caption - title

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, December 27, 2012

Mommy: Please Don't Cry

Mommy, Please Don't Cry: There Are No Tears in Heaven

This is the title to a beautiful book by Linda DeYmaz that I received recently from Hannah's mom.  The artwork in the book, by Laurie Snow Hein, is gorgeous.  The pictures and words make me smile through my tears every time I open the book.  (Well actually I don't have to open the book - that happens when I just read the title.)

The author wrote the book in memory of her little girl, Alexandra, "who went to be with Jesus on Easter morning, 1995."  The book is dedicated to "mothers everywhere who have experienced the deep sorrow of losing a child."

A simple story flows on the beautiful pages and is written from a child's point of view.  A child that made the journey to heaven and wants to assure their mommy that they are happy and well. Also scattered through the book some scriptures that are comforting.

"He will wipe every tear from their eyes.  There will be no more death or mourning or crying or pain, for the old order of things has passed away." - Revelation 21:4

I was going to share my favorite page but I can't decide which one it is!  So I'll just share the last page of the story.  It has a beautiful little girl on it holding flowers and says "Mommy, please don't cry ... I'll wait right here for you."

What a message of hope!

The last section of the book has several journaling pages.  The topics at the top of the pages: 

- "My thoughts and prayers for you:"
- "These were my dreams for you:"
- "Because of you I have learned so much:"

The final page in the book has a dedication page for the reader to write in their child's name.  "In Memory of ____________ You went to Heaven On ____________"

My little review of this book can not do it justice.  But I know this is one book that I will be giving as a gift in the future to moms who's children are called home early.

Tuesday, December 25, 2012

Merry Christmas from Heaven!

caption on Lilly ornament:

I love you all dearly, now don't shed a tear, cause I'm spending my Christmas with Jesus this year

"Merry Christmas from Heaven" by John Wm. Mooney, Jr.

I still hear the songs,
I still see the lights
I still feel your love on cold wintery nights

I still share your hopes and all of your cares
I'll even remind you to please say your prayers

I just want to tell you, you still make me proud
You stand head and shoulders above all the crowd

Keep trying each moment, to stay in His grace
I came here before you to help set your place

You don't have to be perfect all of the time
He forgives you the slip, if you continue the climb

To my family and friends, 
Please be thankful today
I'm still close beside you,
In a new special way

I love you all dearly,
Now don't shed a tear
Cause I'm spending my
Christmas with Jesus this year.

Sweet and sad, isn't it?  So now for some smiles:

Clive was hiding in Lilly's angel stocking this morning:

Merry Christmas from our elf and LillyBear:

Solomon says, "Merry Christmas in heaven, big sister Lilly, you couldn't be in a better place!"

Sunday, December 23, 2012

Today is Christmas Adam

We have a joke in my family - we call the "eve" of an "eve" an "adam."  So, since tomorrow is Christmas Eve, we call today "Christmas Adam."  (playing off of the first people God created - Adam and Eve)

LillyBear is enjoying the day:

I like traditions.  I used to have a lot more Christmas traditions than I do now.  Having Lilly gave me a different - and better I think - perspective on a lot of things.  But one tradition that I still really enjoy is our annual trek to the Jordan Lake Christmas Tree Farm.  Lilly went with us for two years.  And this year we were thankful to take Solomon with us.  We cut our tree a couple weeks ago.  I got out Lilly's Santa hat for Solomon to wear.

I thought she would like knowing her baby brother was wearing it.

We all enjoyed showing Solomon around the tree farm:

Solomon seemed to enjoy the hayride almost as much as Hunter.  (Hunter loves tractors):

The family that runs the Christmas Tree farm also has a gift shop on their property.  We always enjoy looking at what they're selling, though I've only bought something once.  Solomon liked the big red Santa:

But he did NOT like the green Santa:

Finally, one of our favorite pictures of Lilly at the Christmas tree farm is of her being a "tree topper":

So we decided that we needed to have a picture of Solomon being a "tree topper" too:

Traditions.  They can bring joy.  They can bring heartache when there are changes.  But we all seem to need some.

So merry Christmas Adam!

Saturday, December 22, 2012

Lilly's snowflake memorial tree

Did you know that every single snowflake is different? Think about it.  Isn't that mind boggling?  Most snowflakes, or crystals, have six branches though some have three.  Wilson Bentley, better known as "Snowflake Bentley", lived from 1865 to 1931.  He dedicated his life to studying snowflakes.  Fascinated by the snow from the time he was a young boy, his world changed when his mother gave him an old microscope.  After observing snow crystals up close, he noted:

"I found that snowflakes were masterpieces of design.  No one design was ever repeated.  When a snowflake melted . . . just that much beauty was gone, without leaving any record behind." (quote from Snowflake Bentley by Jacqueline Briggs Martin)

As an example, look at the below four snowflakes.  These are all printouts of actual pictures of snowflakes taken by Snowflake Bentley.  (He had a special camera with a microscope at the end).

Amazing isn't it?  Especially with you think about this only being four out of a countless number of snowflakes!  Each are based on that hexagonal pattern but each are unique.

The Trisomy 13/18 children remind me of snowflakes.  Each are similar but yet each are unique.

This month Lilly's memorial tree is covered with 127 snowflakes.  Each one, like the above, is an actual snowflake picture.  Each one has the name of a Trisomy angel child and the date they passed away.

I had already planned to make a snowflake tree with Lilly's Trisomy friends for this month.  But my idea ended up taking a bit of a different twist for this year.  I joined a group of moms in a Facebook project called Our Angels Light up the World for Christmas.  We shared the name and date of our angel children and a grandma of a T-18 angel compiled them into a list for us.  We each said we would honor each other's angel children on our tree.

Lilly's tree is completely covered on all sides by these 127 snowflake ornaments that I made:

It is beautiful and sobering.  Especially when I think about all the other angel children I know who are not represented on the tree.  (I just stuck to the official list this year.)

I got my snowflake clipart pictures from Dover's Bentley's Snowflakes book.  It has over 500 of the snowflake images in it in the book and on CD.

Hunter and I have thoroughly enjoyed Jacqueline Briggs Martin's book Snowflake Bentley and have read it repeatedly.  It is a book for children but full of facts and we learned so much.

This quote from the book explains how snowflakes are made and why Snowflake Bentley never found two alike:

"each snowflake begins as a speck, much too tiny to be seen.  Little bits--molecules--of water attach to the speck to form its branches.  As the crystal grows, the branches come together and trap small quantities of air.  Many things affect the way these crystal branches grow.  A little more cold, a bit less wind, or a bit more moisture will mean different shaped branches." 

Wow!  God is so creative how He designed snowflake production!

The last time we played in the snow with Lilly, we had no idea just how amazing it was!  (picture from 2010)

Wednesday, December 19, 2012

Clive: Our "Elf on the Shelf"

Just a quick "for fun" post today.  :)  Last December we got an Elf on the Shelf book and elf doll set.  I've forgotten a lot about the story in the book, but we had a lot of fun playing hide and seek with the elf doll.  Each night before bed I would hide our elf in a different location in the house.  Tabby and Hunter loved to look for him the next morning.  We named our elf "Clive."

This December we're having fun doing this again.  Can you spot Clive in this photo?

That's right - he's hanging out with Lilly's crazy sock monkey. 

Today Clive was reading Hunter's favorite Christmas book Are you Grumpy Santa?:

Does your family have fun with an elf on the shelf?  If so - what did you name your elf? 

Saturday, December 15, 2012

Day 17: One year ago today

This is is my seventeenth and final post in a series of seventeen.  17 days of remembering Lilly's 17 months of life.  Today is her one year angelversary.

The most horrific moment of my life was one year ago today, when I went to wake Lilly from her afternoon nap and found her dead.  (See this link for details.)  How she looked and felt is forever burned into my mind.  Yet I am so glad it was me that found her.  Driving home from a visit to Lilly's grave today, we talked about how many amazing details of Lilly's life and death that God worked out.  It really is incredible. 

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." - Romans 8:28

 Frank and Hunter cleaned Lilly's gravestone, and the stone of Wendi, Frank's sister that is buried right beside Lilly:

We gave Lilly her Christmas present - a Lilly colored Christmas tree!  

Solomon was quite fussy at the graveside today.  Maybe it was good - it kept me distracted.

We all shared some of Lilly's special chocolate.  

We miss you sweet Lilly girl, but know you are in a perfect place.  We echo the verse on Lilly's gravestone:

[King David speaking after his baby died] "I will go to him, but he will not return to me.” - 2 Samuel 12:23 

Friday, December 14, 2012

Day 16: Support

This is is my sixteenth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

 "The Big Day" is tomorrow.  One year since Lilly was taken from our arms.  When I started posting this series I was dreading the 15th.  I felt really really nervous about it. Yes, even scared.

But now that we're almost there, I actually feel mostly at peace.  Sad.  But at peace.

That means people are praying.  Many people must be praying for us.

Thank you.

 Thank you to everyone who has given us such love and support ever since we learned that there might be something wrong with Lilly.  Thank you to all the people who took the time to learn about Lilly.  Thank you to everyone that has read/still reads this blog.  Thank you to our families.  I feel we drew closer because of Lilly.  Thank you to our friends - both old and new - we are so grateful for you.  Thank you to the many many strangers that have spoken words of kindness to us.  Thank you to Lilly's doctors that grew to love her as they cared for her.

A special thank you to the families in the "Trisomy" world.  We have a deep bond with so many of these families now.  Both angel families and families who still have living Trisomy children.  There are so many of you I have grown to love and appreciate.  I am thankful for the way we bond together.  The way we're there when we need each other.  The way we truly understand each other like no one else can.

I am thankful for my husband Frank and our children, Tabby, Hunter, and Solomon.  We all loved Lilly and still love her.  We are there for each other and smile and cry together.

"We always thank God for all of you and continually mention you in our prayers.”  - 1 Thessalonians 1:2

I am thankful, most of all, to my Lord for creating Lilly just as she was, and entrusting her to us for 17 months. 

I love what this ornament says, that we received yesterday from the B. family in memory of Lilly - "Fearfully & Wonderfully made - Lillian Eva Hollowell - 7.4.2010-12.15.12 - Now in the arms of Jesus"

And while Lilly is safe in Jesus's arms, I am grateful to God for sending us our rainbow baby to hold and care for.  He has helped to ease the ache in our arms.  Solomon will be 3 months old tomorrow, on big sister Lilly's angelversary.

Thursday, December 13, 2012

Day 15: Our angel

This is is my fifteenth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

"Don't need an angel on top of my tree, I already have one in heaven looking down at me."

This quote is making the rounds among the Trisomy angel parents.  I thought it was a wonderfully sweet quote to know as we rapidly approach Lilly's angelversary this coming Saturday.  Add to that, the Victorian tree topper angel I have had since I was in my teens has officially stopped working this year.  Our kids wanted a star on top instead of my broken angel topper.

Then I saw a picture of Caleb's family tree.  (Caleb lived 2 years with Trisomy 18 and became an angel last year.)  Caleb's dad put their angel boy right at the top:

I thought that was such a wonderful idea that I had to add Lilly to our tree.  She's actually dressed in an angel costume:

"For he will command his angels concerning you to guard you in all your ways;" - Psalm 91:11

Wednesday, December 12, 2012

Day 14: A Lilly lesson

This is is my fourteenth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

 I LOVE, and continue to be amazed, at how many lives Lilly has touched.  Many people in the world would have seen her as a "drain on society."  But almost everyone who came to know her a little,  found things about her that inspired them or touched them in some way. 

Lilly was, of course, a huge influence on my own life.  She changed me.  She made me see life differently.  She made me better.  To see and appreciate all the "little things."  I continue to thank God for every one of the 529 days we had her.

Lilly inspired me to attempt to grow by learning to reach out to others that are hurting.  All that energy and giving I was channeling into her, I am now trying to use some to bless others.  To remember and honor Lilly.  It is my hope that people will see Jesus (and Lilly) in me, so that they might come to know Him more deeply and fully.  He has become more real to me by teaching me to serve others.  Too often, in the past, I have let opportunities to serve slip away.  Lord willing, and for His glory, Lilly's life can inspire us all in this fashion.

One example: right now I am continuing to work on a "Lilly Memorial Project" for angel parents.  (above photo)  I am committed to donating 17 boxes to angel parents at a local hospital.  Lord willing that project will be wrapped up and donated before the end of the year.  (I'll share more details about the box contents later.)

"[God] 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 1:4

Tuesday, December 11, 2012

Day 13: Scents and colors

This is is my thirteenth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Scents.  We all have certain smells that remind us of certain people or things.  I had not really thought about that with Lilly until after Solomon was born.  Then I realized there were a couple scents that did remind me of Lilly.  After I washed Solomon's wool diaper cover in the same baby powder scented "Woolie Wash" that I used for Lilly's wool diaper cover, memories of getting her ready for bedtime came flooding back.

Another scent  is Jojoba oil, which I used to massage Lilly with.  And another is Eucalyptus lemon essential oil, especially mixed with almond oil.  I used to rub this into Lilly's cradle cap and then after a few minutes, rub those areas with a toothbrush.  I'm now using that on Solomon during his baths.

Colors.  It is absolutely delightful to be able to associate red-white-and-blue with Lilly, since she was born on the 4th of July.  Whenever any of us see something in those colors we automatically now think "Lilly colored."

Memory idea:  I've met some other mothers in the Trisomy world that associate their child's birthstone with their angel children.  One mom told me her angel daughter's stone is green.  She loves green because it makes her think of her daughter and has everything from storage boxes to shoes in green.

"For we are to God the pleasing aroma of Christ . . . ." - 2 Corinthians 2:15a

I was very saddened to read this morning at Annabel Villadiego received her angel wings yesterday.  She had Trisomy 18 and was about 3.5 years old.  Annabel's mom was encouraging to me and answered a number of my Trisomy 18 related questions when I found Annabel's blog during Lilly's first hospitalization.

Monday, December 10, 2012

Day 12: Medical equipment

This is is my twelfth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

I grew up in a healthy family and the most "advanced medical equipment" that I had any experience with was allergy shots when I was younger.  So when Lilly came along, with all her special needs, I had a crash course on learning about an array of medical equipment and how to use it for Lilly.  I still am amazed at how many medical things that Frank, Tabby, and I learned during her life.  Even Hunter knew the procedure for cleaning Lilly's feeding pump and how to turn on and off her equipment.  Though much of this equipment was rather foreign to us at first, we learned that it is all very common in the lives of those with Trisomy 18.

When Lilly was 2 months old, she was losing weight because she did not have the strength to eat enough, due to her heart.  So a nasogastric tube (NG tube) was inserted into her nose and down into her stomach.  It was hooked to a Kangaroo Joey feeding pump and that was how she got her milk.  I had to insert a new NG tube each week into Lilly.  I'm not sure which if us hated that procedure more!

This is Lilly's feeding pump with bag of milk.  Tubing ran from it and attached to the outside end of her NG tube.  The pump was hooked to a pole on wheels.  We had a little backpack to put the pump and milk in when we went out.  Lilly was on "continuous feed" for a long time.  That meant milk went slowly into her little tummy all day and night long.


When Lilly was 10 months old, she had had enough of the NG tube.  (She would pull it out at times.)  We had been holding off on gastronomy tube (g-tube) surgery hoping that she would learn to eat by mouth.  But she had forgotten her suck instinct, and only liked coconut oil in her mouth.  I finally gave up pushing for that at that time.  So she had surgery to insert a g-tube into her stomach.  She liked that sooooo much more.  No itching tape on her face or annoying tube down her nose and throat.

Hunter was so fascinated with the Kangaroo Joey feeding pump, he made a toy one for his stuffed dog:

Most babies with Trisomy 18 clench their hands into fists.  Little hand splints that help train them to hold their hands open more are not uncommon.  Here is Lilly modeling hers, which she wore only at night:

For part of her life, Lilly was on oxygen at night, or when she was very sick.  So we learned about cannulas (the part that hooks under her nose) and oxygen condensers (the big hot, noisy machine that pushes the oxygen through tubing and in and out of the cannula into the nose).  After much searching, I finally found a tape that didn't tear her skin, to hold it onto her face.

Whenever Lilly began to struggle with any type of respiratory illness, I started her on nebulizer treatments.  Many people with asthmatic children are familiar with these machines, but I had no experience with one.  Lilly was not impressed with them, but they definitely helped!  (They blow a mist of medicine and the person with the mask on breathes it in to open the breathing passages and lungs.)

One more "essential" piece of equipment was a pulse oximeter (pulse ox).  When Lilly was hooked up to it (by her toe) we could see what her oxygen saturation level was and also her heart rate.  We used it when she was sick as a monitor because if the levels got too bad - we had to take her to the emergency room.  This machine was an extremely helpful yet also very nerve wracking as it could give false readings if Lilly kicked her foot too much or moved a lot.  We rented one but then finally ended up buying one.

That was another piece of equipment that Hunter liked so much that he made one for his dog Sam:

So the above was our "home medical equipment."  Of course hospitals have a ton more - Lilly was hospitalized several times - nearly dying each time.  I was always amazed at the number of machines they would check her with or hook her up to there.

Lilly found hospitals and equipment rather annoying, even though they helped her so much.  But most of the time she really was a happy and content little girl:

"And I will pray the Father, and He will give you another Helper [Holy Spirit], that He may abide with you forever,. . ." - John 14:16