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, August 29, 2013

The Lilly Memorial Project: Angel feather tin

Caleb - 3/20/09 - 8/29/11 - full Trisomy 18

Recently I was reading a lovely magazine called Seasons at Home.  (This magazine, by a homeschooling family, is full of crafts, woodworking projects, recipes, encouragement, etc.)  One of the craft ideas in their summer issue was to take a mint tin box and cover it with pretty paper and decorate it and fill it to use as a little sewing kit.  I've seen similar ideas with the mint tins before, but the one in the magazine was just so pretty I felt inspired to make one.  I don't really have a lot of extra crafting time but the idea popped into my mind to use the little tins as "thinking of you" gifts for families who have lost loved ones.

Caleb - what a beautiful smile!
I made my first "angel feather tin" the other day and mailed it to the family of Caleb.  Caleb was a sweet little boy that lived over two years with full Trisomy 18.  His 2nd angelversary is today.  (You can read about Caleb's life on his blog Caleb's Journey.)

Caleb's mama is a wonderful resource and I've been blessed to talk with her by phone several times.  I learned a lot from her when Lilly was several months old and I needed direction for treatments and daily care.

I sort of made up the box project as I went along, but the end result made me smile.

I put a white feather in the box, and printed out this angel feather poem:

A feather from an Angel
Is one we rarely see.
But this one is quite different,
And as special as can be.

This feather is a reminder
Of a special person's love...
Who is now your Guardian Angel
Watching and protecting from above.

I also printed out this scripture:  “See, I am sending an angel before you, to guard you on the way and bring you to the place I have prepared.”  --  Exodus 23:20

I then printed out several pictures of Caleb.  Finally I strung Caleb's name in letter beads along with an angel and cross beads.

I thought it turned out nice and found it really theraputic to make.  I may have enjoyed it more than his family.  I look forward to making one for my Lilly sometime and also other angel families.  Maybe I'll become the "angel feather tin lady" or something.  :)  We'll see how they are received.  My goal is simply to honor other angel children in little ways that tell their families that their child is not forgotten.

Here are some pictures of Caleb's box:


Tabby made the Mighty Mouse bottle cap magnet for me to include.  Caleb was nicknamed "Mouse" and we all think of Caleb when we see Mighty Mouse.

Dear READERS:  If you have any empty mint tins that you don't want, I'd love to have them for future angel feather boxes.  Thank you!

Sunday, August 25, 2013

Typical child mindset

I realized the other day that at 11 months old, Solomon has outgrown a bunch of the baby toys that I have out for him.  I've been so busy focusing on helping my other two children with some issues that it just hadn't crossed my mind that Solomon is capable of so much more than I was expecting of him.

Of course a lot of that is me trying to get out of the "physically and mentally delayed child" mindset (Lilly) and back to the "typical child" mindset.  It seems almost anything new Solomon does I am just in awe.  It's hard to explain how jumbled up my mind is in all this.

So the other day, I got out a book called Slow and Steady Get Me Ready: The How-to Book That Grows With Your Child by June R. Oberlander.  "260 Weekly Developmental Activities From Birth To Age 5."   I initially used this book with Solomon but then it just got forgotten for awhile.  I opened up the book to the section for close to Solomon's age, picked out an activity, and got it together for him in minutes.  He picked up on it immediately and continued playing it over and over.

 (This particular activity was simply that I cut a hole in the top of an empty oatmeal container, then gave him wooden spools and clothespins to drop through the hole.)

I will definitely be keeping up with new activities after this.  I mean, we do so much together and I talk to him about what we're doing.  But he enjoys learning activities and it is good for him.  Plus it even buys me a little time for a chore or two.  ;)

I used this book a little with Lilly to, for ideas.  But obviously, I used a delayed schedule.

One other activity idea e-book that I think is excellent is Finding Educational Activities in the Most Unexpected Places: 200+ activities for young children using common household objects by Angie Kauffman at .   This e-book is full of ideas for toddlers and preschoolers.  Simple, quick, and easy.  Sure you can get free ideas by doing online searches, but sometimes - when your time is already limited - it's nice to have that work done for you.  The e-book is currently only $2.99.  More info is here.

 I made a new friend not to long ago, that lost a little girl about 12 years ago.  Her daughter had Trisomy 21 (Down Syndrome) and lived 6 months.  We often talk about our angel girls and what their lives were like, what our lives were like before, after, etc.  I learned yesterday that she had many of the same fears when pregnant with her rainbow baby.  Talking with someone with a similar experience is so amazingly therapeutic.  It's nice knowing I'm not crazy!

Another thing we talked about yesterday was how people do morn differently.  But that is OK!  We all have similar feelings and yet there are differences.  For example, this morning I walked into the kitchen to start making breakfast.  The radio was tuned to WCPE - the Classical Station.  On Sunday mornings, there is a program called "Sing for Joy" of religious music that we listen to while making breakfast and eating.  (Or as the kids call it "Scream for Joy.")  The hymn "How Firm a Foundation" was on.  I immediately turned around and left the room, burst into tears, composed myself, and went back in when the song ended.  I had had a flash in my mind of sitting in the ambulance holding Lilly's body and singing this song to her after she died.  Why this made me cry this particular time I have no idea.  But it did.  And next time it probably won't.  What's that about?  I don't know.  But I know that being hit with sadness at unexpected times is normal. 

"Therefore encourage one another and build each other up, just as in fact you are doing." - 1 Thessalonians 5:11

Thursday, August 22, 2013

Be An Angel Day

Today is officially "Be An Angel Day" according to the Holiday Insights website. Lilly was an angel both on earth and now in heaven!

I usually print out the "Holiday Insights" page for each month.  In the mornings, when I'm writing Tabby's school and chore schedule down for her, I write at the top of the page what day it is.  For example, besides today being "be an angel day" it is also "national tooth fairy day."  I like to add a quick, silly drawing to go with the day.  The kids and I are usually amused by these days.  There are a lot of weird days (ex. "National Mustard Day") but also some days are inspirational.  For "national ice cream sandwich day" we really did learn how to make ice cream sandwiches.  Yum!

Our schooling is very light these days as I am needing extra time to prepare for our new school year.  I just finished reading a homeschool book called Plan To Be Flexible by Alicia Kazsuk.  (The author blogs at The Vintage Creative.)  I found the book to be very very encouraging and useful.  The subtitle explains the book:  "Designing A Homeschool Year and Daily Schedule That Works For Your Family."  The book helps:

- analyze what's working (and what's not) in your homeschool
- learn the fine art of living within (but not under) a schedule
- develop a living, flexible curriculum plan for each student
- discover how to homeschool with joy and freedom

(that list is from the back cover)  The book is full of practical ideas, resources, and stories.  Even though I've been homeschooling for about 7 years now, I found this book very useful.  In fact, I know I'll be re-reading it a number of times!

So what have the kids been up to while I'm busy with school plans and organizing?

After reading all the Lord of the Rings books, Tabby has taken up archery:


Hunter got some more electronics to take apart from my brother P.  I think this is a laptop:

Solomon has been practicing climbing and continues to be obsessed with opening and closing cabinet doors.  Today it climbed right up into a cabinet!

Here's a little update about the farm animals.  The goats have eaten almost all the leaves they can reach, so we have been cutting branches off trees in our woods and giving it to them.  They get that in addition to their daily "Goat Chow" and hay.  (Yes you really can buy "Goat Chow".)

Solomon got hysterical laughing today at Krista stretching up to eat leaves:

The chickens are about full grown now.  We are checking the coop each day waiting on that first egg!

 Roadrunner is a (tiny!) rooster and is acting more and more "roosterly":

"This is the day the Lord has made; We will rejoice and be glad in it." - Psalm 118:24

Monday, August 19, 2013

Having HOPE in a Trisomy 18 (or 13) pregnancy

"For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope." - Jeremiah 29:11

I occasionally get e-mails from frightened women who are pregnant and have learned they are carrying a Trisomy 18 or 13 baby.  In their online researching they have come across Lilly's blog.  Their reaction is always amazement - they can not believe Lilly lived 17 months with full Trisomy 18!  That knowledge goes against everything their doctor(s) have told them.  They thank me for sharing Lilly's story and giving them HOPE. 

"The LORD is my portion,” says my soul, “therefore I will hope in him.” - Lamentations 3:24

Most of these women share that their doctors, or even spouses or someone significant in their lives, are telling them they need to abort their Trisomy baby because if for some reason the baby does live, it will be in constant horrible pain, or will be more work than the parents can handle, or it will destroy the family, or its life will make things unfair for its siblings, etc. 

Hunter & I the month before Lilly was born
Believe me, I understand that the statistics given for the survival of a baby with Trisomy 18 or 13 are low.  And, sadly, they are relatively accurate. Still, I think it is unfair of doctors to ONLY give the negative side of Trisomy 18/13.  (I remain thankful for the positive support my midwife gave me.  Her approach was be prepared for either alternative and "wait and see" and PRAY!)  Because of the internet, other Trisomy blogs, and Facebook groups like "Trisomy 18 Mommies", I know there are quit a number of children with Trisomy 18 and 13 that have lived for years and are doing quite well.

"Know that wisdom is such to your soul; if you find it, there will be a future, and your hope will not be cut off." - Proverbs 24:14

Recently I was reading through the latest catalog from the Bulk Herb Store.  In the section on herbs, they are listed alphabetically and a summary given for uses for each.  (Makes a fascinating and informative read!)  When I got to Echinacea, I read something I did not know about it:  "it increases the amount of T-cells and macrophages in the bloodstream."  I suddenly felt so disappointed in myself after reading this.  I immediately remembered when we learned that Lilly had no thymus and that meant her body was not producing immune fighting T-cells well.  (Information on that here.)  I remarked to Frank that had I known that about Echinacea when Lilly was alive, I probably would have kept her on it year round, instead of just giving it to her (tincture form) when she or someone in the house was sick. 

Before I knew it my mind was rapidly replaying Lilly's life and I was thinking of all the areas where I "could have should have" done better.  Frank reminded me that God had Lilly's days numbered from the start, and that I did the best I could.  I know I know ... but still ...

"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 139:16

If I could go back and "do it all again" I would start with my pregnancy with Lilly.  Instead of alternating between fear and denial of the knowledge she probably had Trisomy 18, I wish I had added knowledge to that.  Grim statistics aside - I wish I would have researched.  Really researched hard online.  Instead I only tried it a few times, only found the "bad stuff", and gave up in the middle of sobbing.  If only I had pressed on and learned the "good stuff."  Because for some reason, that wasn't so hard to find after our precious Lilly was born, looking bright eyed and so cute.

Lilly dressed and ready to leave the hospital, only hours after her birth
I did know about the book Care of the Infant and Child with Trisomy 18 or Trisomy 13 but in my mind I thought "IF this baby survives birth - THEN I will get the book and read it."  Why in the world did I not want to know this valuable information in advance?  Ugh!  I could have been so much more knowledgeable and aggressive in getting Lilly the help she needed earlier.  Plus I would have been so encouraged to see the pictures of and read about some of the amazing children in that book.

I know it is really pointless to second guess myself.  (And not good - it makes me depressed.)  But I am sharing this to help anyone else reading this who is in the position I was in in 2010.  Don't listen to the negatives in the medical community and resign yourself to "well my baby will just die in the womb so what's the point."  No.  Have HOPE that your baby will live.  Pray to God for your baby's life.  And then educate yourself so that you will be able to do the best job possible out there in caring for and loving your precious Trisomy 18 or 13 (or any other Trisomy!) gift!  No it won't be easy but your life will be more blessed than you know is possible.

Lilly - 16 months

God may call your baby home before it is born.  But still, you will have done all you could and you will be so much more educated about what Trisomy 18 or 13 is and that will make you feel closer to your baby - just understanding it better.  

The world needs more of us who understand about Trisomy and can help spread more understanding about it - especially among the medical community.  When we had our ultrasound with Solomon, we were thrilled to have the same doctor come in to talk to us that had been there during Lilly's ultrasounds.  He asked about Lilly and was amazed with what we told him!  (See my post about that here.)  
I've mentioned frequently how thankful I am for the Trisomy support organization SOFT.  Another really good organization is Hope for Trisomy 13 & 18.  I love the very name:  HOPE.  (Check out Lilly's story in the Inspirational Stories section!)  The Trisomy community desperately needs groups like these to help get the word out there.  (Along with us noisy mama's who keep bringing it up!)


Receiving the news that your baby may have Trisomy does not have to be a death sentence!  Yes it's scary and yes it is full of unknowns.  But have HOPE.

“Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.” - Romans 5:5

Happy, smiling Lilly!  Full of HOPE!
"Be strong and take heart, all you who hope in the LORD.” - Psalm 31:24

Thursday, August 15, 2013

Happy 11 months Solomon!

Can't believe my rainbow baby boy is 11 months old today!

Solomon loves our dogs and they are both very gentle with him

Solomon can walk on his own - when he's not thinking about it much.  A couple times a day he'll just walk over to something.  But he still prefers to hold onto things to get to something. He likes to give big open mouth slobbery kisses - sometimes ending with the bite from his one tiny bottom tooth.  He gives tight bear hugs.  He's always been a quiet child but is "talking" a lot more lately.  He likes to be a part of everything going on.  And he is a typical little boy - he knows just how to roll and play with little cars and trucks and tractors.  He has that built in boy soundtrack to make the noises as he pushes them along.

But ... Solomon's very favorite thing to do is to open and close cabinet doors!  This kid can seriously spend 10 minutes opening and closing a door.  Then he'll move to the next one.   He doesn't usually mess with what is inside the cabinet.  Just likes the open and close effect.

Thank you Lord for our rainbow baby.  I am so grateful for all the healing and love he has brought with him to this life.  I pray for the many other families I know of that deeply desire a baby and pray you answer them according to their requests.  In Jesus' name amen!

Tuesday, August 13, 2013

The Pray for Lilly blog's three year anniversary

It was three years ago, yesterday, that I started this blog to keep people updated on Miss Lilly.  (My very first post is here.)  Seems like so very much has happened since then!

I was actually reminded of this anniversary a few days ago when we were outside after supper and Hunter asked Frank to please get the double stroller out of the barn so that I could push him and Solomon around.  Hunter and I remembered how he used to ride with Lilly in that stroller.  Here is the picture I posted of Lilly in the stroller from my third blog post:

Tiny Lilly was a bit over one month old here
 After awhile, Hunter got out and pushed Solomon around by himself:

Another anniversary this year is Ball canning jars 100th anniversary.  I love to use canning jars for storing food, goat milk, etc.  I'm just not a fan of using plastic for much.  I use jars to keep baking supplies, rice, beans, etc. mice-free:

I used to use the ice cube tray method for freezing pureed baby food, but now I found I prefer the little jars:

Do you see the pretty blue pint sized jars?  Those are the Ball 100 anniversary jars that are available for purchase this year.  They are blue in memory of the old jars which were blue colored because of the impurities found in the high-iron sand that the company used.  (sourced from Indiana)  Advances in glass making eventually got rid of these impurities resulting in clear glass.

I have a number of really old canning jars I use for decoration, that I got from my mother-in-law. Notice the old style lids:

 I have found a couple jars like these on our property.  They have the old style lid, but are not blue color.  When this house was built (about 1907) the people just threw their trash out into a certain part of the yard.  Now whenever it rains, glass and other things come up out of the ground.  We find interesting things at times, like the neat old glass jars and bottles.  The bottom part of an old iron came up earlier this month.

I want to date my jars and found this guideline to help.  Scroll down to the logo with dates section if you want to see how. 

OK, well!  Here I started out talking about stroller rides and ended up rambling about canning jars!

I have been thinking a lot about "HOPE" recently and how I wish more people would associate Trisomy 18 with hope.  I will be sharing a post with those thoughts soon.

"But I will hope continually, and will praise You yet more and more." - Psalm 71:14

Sunday, August 11, 2013

Possible help if you're feeling a bit - or a lot! - crazy

Are you feeling out of sorts?  Depressed?  No motivation?  More irritable than you ever remember?  Flashes of anger for no good reason?  Crying about anything and everything? And sooooo very tired?

OK - maybe I am was the only one.  I've been meaning to write this post for months, in case it helps another woman out there reading this.  But I think I was holding back because well - don't we all want everyone to think we have it all together?  I'm "super mama" right?  (OK - even I'm laughing at that one.)

I felt like I lived on a roller coaster of emotions throughout Lilly's life.  That, however, was "normal."  Anyone loving and caring for their super special needs baby that is not even statistically supposed to be alive knows that.

Statistics?  I didn't follow statistics!
And then God called our Lilly girl home.  It still hurts my heart more terribly than I can say.  I still cry at times and I think about Lilly many times every day.  Roller coaster grieving.  But, I actually think my grieving is "normal."  Maybe even a little better since I never went through the "anger" stage so many speak of.   And maybe that is because I take immense comfort in knowing Lilly is safe and waiting for me.

Solomon and I tell Lilly & Jesus "hi" every morning

Nine months to the day that Lilly died, our rainbow baby Solomon entered the scene.  I felt healing begin as soon as I held him in my arms.

Three weeks later we moved to our Lilly colored farmhouse.  And I began to fall apart.  (There I admitted it.  I have failed in my life long aspirations to be "practically perfect" like Mary Poppins.  Seriously.  I love perfection.) 

When you have a new baby, you are supposed to rest as much as possible.  Hormones are going crazy as the body recovers from childbirth and adapts to being a mama of a new baby.  Too much physical exertion too soon causes more hormonal havoc.  So did I rest?  Not at all.  Remember our move?  Funny how God dropped our "dream house and property" in our laps at that time.  (And that's not "funny ha-ha.")  I had a house to unpack and a new baby that wanted to be held at all times.  It was rather overwhelming.

I think it took about 6 weeks to unpack everything, get pictures hung, etc.  But instead of feeling all better with relief, I felt relief without feeling all better.   I had days where everything made me cry.  I didn't feel motivated to do anything.  I felt very depressed.  And I remember feeling more irritable than I ever felt in my life.  I had to literally bite my tongue many times to keep from exploding I just felt so mad at everyone and everything.  Irrational irritability and anger.

Looking back I'm amazed at how well I held it together on the outside because my inside was such a mess.  I often said to Frank, "I don't know who I am!"  or "This is not me!" and asked him to please pray for me.  I didn't know if it was hormonal issues from post-pregnancy, or grieving for Lilly, or what.  Very confusing.

I told my friend C. about it one day when she called.  I said I supposed I was having postpartum depression of a sort.  C. had gotten to a bad place mentally right after her twin girls were born.  She shared with me about a book that she said changed all that around for her.  It is called Female Brain Gone Insane: An Emergency Guide for Women Who Feel Like They Are Falling Apart by Mia Lundin.  (Yes the title is pretty extreme sounding - the author admits that too!)  C. said if she ever felt those problems returning, there was an amino acid she could take and feel better very quickly.

I ordered the book and read it as quick as I could when I got it.  The author discusses "emotional symptoms and issues associated with hormone and brain-chemistry imbalances."  I was amazed at how well some of my symptoms were described.  The book is divided into three parts.  The first looks at "The Science Behind the Insanity and the Solution."  The second is "Four Steps to Sanity--Your Emotional Rescue Plan."  The third is "Supplementary Steps for Adrenal and Thyroid Support."

I dutifully filled out the charts and ended up in the "combination type" category.  This meant I needed to take something to calm my brain down, then a few weeks later add another supplement to make me more alert and motivated.  I ordered the 4 amino acids that the author recommended figuring I'd give it a shot.

Fast forward to about 5 weeks after taking all the amino acid supplements daily, I felt ... AWESOME!  Just like I used to in the past.  I felt calm and focused and motivated.  YAY!  I was actually really amazed that it worked.

I am continuing to take the same supplements - I'm actually afraid to stop.  But I've cut back on the dosage and still feel good most days.  (We all have frustrating days at times - amino acids or not!)

I'm so thankful to the Lord for answering my prayers - through amnio acids!

"But thanks be to God, who gives us the victory through our Lord Jesus Christ." - 1 Corinthians 15:57

I highly recommend this book to women of all ages and stages of life.  It just feels so good to feel good!  :)