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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
Showing posts with label trisomy awareness. Show all posts
Showing posts with label trisomy awareness. Show all posts

Friday, March 8, 2024

March is Trisomy Awareness month

SOFT (Support Organization For Trisomy) (soft.org) is a group that has been educating and helping families with children diagnosed with Trisomy 18, 13 and related chromosomal disorders for over 40 years.  I found them so helpful during Lilly's life and I still get cards from them every year, remembering her.  The month of March is "Trisomy Awareness Month."  See soft.org for plenty of resources.

For the entire month of March, I will be donating, to SOFT, 90% of any royalties I earn for my book LillyBear Goes to Chincoteague.  


My book is available on Amazon.com.  It is a print-on-demand book and can be ordered from whatever country you live in.  


Of course feel free to just make a contribution to SOFT directly! 😉

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" 
and
"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 18, 2015

Smile! Today is Trisomy 18 Awareness Day

 

This is Trisomy Awareness Month.  Trisomy means "three" and March is the third month of the year.  Today is extra special to me because it is the 18th.  That means today is Trisomy 18 Awareness Day.  Trisomy 18 means that there are three copies of the 18th chromosome instead of the usual two.

Sometimes I feel weird/wrong for continuing this blog because it started as Lilly's blog.  The place where I could update friends, family, and other interested people with what was going on with her.  We simply couldn't keep up with all the inquiries!  But then it also became a sounding board for me to share with the world about Lilly's life and to show that about 10% of babies with Trisomy 18 can live to see their first birthday.  (And I know a number of other children that have T-18 that have lived way past their 1st birthday!)




Not only did I want to let people know what our specific prayer requests for Lilly were, but I wanted to document her life both for our family, and as a help for other families coming into the Trisomy 18 world.  Another thing that I wanted to share was that special needs children are not a burden to their families, but that we enjoyed them and they enjoyed us.




Over the past 4 years, I have gotten a number of emails from mothers who were pregnant with babies
that had been labeled with Trisomy 18.  Several of these mothers were struggling with whether or not to abort their babies.   Interestingly, these mothers all wanted to keep their babies, hoping ultrasound was wrong.  But they all had people in their lives who were pressuring them to abort their babies.  It was sometimes their husband, but usually it seemed to be outside family members.  In one woman's case, it was the physical therapist of one of her children!  (Why anyone feels they have the right to tell someone else their opinion about something like this is beyond me.)

All of the abortion pushers expressed concerns about what the Trisomy 18 baby would do to the family.  (If anyone was concerned about the baby itself, the moms writing me did not express that.)  So the moms wanted to know things like:  Did Lilly tear apart our family?  Were my other children damaged because of Lilly's life?  Did we resent Lilly?  Was it a relief when she died?  Would I make the same choice to have her?  Did she just take up too much of our time?  Etc.




I responded to these emails the same way that I hoped I came across in my blog posts.  We ALL LOVED Lilly!  No one in our family resented her.  Tabby and Hunter adored her and never complained about her.  She bonded us all together as we fought for her life.  We were proud of her.  No one resented the extra time she took.  We all loved to help her.  Lilly's life blessed us in many, often surprising! ways, and still continues to bless us.  We are all better people because of Lilly and we still thank God for her!



I could go on and on but I think I made my point.  These special children are not a burden - they are a blessing.  No matter how long or short their life is, it will change you.  Bless you.  They are worth the heartbreak when you lose them.




 Oh - and in spite of what many people out there seem to believe - these little "retarded" babies really do have feelings and can express love and delight.  Lilly could smile and laugh.  She responded to our voices.  She loved watching what everyone was doing.  She was curious about things.  She liked routine.  She loved her physical and occupational therapy sessions and working hard.  And she had very strong opinions about how much she hated being in hospitals.  :)



 I could go on and on about this topic, but I will spare you.  ;)  So today, for Trisomy 18 Awareness Day, I just want everyone to know - YES, THESE CHILDREN ARE WORTH IT!



Sunday, August 17, 2014

Megan Whitson Lee: "Song from the Ashes"

Siblings:  Exhaust Pipe & Sherlotta

We had a wonderful surprise today, when we got home from church!  Frank said "Isn't that Exhaust Pipe?!" And it was!  After being missing for 5 days, he was home!

We have no idea where he was.  His collar with tag was still on.  He showed no sign of injury.

But he was ravenous!  He downed 3 bowls of food in a flash.

The chickens have started running over to the porch when they hear the sound of dog food being poured in the metal bowls.  Sherlotta did a good job chasing chickens off the porch while Exhaust Pipe ate and ate and ate.

Sherlotta standing guard while Exhaust Pipe and his Mama, Dixie, eat (note the hens on the rails)
Happy dog news is the perfect segue into the subject of my post.  Books written by my dear, longtime friend, Megan Whitson Lee.  Megan loves dogs and she and her husband own two greyhounds.  :)

I met Megan in the early 1990s.  We were both working at the Virginia Employment Commission and attending George Mason University.  (She was a music major and my major was administration of justice.)  We found we had some unique things in common: a love of heavy metal music and Dracula.  We also liked Renaissance festivals and historical events.  Besides those things, Megan had a love for God which I did not have at the time.  I fondly credit her with being one of two people in my life, who's influence lead me to finally accept Christ.  (The other person was one of the survivors of the government's massacre of the Branch Davidians in Waco in 1993.  But that is another story.)

Megan and I liked to dress up and have historical themed dinners, followed by movies.  That was a lot of fun.  Here is Megan at our medieval themed dinner.  I remember we watched "Braveheart" after eating.  :)

Megan
Another dinner was a civil war meal, in which we watched "Gone with the Wind" afterwards:

Me (on the left) and Megan
After collage graduation, Megan left for London, England on a year long work permit.  Before she returned to the United States, I went and visited her and saw many wonderful placed in London, York, Bath, and in Edinburgh, Scotland.  Some photos of that trip are interspersed below.

Megan - Parliament and Big Ben in the background
In 2009, Megan published her first novel, All That is Right and Holy.  This book follows the lives of several people involved in sex trafficking - at different levels.  From pornography addicts up to sex slaves.  Though none of the people in the stories are real, they are based on real people and circumstances.  It's been about 5 years since I read this book and it continues to haunt me.  I especially can not think of the country of India without thinking of the way girls are sold - by their own parents or relatives - to be sex slaves.  My review on amazon.com sums up how I feel about it:

"I read this book several years ago and I still think about it at times and often find myself praying for those involved. The story was riveting, haunting, and educational. I learned a lot about the sex trade industry and how it is truly all around us. I learned about the types of people that get involved and why. Many heartbreaking stories out there. I was thankful this book was not overly graphic. I came away from it feeling I know how to better guard my own children from being accidentally exposed to and sucked into that nightmare world. I urge everyone to read this book and learn these things for themselves. For those already involved in some way - this book offers hope and shows the way out. This book is a story that needed to be written, and it needs to be read by many."

Megan won second place in the 2009 Christian Choice Books Awards for the novel.

me in Bath, England ( I LOVE all the old architecture in Europe)
Earlier this month, eLectio Publishing published Megan's second novel, Song from the Ashes.  Here is a summary from the back cover of the book:

"A retelling of Edith Wharton's classic novel The Age of Innocence, Song from the Ashes explores the struggle with contentment in marriage and the dilemma between striving for personal happiness versus acceptance of God's perfect plan."

I do not usually read Christian fiction, so honestly, I only know the stereotypes of it.  I like that Megan writes about "messy" Christians.  Meaning she writes about struggles that real Christians have.  Though not all Christians are being tormented in a love triangle, as this book's main character  Landon is, we all have our own struggles and temptations with sin.

William Wallace (Edinburgh) - "FREEDOM!!"
Landon, a Christian man that is steady, responsible, and does the right things, is newly engaged to April when he meets her fascinating cousin Ella, a failed country musician.  He struggles with his feelings for Ella, but chooses to honor his commitment to April, and marry her.

However, since Ella has a part of his heart, his marriage to April is not easy.  His struggles with his feelings for Ella and it makes him miserable.

Me in the classic red phone booth! I wonder if they even still exist (because of cell phone use)
Towards the end of the book, April gives birth to a baby girl named Carys.  ("Carys" is Welsh for "loved one.")  Carys has Trisomy 18.  This is the part of the book I started to cry and continued to cry until the end. I'm sure I would have cried reading about any baby with Trisomy 18, but Carys is special to me because she is based on our Lilly.  How I miss our sweet Lilly ...  And just like Lilly brought amazing blessings with her during her short life to us and others, Carys blesses those around her in the book and brings healing.

On a fun note, there is a girl named "Tabitha" in the book mentioned briefly (if you don't know, Tabby's real name is "Tabitha") and there is a pastor named "Frank."  There is also a little girl named "Lilly" who is mentioned twice.  She is like a little angelic being.  :)

I will always be grateful to Megan for including the Carys character in the book.  Not just because of her similarity to Lilly, but that she helps spread awareness of what Trisomy 18 is.  On the "Author's Note" pages in the back of the book, Megan briefly describes Trisomy 18 and cites my blog for Lilly.  :)

Megan by a sign for "The Ultimate Ghost and Torture Tour" in Edinburgh.  This tour was a nighttime walk through the catacombs under the city. We had a bizarre paranormal experience at one point.
As I mentioned in my last blog post, I read The Age of Innocence right before reading Song from the Ashes and it was really neat seeing the parallels.  Though I did like The Age of Innocence, I liked Megan's story better.  I really appreciated how Megan brought God into her story.  Wharton's book was not from a Christian perspective.  (If you are not a Christian and are reading this, please know that you do not need to be one in order to appreciate this book!)

Megan set her story in Kingsport, Tennessee, the town she grew up in.  In the week before her book's release, she did a series of blog posts about Kingsport.  They were so interesting, especially as I remembered them while reading this story.  Frank, Tabby, and I attended Megan's wedding, years ago, in Kingsport.  So it was neat when she wrote about places I was familiar with there.  Megan's blog, called "Life Before the Hereafter" is at:    http://meganwhitsonlee.blogspot.com .

Hampstead Heath - beautiful open countryside, right in London
So ... I guess you can tell ... I highly recommend Megan Whitson Lee's book, Song from the Ashes!  The book is available in both paperback and Kindle.

"I count him braver who overcomes his desires than him who conquers his enemies; for the hardest victory is over self." - Aristotle

"The heart is deceitful above all things and beyond cure.  Who can understand it?" - Jeremiah 17:9

Me at Trafalgar Square in London (goodness - the main thing that shows up are my white hightops! How 1990s ...)

Monday, March 17, 2014

Solomon's lead level, book giveaway reminder, and puppies

REMINDER ABOUT MY BOOK GIVEAWAY! In honor of Trisomy 18 day (Tuesday, March 18) and for Trisomy Awareness month, I am giving away a copy of the book "Audrey Bunny" by Angie Smith. (Angie has also written "I Will Carry You: The Sacred Dance of Grief and Joy" about her daughter Audrey, who had an "incompatible with life" diagnoses and lived 2.5 hours on this earth.) This is a very sweet children's book about a stuffed bunny, named Audrey, who fears that a mark on her body - an imperfection - has made her unworthy of love. She soon learns though, that that is untrue. And that everyone is special and wonderfully made by God.
You can enter by:
1) leave a comment to this post (with your contact info) OR
2) e-mail me at: LittleFirecrackerLilly @ gmail. com (remove spaces) OR
3) message me on Facebook
I will randomly select a winner on Wed., March 19.



Good luck!  :)

Today Solomon had a re-test to check his lead levels.  Praise God they have dropped!  His blood test came back under 3 which means great improvement.  He is no longer in a range where there is really much concern.  He will be tested once more at his 2 year check-up, in September. 

The government worker with the lead detection gun never did show up.  (Bureaucracy!)  So we don't know if something environmental was causing it.   But perhaps the combination of the detox I've been doing with Solomon, the fact that he no longer puts EVERYTHING in his mouth anymore, and God's mercy, is what dropped his lead level back into the more normal range.

What else would a boy push in a stroller but a dump truck!
Here is what I have been giving Solomon to work as a lead detox:  Vitamin C, multivitamin (I use Beeyoutiful's Superkids), cod liver oil (Green Pasture fermented), calcium (from Meadow Mountain Herbs) and iron (also from Meadow Mountain Herbs).  I was also prepared to bath him in bentonite clay (see article here from Bulk Herb Store).  Also, I washed his hands frequently throughout the day, gave him several snacks, and damp mopped our wood floors a bit more than usual.  (Those were suggestions I received in my educational packet from the government workers that visited us in January.)


"Because of the Lord’s great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness." - Lamentations 3:22-23

Today my favorite puppy Houdini was the first of the litter to leave home.  I was happy for Houdini but I sure miss the furry little guy and was surprised I wanted to cry after he left with his new family.  Bye Houdini!

Houdini


We just have two puppies needing good homes.  The first is Watsonia, a girl:

Watsonia
 The other is Bongle, a boy:

Bongle
Let us know if you are interested in either of these two cuties! 

Friday, March 14, 2014

Book giveaway for Trisomy 18 Awareness Day (March 18)

Lilly - 12 months old

Lilly, aka Little Firecracker, was one of only about 10% of babies with Trisomy 18 to live to celebrate her first birthday.  (And that is of the low number to survive birth and then make it past 2 months old.)  Trisomy 18 (and Trisomy 13) is unfortunately known as a "lethal condition."  Or, as some doctors put it, "incompatible with life."

When I was diagnosed as being pregnant with a baby with Trisomy 18 I thought "what is that?"  Like most people, I had never heard of Trisomy 18.  The only Trisomy I had heard of was Trisomy 21, Down Syndrome.  (Though at that time I didn't know it as "Trisomy 21.")

Trisomy 18 is a genetic condition meaning there are three copies of the 18th chromosome instead of the usual two.

"Trisomy" means three so that is why March, the third month of the year, has been adopted as Trisomy Awareness month.  The 18th is specifically Trisomy 18 Awareness Day.

Jordan

Little Jordan lived three days with Trisomy 18.   Her mama is working to raise Trisomy awareness with a fundraiser.  She calls it "Trisomy Tea" and seeks to raise awareness "one cup at a time."  For  $5.00 (plus postage), you can buy a "tea cup".  It is a paper "tea cup" card and has a package of tea inside.  Jordan's mama suggests:
Have you thought about what you can do with your Trisomy Tea Cups?
Have a tea party with your children,
Share them with the therapists working with your child,
Take some to the hospital/staff/doctors that helped deliver your baby!
The ideas are endless; also consider sharing recent research for them to review; I have a list of helpful websites included with the tea. Last year I took them and research to 2 NICUs in West Virginia to share with the doctors and staff




Here is the Trisomy Tea Facebook page with ordering information:  https://www.facebook.com/TrisomyTea       I love unique ideas like this!

Now for my book giveaway announcement!

Recently I read a book called Audrey Bunny by Angie Smith.  (Angie has also written I Will Carry You: The Sacred Dance of Grief and Joy about her daughter Audrey, who had an "incompatible with life" diagnoses and lived 2.5 hours on this earth.)  This is a very sweet children's book about a stuffed bunny, named Audrey, who fears that a mark on her body - an imperfection - has made her unworthy of love.  She soon learns though, that that is untrue.  And that everyone is special and wonderfully made by God. The illustrations in this book are just precious.  They are drawn by a young woman named Breezy Brookshire. (You can see her style in her Etsy shop here.)

Obviously I see the connection with this idea and my Lilly.


Lilly and Mama - July 2011 - photo credit Steve Rubin Photography
So ... I have one copy of this book to give away.  You can enter now through March 18 - Trisomy 18 Awareness Day.  I will randomly select a winner on March 19.

You can enter by:
1) leave a comment to this post (with your contact info) OR
2) e-mail me at:  LittleFirecrackerLilly  @ gmail. com   (remove spaces)  OR
3) message me on Facebook

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well." - Psalm 139:14

Wednesday, March 5, 2014

It's Trisomy Awareness Month (2014)

Lilly at 16 months

March is known as "Trisomy Awareness Month."  This is something I never even heard of before I had Lilly, so I hope to do my part to help raise awareness in some way.

First though, to read an excellent summary of Trisomy Awareness, please click over to this post on Jenny's blog:  http://jennychildress.blogspot.com/2014/03/trisomy-awareness-month-2014.html
Jenny is the mama of Julia, a little girl who had Trisomy 18 (like Lilly).  Julia blessed her family for a little over a year, before leaving this earth the day after Lilly did.

March 18 is the day this month that is focused on Trisomy 18.  I have a grand idea in my head of how I would like to spend a part of that day: a giant balloon release (with each balloon representing a child that had Trisomy 18) out on a big field, handing out informational brochures, and have someone from the local news station in attendance and filming.  Of course when that news footage aired, it would only be a 30 second sound bite and maybe brief clip on the news, but that would be OK! 

Now is this idea going to happen?  Sigh.  Not this year.  I just don't have it in me right now.

But I do plan to do a book giveaway on March 18, along with another little goodie or two.  I will do a post about that next week, with the details and how to enter.

I occasionally get e-mails from pregnant women who are struggling with whether or not to abort their baby who has been diagnosed with Trisomy 18.  Sometimes the woman wants to keep the baby but everyone around her is pressuring her to abort it.  Sometimes she just doesn't think she can deal with the baby.  I'm sure you know how I respond. 

No matter how long these children live, THEY ARE WORTH IT!!!  They will bless your life in countless ways.  You will have no regrets. 

Lilly - 4 days old
Lilly - 17 months old

These babies may be "defective" according to the world, but they truly are perfect in their own way.

"For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be." - Psalm 139: 13-16