To my dear Lilly girl

To my dearest Lilly,

Your brothers and I were talking at dinner tonight - wondering whether or not you ever get to peek down on us on earth.  If you do, then you know why I didn't write to you last Thursday.  On your 5th "angelversary."  

I'm not going to mislead you Lilly.  This year has been hard.  REALLY hard.  Hunter says it's been our worst year since you died.  Maybe you know what's going on.  But if not, I don't want to tell you and give you sadness because remember - "NO tears in heaven!"  It will be OK though.  I have the two most important things in life:  Jesus and Hope.

Last Monday I was coming home from an evening appointment and the alternator in the little old car I was driving died.  It was so dark outside but thankfully I finally made it home safely.  When I got home I found that my 5 month old laptop had died.  Your Uncle Patrick looked at it for me but there wasn't a quick fix.  And your sister had 6 appointments last week so I didn't have time to follow up on warranty stuff yet.  And that is why I didn't blog on your Angelversary.  

Here I am now though.  I gave in and bought another laptop - at a fantastic price.  Figure the way my luck runs with computers, it's great to have backup.

It was a bit weird in a way, that December 15 was on a Thursday this year.  Just like 2011 - the year you died.  This was the first time and well, it just was sort of unsettling.  I will always remember starting to pick you up from your nap that evening, and finding you dead.  Something so horrific for me yet such a blessing for you.  How can something be so contradictory?  

Sister hugs - last time I took pictures of you alive

And I am thankful, that most of the time, I only have good memories of you.  Of your smile, of how you loved to talk to us - and to ceiling fans!  Of your curiosity whenever we went anywhere.  Of how you liked to watch Tabby and Hunter.  Of how much you loved working hard in your therapy sessions. Of how you liked chocolate!  And playing with dried beans.  Of the time when you pushed and scooted across the floor.  Of how you were almost able to sit up on your own.  Of how, on the day you died, you had such a good day!

The boys and I were talking about a bunch of the pictures on your photo collage tonight at dinner.  It's the one I made for your viewing and funeral.  I love that we have it in the dining room and we can look at it.  Solomon is fascinated with hearing about you and likes to ask questions about you.  Hunter was pointing out all the photos he was in with you.  Lilly - he still likes machines!  Remember how fascinated he was by all your medical equipment?  He was only 2 and 3 years old then but he understood how to run them!

This just made Hunter and I laugh - here he is with Sam hooked up to a pulse ox that looked similar to yours!

On the 15th your siblings and I went out together.  Because of Tabby's health situation I didn't want to go to your grave.  You understand.  We went to the store and bought pansies to put in your little memorial garden we have here.  Pansies.  I know.  I have expanded my flower choices for you.  At first I would only allow lilies in your garden.  But then I realized it would look prettier and be more honoring of you to have pretty flowers in their all year long.  So you now have pansies.  Then in the late winter you will have daffodils popping up.  Pretty!  Though not as pretty as you were!  

Mommy loves you forever Lilly, and one day I will see you again!  Until then, the Lord will continue to be with us both.  Give Blueberry a hug for me Lilly.  I'm glad you two have each other.

All my love,
Mamma

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18

"The Lord delights in those who fear him, who put their hope in his unfailing love."  - Psalm 147:11

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 

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.

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

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

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.

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

Day 11: Lily flowers

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

Lillium. 
Kingdom:  Plantae
Order: Liliales
Family: Liliaceae
Subfamily: Lilioideae
Genus: Lilium

True lilies grow from bulbs and have large prominent flowers. 

Lillium Firecracker.

Kingdom:  Heaven

Order:  Christian

Family:  Hollowell

Subfamily: Trisomy 18

Genus:  Homo sapiens

 True Lillys are created by God and large loving hearts.




[Jesus speaking] “'So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these.  Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith?'" - Matthew 6:28-30

We have fun with Lillian's nickname of "Lilly."  :) 

Day 10: Holidays

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

Since Lilly lived 17 months on earth, we were blessed to have her with us for every holiday.  Of course it associates some sadness to that holiday or event as we "remember when Lilly ...."  But I think it is worth it.  For example, today we went to the Christmas tree farm to cut our tree.  Lilly had been with us twice.  This year we had Solomon and he wore Lilly's santa hat.  Being there both hurt my heart yet made me smile as we remembered Lilly with us there previously.

Here are some holiday Lilly pictures:

New Year's Day 2011:

Valentines Day 2011:

Easter 2011:

July 4 / Lilly's birth day 2010:

and 2011:

Reformation Day / Halloween 2010:

and 2011:



Thanksgiving 2010:

Thanksgiving 2011:

Christmas 2010:

In searching for an appropriate scripture for today's post, I came across:

"The Levites calmed all the people, saying, “Be still, for this is a holy day. Do not grieve.” - Nehemiah 8:11

I thought of how in American we so often put such a heavy emphasis on celebrating the holidays ("holy days").  And how disappointing - or sad - they end up being for so many people.  If this is something you are struggling with this holiday season, remember:

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18

Day 9: Lasts

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

I thought a post on "lasts" would be appropriate to follow yesterday's post of "firsts."  But as I considered ideas, it seemed all I could really focus on was Lilly's last day.  I decided to go with that rather than "last day at church," "last bath," "last doctor's appointment" - even though I remember those things.


Lilly's last meal was pureed spinach with orange juice via her g-tube.  I don't have a picture of that, but here is another of her getting a meal -this was taken at the zoo (Oct. 2011):

After a meal, I had to keep Lilly upright and still for a few minutes, or the meal would come right back up.  Her favorite thing to do was to look at and feel the pages in her fuzzy animals book.  We kept it at the table:

Lilly LOVED her weekly physical therapy session and occupational therapy session.  She had her last physical therapy session on her last day and her therapist said that Lilly had done her best since her open heart surgery the past November.  I so wish I had a picture of Lilly with both of her therapists!  But here is a picture of her doing some therapy homework with me:

I took pictures of Lilly almost every day of her life because I never knew what day would be her last.  I took the last picture I have of her alive on Dec. 14, the night before she died.  She is snuggling with big sister Tabby.  She's wearing her sock monkey pjs, which I kept on her the next day because they looked so cute and comfy on her.

The last video I have of Lilly, I took and posted the morning of the day she died.  I still shake my head watching it.  Who would have suspected that day would have been her last?

Finally, the very last time I held my Lilly was after her viewing, Dec. 18.  After most everyone had gone, I just had to pick her up out of her coffin and hold her one more time.  She was cold and heavy and stiff.  But her hair still tickled me and I just held tightly.  We got our last family picture made and how crazy it is that it turned out to be one of our best.  But it isn't one that I want to enlarge and frame.  :(

What a beautiful doll baby she was.

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

On a different note, I shared with other Trisomy angel moms about Hunter crying for the first time over Lilly yesterday.  A number of the moms shared their experiences with their living children and how they grieved.  Apparently grief can be delayed in boys and in also just in younger children.  As they mature they experience the grief differently.  Today Hunter was pretending to be my pet dog.  Then he started to cry and said he was a dead dog and he insisted that I bury him.  I played along, knowing he's working things out in his mind.