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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

Friday, April 12, 2013

Needing a spoonful of sugar ...

Mary Poppins sang that a spoonful of sugar would make the medicine go down.  Would it help Solomon?  I don't know!




I'm not sure how much medicine actually is getting into my boy.  He despises the stuff.  In fact, he now starts fussing as soon as I put his bib on him.  (He has to wear it because he spits most of the medicine back out and it makes a huge mess.)  It's only 1 teaspoon twice a day, but he makes the 1 t. seem like a gallon.  I think I dread "medicine time" as much as he does.  Much to my disappointment he won't even take any solid food by mouth anymore.   Makes me grateful for how easy it was to give Lilly medicine - through her g-tube!  Thankfully though, Solomon is much better.  Hunter had a really bad day on Wednesday but he is getting better too.  Me - I think I'm slowly making process.

Over at The Craftsy Kitty, Tabby has been busy making soap and tie dyed baby clothing.  (The Craftsy Kitty is Tabby's little business making and selling things in honor of Lilly's memory.)  Here are the boy and girl outfits she tie dyed (onsies size 0-3 months, matching socks):



Her description of the above is here and here.  She has also tie dyed t-shirts for friends.  She takes special orders.  If you have any questions just email her at CraftsyKitty (at) Gmail.com

Here is the link to her soap - she makes many colors and scents - also can be custom made.  This is glycerin soap.  She plans to try making Shea butter soap soon.



 And finally, here is my favorite item she currently has for sale:





The description for the owl applique onesie is here.

Directions on how to order is in the right column of Tabby's Craftsy Kitty blog and again, her email address is: CraftsyKitty (at) Gmail.com

"In everything give thanks; for this is the will of God in Christ Jesus for you." - 1 Thessalonians 5:18

Wednesday, April 10, 2013

Book: Embracing Beauty

First, just an update on Solomon.  (Thank you for all the emails and prayers asking about him!  I've been slack posting because Hunter and I are pretty sick too.)  On Sunday evening, he got a fever of 103 degrees.  It was down to 101 by morning and I could tell he still felt awful.  I went ahead and took him to the doctor Monday and am so thankful I did.  Our pediatrician, Dr. R, said that his ears were quite infected.  All the nasty stuff that he can't get out easily had bacteria building up.  Even though I was suctioning him a lot - it's not the same as being able to really blow your nose!  Dr. R prescribed an antibiotic.  She also said do lots of chest percussions to break up crud (we're all good at those from doing them daily on Lilly!).  She also suggested giving him Pulsatilla (homeopathic remedy) to loosen congestion.  (Thankfully I have a basic homeopathy kit so I had it.)  And finally, she said Elderberry is another good natural aid.  I started Solomon on the antibiotic Monday when we got home, and by evening he was already feeling much much better.  And since antibiotics tend to wreck havoc on tummies in our house, I'm giving him a probiotic too.  (Just adding it into his chicken broth.)

As of today, Wednesday, Solomon feels so much better and has no fever.  He still has a pretty nasty cough though.  But overall I think he's doing better than Hunter or I!  He's loving playing peek-a-boo again!




Now if I can just get that antibiotic into him without him throwing a fit and spitting most of it back out!

A number of years ago, I attended the Association of Classical Christian Schools conference with Frank.  (He attends every year, as part of his job.)  The theme that was was "truth, goodness, and beauty."  It got me thinking in a way I don't think I ever had before about these three things in relation to God - especially beauty.

Why is it that we sometimes have the impression that super plain is better?  Perhaps it seems more unworldly?  I remember hearing about some missionaries in a foreign country and the family lived in a purposefully super plain, bare little house.  Some local people came to see them and asked them why didn't missionaries love beauty? Why did they love plain and boring?  The locals were very poor but shared that they were still able to pick wildflowers and they liked to put them in their little shack to add beauty.  That made the missionaries re-think their purposeful plainness!

Because think about this.  Who created beauty in the first place?  The answer, of course, is:  GOD.  In just glancing out my window I am stunned by the variety of flowers, birds, and trees that God created.  And that is only a teeny tiny part of His creativity!  So is it wrong to enjoy beauty?  And to show it?  And share it with others?  In general "no."  (Of course, because of sin, we can turn anything into something that is NOT a good thing.)

"And God saw everything that he had made, and behold, it was very good." - Genesis 1:31

So does God want us to hide His beauty?




About a year and a half ago, I posted about a cookbook called Real (Fast) Food by Trina Holden that I was using and loved the recipes from.  (That post is here.)  I've been in contact with Trina off and on since then.  I was interested to learn that she grew up near where we live in N.C.  That is until her family moved to a homestead in upstate New York to live off the land!  They even lived in a tepee until they built their house.  (She writes about her adventures - past and present - on her blog at trinaholden.com )

Trina has just published another book called Embracing Beauty.  It is for us moms who are almost constantly changing weight and shape.  The subtitle is:  "practical style for every shape and season of motherhood."  Her timing with this book couldn't have been better for me.  :)  I have now lost all my pregnancy weight, thanks to the information and recipes in the book Trim, Healthy Mama.  As I've mentioned here before, I gained a huge amount of weight with Lilly and due to a number of factors, never lost it all.  After she died, I was starting to lose some more weight, but then was pregnant again and the weight started piling back on.

Now I'm back to a normal weight and am finding a lot of my clothes too big.  You know - that big that's not huge, but definitely "frumpy."  I hate frumpy!  I've written too about how I've struggled with a diastasis for a long time now.  (Where my stomach muscles split during pregnancy and never healed back together.  So my stomach pooches out.  You can check to see if you have a diastasis - here is how.)  I have done much healing there, but recently damaged it again and I feel like I'm starting over.  Ugh.  Skinny but with a stomach pooch that makes me look pregnant.  Back to looking frumpy - and pregnant! - in shirts.  I was totally burned out on doing the diastasis exercises I knew of, until recently when I found, through Trina!, an online "workout studio" where for a small monthly fee, you have access to over 50 different workouts.  (It's like having a personal trainer talking to you and working out with you - all from your computer.)  It is called Fit2b.  The best part is they are "tummy friendly" exercises. I am working through the exercises for moms, specifically targeting the diastasis.  I'm enjoying the variety of exercises and especially that it is only taking about 15 minutes a day to do them, instead of the 45 minutes my other tummy exercises were taking.  Lord willing, I'll have a flat - or flatter! - tummy again soon.  (Fit2b has many many workouts, including for kids.  And, as Tabby noted, the instructor actually wears modest clothes.)

OK, back to frumpy.  So I now need some new clothes.  I don't want frumpy, drab, or "the mom uniform."  (I had to laugh - Trina defines the "mom uniform" as a t-shirt and jeans.  That was more like my "life uniform".  In my later teens and twenties it was the essential heavy metal t-shirt with jeans.  Then it was plain colored t-shirts and jeans.  Then it was babydoll tops and jeans.  Now I prefer skirts and dresses.  Kind of ironic I once saw the heavy metal shirts as "rebellion" but these days just wearing skirts is "rebellion" against culture!)  I like interesting outfits and find I like a more vintage look. I'd actually like more color. But how to start?

That's where Trina's book steps in to guide me.  It's all about helping the reader find their personal style.  She has all kind of guidance on this, including how to do it inexpensively.  Trina shops at thrift stores, just as I mainly do now for clothing.  She even has a chapter in her book on tips for thrift store shopping including when you have little ones in tow.  (She has 3 children and one on the way.)  Speaking of chapters, you can see the table of contents listed here.)

One thing I appreciate about Trina's book is that she begins with sharing her own journey (including the misguided modesty of frumpy jumpers and long denim skirts during the family's homesteading years) and then looks at what God says about beauty.  She writes: "God is where beauty began.  Not only did He create beauty, it's an element of His very being.  Beautiful is something God can't not be, and beauty is something He can't not create.  He created us in His image, as both a reflection of His beauty, and a celebration of His love for beautiful things." (p. 19)

She argues that embracing beauty is an act of worship:  "Because beauty is an attribute of God and something He is passionate about, anything we do to recognize and embrace beauty can actually become an act of worship.  Pausing to take in a sunset, admiring the delicate beauty of a flower, and agreeing with Him as to the beauty of the body He gave us, honors His design and skill as creator, and this is worship."  (p. 19) 

So how should we cloth ourselves, knowing that God created us in His image and that He loves beauty?  Drab and frumpy?  Or the opposite - immodestly and screaming for attention?  Trina discusses these types of things in her chapter on "Expressing God's Glory" and more throughout the book.  She concludes "I've come to realize that what I wear is more than just a barrier between my body and the public, but can actually be a testimony to all I believe about beauty and its Creator."

Wow.  That ought to make you think the next time you reach for the sloppy sweats and ripped t-shirt and head out to go shopping.  I believe that God cares about all the little details in our lives but honestly I had just never thought about it in relation to my clothing very much.  (Other than trying not to dress immodestly of course.)  How short sighted of me!  I am a child of God and so how I am clothed is an important part of that.  Because how I look and act is a reflection on Him.

Well I've been popping on and off the computer all morning to write a little here and a little there.  I need to wrap up now, it's time for me to teach math to Tabby.  (Did you hear her outward groaning from me just thinking that?  Do you know of a pill I could give her to help her enjoy math? Hmmmm ... the inventor would be a millionaire for sure!)  So I will stop here and say that I think you would be blessed by Trina's book Embracing Beauty. (available in several different formats)   There are many chapters of practical advice in it.  I've read a number of fashion type books before, but this is the only one has ever seemed realistic to my life.  :)

"From Zion, perfect in beauty, God shines forth." - Psalm 50:2

Sunday, April 7, 2013

Battling fear

Do you ever get so scared about something you can barely breathe?  I have.  Many times during Lilly's life.  And a number of times in the past few days.

"Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you.” - Deuteronomy 31:6 

Yes God, I know.  But ...

"For God has not given us a spirit of fear, but of power and of love and of a sound mind." - 2 Timothy 1:7

Yes God, I'm thankful but ...

"Do not fear therefore; you are of more value than many sparrows." - Matthew 10:31

Thank you God, but ... but ...

"When I am afraid, I put my trust in you." - Psalm 56:3

Oh God, I'm really failing with the trust thing.  :(

You see Solomon is sick.  He has a cough.  And a cold.  Not really a big deal is it?  We all get colds.  Many people get colds often throughout a year.  So why is Solomon's cold scaring me?

Lilly.





(Photo - Mother's Day 2011.  After Lilly almost died. The nurses and doctors had brought her back.)

Though today is better, for the past few days there has been a war in my mind.  A battle between fear and trusting God.  Fear of what?  Fear of losing another child.  Fear of the unknown.  Fear of what is coming next.  Fear of making a terrible terrible mistake that affects someone else.

Solomon's cold is bad.  And when he gets agitated, his breathing can be very erratic.  There will be pauses between breaths.  I found myself often lifting his shirt to see if he was retracting.  I kept remembering how Lilly would begin doing that during a sickness, and then things could get frightening very quickly.  I listened to Solomon's chest, lungs, heart several times - with Lilly's stethoscope - just to make sure they weren't "crackly" or "junky" like her's would get.  I sat under a big towel with him, inhaling steaming water with essential oils in it, to open his breathing. I wondered if he needed oxygen instead. Gave him hot baths with the healing salts I made mixed in.  I wondered if I needed medicine so I could use Lilly's nebulizer on him.  I used Lilly's "super snot sucker" on his nose (wow does he hate it!) and thought about the suction machine at the hospital. 

The hospital.  I kept wondering if he needed to go to the emergency room.  Growing up I only went to the emergency room once as a child.  This just wasn't something that my family needed to do.  But it became normal for Lilly and that got me used to it.  I asked my husband if he thought we needed to take Solomon.  He answered what I knew deep down - no we did not.

This is a common cold.  Solomon is going to be OK.  See that?  He was even smiling some when I talked to him.  Or spoon fed him some homemade organic chicken broth.  I am doing everything I can to help him heal quickly.  And most importantly - I keep badgering the Lord with my petitions to heal my baby.  And ... if he does need to go to the hospital ... let me see that clearly.

"He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection." - Psalm 91:4

Lord, I know you are there.

"I prayed to the Lord, and he answered me. He freed me from all my fears." - Psalm 34:4

Lord, you hear me.  I wish I were stronger. Please help my faith to grow.


You answer me in so many ways.  In my life.  Over and over.

Lilly, just a few days after almost dying that Mother's Day:


And a week later, ready to leave the hospital.  She lived well another 7 months.




Solomon, just a day before getting sick, sporting a mashed avocado moustache and goatee.
 


I'm trusting God my little boy will be smiling like this again soon.

What do YOU do when your trust needs "sharpening"?

Wednesday, April 3, 2013

Peace out my window

This week has been particularly busy with extra appointments, demands, and I have been preparing to teach a class Thursday evening to one of Tabby's groups.  It feels too busy - it's almost too much.  I'm longing for Friday to come so life will "slow" back to it's normal busyness!

However God blesses me with many "peaceable moments" during the day.  Hunter telling me he loves me for the 20th time.  Solomon's arms around my neck.  Listening to Tabby play piano.  Seeing my husband drive up the driveway at the end of the day.  And being able to look outside through one of our many windows.

One thing I love about living in this home is that there is a farm across the road complete with cows.  It's just so relaxing and fun for some reason.  Whenever I raise the shades in Hunter's room in the morning we look out his window to see if the cows are out.  Here is the view from our front porch:

Zooming in on the cows:

[Jesus speaking] "Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid." - John 14:27

 

Sunday, March 31, 2013

Happy Easter!

Remembering our Easter Lilly bunny:



I just had to try Lilly's hat on Solomon this morning:




The hat fit Lilly much better, but it was fun anyway!

One of the songs that Tabby has been working on for piano for awhile now is "Christ the Lord is Risen Today" by Charles Wesley.  (Charles Wesley is probably my favorite hymn writer.)  The hymn has been running through my mind most of the day.  Just didn't have time to record Tabby playing it to post here.  But I told her I need to record her playing something soon.  :)  Here are the lyrics:

1. Christ the Lord is risen today, Alleluia! 
 Earth and heaven in chorus say, Alleluia! 
 Raise your joys and triumphs high, Alleluia! 
 Sing, ye heavens, and earth reply, Alleluia! 

2. Love's redeeming work is done, Alleluia! 
 Fought the fight, the battle won, Alleluia! 
 Death in vain forbids him rise, Alleluia! 
 Christ has opened paradise, Alleluia! 

3. Lives again our glorious King, Alleluia! 
 Where, O death, is now thy sting? Alleluia! 
 Once he died our souls to save, Alleluia! 
 Where's thy victory, boasting grave? Alleluia! 

4. Soar we now where Christ has led, Alleluia! 
 Following our exalted Head, Alleluia! 
 Made like him, like him we rise, Alleluia! 
 Ours the cross, the grave, the skies, Alleluia! 

5. Hail the Lord of earth and heaven, Alleluia! 
 Praise to thee by both be given, Alleluia! 
 Thee we greet triumphant now, Alleluia! 
 Hail the Resurrection, thou, Alleluia! 

6. King of glory, soul of bliss, Alleluia! 
 Everlasting life is this, Alleluia! 
 Thee to know, thy power to prove, Alleluia! 
 Thus to sing, and thus to love, Alleluia! 

Thursday, March 28, 2013

Homeschool tip: Times Tales

If your kids are struggling with learning the multiplication tables, there's a great system out there to help in memorizing them.  Several years ago I bought a spiral bound book called "Times Tales" by Trigger Memory System.  It has a different picture on each page which represents a multiplication fact.  These pictures really stick with you. 

I was reminded of this the other day when Tabby was working through some math problems and in one she needed to know what 4 times 3 was.  She paused a minute and then said, "Oh yeah, 4 buttons and 3 mittens.  That's 12."

I see by the Times Tales website that there is a Times Tales dvd available now too.  If you want to see how everything works - and learn your 9s times table! - watch this YouTube video.  This company also has a number of other really interesting products (see here) including "Learning Games in  a Bag."  (I've always been curious about those but have never tried them.  If you have - I'd love to hear what you thought of them.)

Below are a few random pictures from our recent homeschool days.  I've mentioned that we love studying birds.   A week or so ago, Tabby noticed a female cardinal laying on our tiny deck.  We were afraid one of the dogs might get her.  So Tabby put on gloves, and then went out and picked her up.  She really enjoyed holding the bird, and then put her in the flower garden.  Not too much later, the bird was able to fly off.



Here Hunter is working in his math workbook (he's a "workbook type") and Solomon is busy learning by holding things and chewing on them.


(Hunter likes the Mathematical Reasoning workbooks from the Critical Thinking Company.  He's on book 2.)

Time for piano practice!


After reading some Bible stories which mentioned Jerusalem, Hunter decided he must build the walls of Jerusalem:



Finally, trying to make breakfast lately was getting tricky.  Solomon no longer wants to sit in the Bumbo seat and I just can't hold him while trying to get the food prepared.  If I sit him on the floor, I have to stop too often to put him back in siting position.  So, Hunter now slowly pushes him around the house in the stroller.  As long as he's moving, Solomon is happy!  And Hunter likes pushing strollers anyway because they have ... wheels! 


"You have put gladness in my heart . . . ." - Psalm 4:7a

Sunday, March 24, 2013

Lily bulbs and a new Trisomy Awareness billboard

Yipee!  We have two Easter lilies growing in our yard!  Before we moved last year, Tabby dug up all the lily bulbs from that house.  I replanted the Easter lily bulbs in the fall.  I think we had seven.  Two are now coming up. 

Yesterday I finally replanted all the bulbs from Lilly's memorial garden.  Plus I added in a few new lily bulbs.  I hope they begin to grow soon.  I also bought some lily-of-the-valley and Solmon's seal plants for the front of the house.  But time and weather have not permitted me to plant those yet.

I know gardening is therapy for a lot of people.  For me it's currently a race.  When Solomon falls asleep for a nap, I grab the baby monitor and run outside and see how much I can get done as fast as possible before he wakes up.  Whew!

Giuliana's mom has worked hard to get more billboards put up in their town up north to raise Trisomy awareness.  (She did a wonderful one about the time of Giuliana's second birthday.  You can see that one here.)  Here is the latest billboard that just went up:



Doesn't Giuliana look like a happy little girl?  (She has mosaic T--18)  You can read her blogpost about it here.  What a wonderful way to spread awareness as most people have not heard of Trisomy 18 or 13.

We are finally wrapping up our Lilly Memorial Project with our donations to angel families at the hospital.  Tabby made 17 special journals for me.  She covered boring composition books with pretty scrapbooking paper.






I had to order material to make two more bags and Lord willing, it will come in the next few days.  Right now I have 15 bags finished.  Hunter helped with the machine sewing part of most of them.  He loves any kind of machine.  So he enjoyed pushing the sewing machine's foot pedal for me:



Solomon was often sitting on the floor while we were sewing.  I put pillows behind him and give him a few toys.  In between sewing bags I usually had to jump up and sit him back up as he would have fallen to one side and be kicking his arms and legs like a little bug on its back.  It made everything take longer, but I guess he wanted to feel he was contributing.

"Oh give thanks to the Lord for He is good, His mercy endures forever." - Psalm 118:1