-colored owl which I put at her grave for her birthday.  I tied one of her balloons to it then we let the other 5 sail up into the air and watched them float away.

Finally, we watched the town's fireworks, while sitting on a floating dock on the Pamilico River:

I love all the busyness of Lilly's birthday celebration.  It keeps me distracted.  It is SO MUCH easier of a day than her angelversary in December.  I treasure remembering the absolute triumph of leaving the hospital with her, on July 4, 2010, and against all odds, she was ALIVE. 

Friday, July 15, 2016

Home home home ... we love home

Just a quick post to say that Tabby was released from the hospital late yesterday afternoon.  Finally!  Because her stomach was still hurting some, she got a referral to a pediatric GI doctor.  But, we may not need to make that appointment.  As of today, her pains are gone and her stomach is only "very sore."  Huge improvement.  We will follow up with her pediatrician on Monday and see if she thinks we need to do anything more.

It was so nice to start getting back to normal today.  Even the goats seemed happy to see me this morning when I went out to milk them.

Here's a really neat picture I took of Tabby on the 4th of July, in Belhaven, N.C.

Thank you everyone for your prayers, good wishes, and support.  It's been an exhausting week and I pray there are NO MORE hospital visits for a very, very long time!

Tuesday, July 12, 2016

To the hospital, to the hospital, to the hospital, and still at the hospital

I am attempting to type this post on my little cell phone from the hospital.   It has truly been a home away from home for Tabby and I lately.  :(

I first brought Tabby here Sunday, July 3, at about 2:00 a.m.  She had excruciating abdominal pains and said she felt like she was being stabbed.  Emergency room doctors had an ultrasound done on her and found that she had a ruptured ovarian cyst.  Ouch!   She was given painkillers and sent home.   We got a few hours of sleep then headed east to my mother- in-laws to get ready for Lilly's birthday celebration.

Tabby was ok, but still had some soreness over the next few days.  Thursday we went to Wrightsville Beach for the day with my brother Patrick and his family.  After eating supper that evening, Tabby said her stomach hurt.

Friday it got worse.  Saturday it steadily got even worse and she cried she was being stabbed inside.  So that evening I brought her back to the emergency room.

She has another ultrasound, x rays, and a CAT scan.  No more ovarian issues were seen.  Her appendix looked good.  So did her gall bladder, etc etc.  The painkillers did not help and the morphine made her feel sick and loopy.  But we left since no problem was found and we figured the painkillers would kick in soon.  Got home about six a.m. Sunday and went to sleep.

About noon that same day, Tabby woke up and cried the pain was unbearable.   Soon she was writhing on the floor and gasping.  So back to the hospital we went.

Some of the tests were repeated but no changes.  They asked her so many questions.  She got painkillers again and they still didn't work.  On a scale of one to ten, ten being the highest,  her pain level was a ten.

So they admitted her and about midnight she was moved to the children's floor.

The next day a doctor looked at all of the images on her tests and then examined her noting where she felt the most pain.  His diagnosis:   constipation and a massive "back up."  Oh my.  Not what we were expecting but thankfully not something horrible.

So the fun treatments began Monday afternoon starting with an enema.   (I know.  Just the word can make you shudder. )  Then she was given a huge jug of juice with Miralax in it to drink.  And we waited.  And waited.

Tuesday for a late breakfast she drank another jug of miralax.   Then another late this afternoon.

And it now it's Tuesday night and still not much has happened and she is still in a lot of pain.

So just when will this party end?  It is feeling like it never will and we will be here forever!   :(

Smile for the camera girl. ...,

Prayers would be very much appreciated!

Tabby just quipped that at the rate she's going this year I should rename this blog "Pray for Tabby."  We both snickered but hope that won't hold true.

Monday, July 4, 2016

Happy 6th birthday, my Lilly girl!

Dear Lilly,

I can't believe you would be celebrating your 6th birthday with us if you were still on earth.  Wow!  Six years old!  I wonder a lot what you would be like. There's not one day that goes by that I do not think about you.  Your brothers wonder if you would like playing with them.  Your sister wishes she could still fix your hair and hold you.  Your daddy misses his girl very much.  No matter how long you are gone, there's still a big hole in our family where you belong.

We will be celebrating your birthday today in what has become our tradition.  Parade, cake, balloons, fireworks.  There is much comfort in traditions we have learned.  Solomon is old enough to remember a little of it from last year and he is very very excited about celebrating this year.  We picked out your cake at the store and he kept shouting how "beautiful" it was!  And he's already claimed blowing out your candles.  He helped me pick out 6 birthday balloons for you.  (Hunter was disappointed there were no balloons that said "Feliz Cumpleanos" on them like we ended up with last year.) 

All the celebrating our country does today - all the red, white, and blue - all the reminders of our freedom and independence.  And all the many many reminders of you.  I'm so glad that God had you be born on the 4th of July!  You were two and a half weeks late but it turned out to be just perfect.  God never makes mistakes and He made you just perfect the way you were.

I love you forever and ever my sweet girl and will see you again one day!

Love always,

The day Lilly was born, July 4, 2010, followed by lots of Lilly-colored outfits in her 1st birthday month, July 2011:

July 4, 2010

Saturday, July 2, 2016

Guest Post: 3 Tips to Help You Express Sympathy in the Loss of a Loved One

Last month I wrote a post about "How to Express Your Condolences" in which I shared a link to the Obituary Help website.  Today's guest post was written by Suzie Kolber, a writer at the Obituary Help website.  Read on for Suzie's 3 very good tips to help you express sympathy in the loss of a loved one.

One of the most difficult things for a person to do is respond to someone who has lost a family member, friend, co-worker or other significant someone. It can be an awkward time as you struggle for the right words to say. Here are three tips to make this situation easier for both you and the person you want to comfort.

Tip 1: Be Sincere
One of the most common mistakes you can make is to be insincere. It’s not intentional, but it happens when you say something you don’t mean. “I understand how you feel” is a prime example of this. If you’ve never lost a spouse, you can’t understand what it feels like for someone else to lose one.
Even if you have been through a similar situation, you can’t pretend to know exactly how the other person feels. Everyone is unique and so are their feelings and actions. It’s much better to say “I don’t know how you feel, but I’m here for you” when you express condolences.

Tip 2: Don’t Advise
To be helpful, some people will tell you how to deal with grief. They may say you need to keep busy or talk about the person (or not talk about them), but this is not the correct way to express sympathy for someone. Everyone deals with grief in their own way, and you can’t determine what is best for someone else.

If you want to be helpful, form your “advice” in the form of an offer. You can say something like “Give me a call if you need to talk” or “Let me know if you’d like to go for a walk sometime.” This phrasing puts the suggestion in their mind without telling them how they should handle their situation.

Tip 3: Silence is Golden
When someone has lost a loved one, others often feel they must say something. They look for inspirational words that will make the situation better. Unfortunately, you don’t have a magic wand to make the pain disappear, and in many cases your words can wound more. Instead, feel free to say nothing.

Sometimes the greatest way you can express condolences to someone suffering from the death of a loved one is by saying nothing. You can just sit with the person, give them a hug or hold their hand. No words are necessary in times like these. In fact, the person may not feel like talking or they may not want to come up with an appropriate response. The quiet can have the most healing power.
Many times, a person will avoid talking to someone who has suffered a great loss because they don’t know what to say. This is not the right response because that person needs to feel your support. You don’t have to be eloquent in your sympathy as long as you are sincere. You don’t even need words at all to convey your feelings. Just your presence can be more than enough to let them know you care.

Suzie Kolber is a writer at . The site is a complete guide for someone seeking help for writing words of condolences, sympathy messages, condolence letters and funeral planning resources.