Having a Trisomy 18 sibling

Aaron is a little boy that is 3 years old and has Trisomy 18.  (See his blog here.)  Recently his mama put together a video of pictures of Trisomy children and their siblings.  There are several pictures of Lilly with Tabby and/or Hunter in it, all within the first 20 seconds of the video.  (Those same pictures are below.)  Click this link to watch this sweet video:  https://www.youtube.com/watch?v=_W-fqVHTJng (It is entitled "Trisomy Siblings Ain't Heavy")  So many happy, loving siblings!

Over the past few years, I've been asked a couple times if Tabby and Hunter were OK with having Lilly as a sister.  That didn't it seem "unfair" to them to have a sister "like that."  One woman that was pregnant with a Trisomy 18 baby emailed me last year and said that she was being pressured to abort her baby because people were telling her that it would be unfair to her current children and would cause them many problems in life.  (I have to wonder if any of those pressuring people had any evidence at all.)

My answer is "NO."  Tabby and Hunter's lives were made BETTER by having Lilly as a sister.  Their character was improved and they both learned compassion for special needs people.  They learned that "different" is not "bad" - that God doesn't make mistakes.  They both still miss Lilly and we all still talk about her with frequency.  When a stranger asks one of them about how many siblings they have, both always include Lilly.

There were a few times during Lilly's life when Tabby and Hunter each experienced frustration that we couldn't do something or I couldn't help them at the particular instance they wanted help, because of Lilly.  But neither resented her for it.

Our conclusion:  having a special needs sibling is a BLESSING, not a burden.

Peep! First egg, goat milk soap, and Solomon walking video

First, I wanted to share a short video of Solomon walking.  A number of relatives have asked me to post one.  (If you are reading this post via e-mail you may have to click into the blog to view it, if you are interested.)  I took this video after Solomon's bath the other night:

Last evening I heard Tabby yelling something as she burst into the house.  I was afraid something had happened to one of the animals but then she excitedly held out her hand.  The first chicken egg!  And most likely laid by a buff named Friendly.  (You can see a picture of Friendly at Tabby's blog, The Goat Chick, here.)   Tabby ate the egg this morning for breakfast and declared it "delicious!"

The big goat in this picture is Christa, the nanny that Tabby milks each morning:

Last week, Tabby and I finally attempted to make goat milk soap using goat milk courtesy of Christa.  I had done some online research trying to determine which soap recipe to use but it was rather overwhelming because I had never made soap before and felt clueless.  I finally settled on this recipe from the Soap Making Resource website.  The owner seems to be a soap making fanatic so I felt comfortable following his instructions.  :)  I ordered the goat milk soap kit.  It came with step-by-step instructions that were easy to follow.  Here are our supplies:

 Melting the oils (olive, palm kernel, rice bran, coconut, palm, castor) and shea butter:

 

This is the goat milk mixed with lye.  (Guess what it is no LIE that LYE burns.  We used gloves at first but later we got a bit cocky and didn't use them and had a little lye splash on our skin. Ouch!)

Here is the finished soap mixture (everything above combined plus eucalyptus and spearmint essential oils added in) poured into an acrylic mold.  (Supposed to be better for goat milk soap than wood because the soap can stay cooler):

About a day later I popped the soap out.  It was pretty soft.  It is now on a rack for about 6 weeks to cure.  (SIX weeks!  We're so anxious to try it now!)

I really enjoyed the soap making process and plan to make another batch very soon.  Tabby and I would like to sell the soap.  Tabby came up with this name:  "The Goat Chick's Utterly Natural Goat Milk Soap."  Thanks Christa!   

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." - James 1:17

The standing napper Plus 4-H request

For close to two weeks now, Solomon has been continuing to stand or sit in his crib for his naps.  He will not lay down!  I keep thinking if he gets tired enough, he will.  But he just stands or sits quietly - holding onto the bards - and dozes off and on.  I am praying this phase ends quickly because he's so tired and rather cranky by the end of the day.  I took this little video this morning, of him standing while sleeping.  It took it on the video monitor:

 I have been looking into 4-H clubs as a possible activity for the kids starting this fall.  I don't know a lot about it.  My husband participated in 4-H as a child, but all he remembers is his wining bird feeder entry at the fair and a near drowning experience he had!  If you ever participated in a group - as a member or leader - I would love to hear from you!  What kinds of activities did you do?  What did you like best?  Least?  Please leave a comment or email me.  Thank you!



New goat activity this past Saturday:  learn to trim goat hooves!  It's definitely not as quick as cutting fingernails, and takes two people.  At least for us.  The amazing Mrs. L (the goats owner) can easily do it by herself.

Trim and clean hooves mean healthy hooves/feet for goats!

Finally, as there are just a few days left for our fundraiser, I want to share the last two Thirty One products I have.  The first is the "your way rectangle".  It is a handy box with a clear PVC window on one side.  I have one filled up with books by my nightstand.  (I like to have a bunch of books going at once.)  I've also used them to stack homeschool materials to review.  They're really handy and fold flat for storage!

Finally, I have the "keep-it caddy" which I keep under my desk.  It has my blog idea book, Bible, commonplace book, notebook of books I have read, and scripture journal.  Very handy to grab and tote anywhere I want to go with it.

I've accumulated my Thirty One products through some wonderful sales.  :)

JOIN US FOR OUR FUNDRAISER THROUGH JULY 27TH! I am holding a Thirty One gifts fundraiser this month. All earnings will be split between SOFT and my own Lilly Memorial Project. Go to our party page by clicking https://www.mythirtyone.com/NikkiHuffman/ , click on "My Parties" on the left, and then clicking on "The Lilly Memorial Projects Thirty-One Fundraiser." THANK YOU!

Tabby on Piano: And Can It Be That I Should Gain?

Several things to briefly share today and only a few minutes to do so!

First, Cindy-the-soap-nut-lady had a good post the other day about using a soap nut product to clean windows - see her post here.  (My post on using soap nuts for laundry detergent is here.)  Don't forget - if you order any soap nut products from Cindy, use the code LILLY10 to get a 10% discount. :)

Second, have you ever tried oil pulling?  This is swishing coconut oil in your mouth for about 15 minutes and then spitting it out.  It pulls all sorts of toxins out of your mouth and even your body!  You can read a fascinating summary of the benefits in a Samaritan Ministries newsletter article here.  Recently Trina Holden shared a post about oil pulling on her blog and how her family has been able to heal cavities by oil pulling.  I'm inspired enough now to make oil pulling a habit. (I thought it would make my mouth really tired but it didn't.)

Next, Tabby has become an awesome goat milker!  She is so faithful to the job I haven't even gotten a chance to try it yet.

Solomon, who just turned 9 months last Saturday, loves pushing his activity walker though he hasn't figured out how to turn yet:

Frank and Lilly were among the fathers and daughters pictured on the SOFT website for Father's Day.  The collage is still up - they are on the "5th page" of it with this picture:

Sigh.  That picture makes me miss holding Lilly's little body.


Seems I like so many hymns written by Charles Wesley.  I am so thankful for God's AMAZING LOVE.  Here is Tabby playing "And Can it be That I Should Gain?" 

And Can It Be That I Should Gain?   by Charles Wesley

And can it be that I should gain
An interest in the Savior’s blood?
Died He for me, who caused His pain—
For me, who Him to death pursued?
Amazing love! How can it be,
That Thou, my God, shouldst die for me?

Amazing love! How can it be,
That Thou, my God, shouldst die for me?

 ’Tis mystery all: th’Immortal dies:
Who can explore His strange design?
In vain the firstborn seraph tries
To sound the depths of love divine.
’Tis mercy all! Let earth adore,
Let angel minds inquire no more.

Amazing love! How can it be,
That Thou, my God, shouldst die for me?

He left His Father’s throne above
So free, so infinite His grace—
Emptied Himself of all but love,
And bled for Adam’s helpless race:
’Tis mercy all, immense and free,
For O my God, it found out me!

Amazing love! How can it be,
That Thou, my God, shouldst die for me?

Long my imprisoned spirit lay,
Fast bound in sin and nature’s night;
Thine eye diffused a quickening ray—
I woke, the dungeon flamed with light;
My chains fell off, my heart was free,
I rose, went forth, and followed Thee.
 
Amazing love! How can it be,
That Thou, my God, shouldst die for me?

Still the small inward voice I hear,
That whispers all my sins forgiven;
Still the atoning blood is near,
That quenched the wrath of hostile Heaven.
I feel the life His wounds impart;
I feel the Savior in my heart.
 
Amazing love! How can it be,
That Thou, my God, shouldst die for me?
 
No condemnation now I dread;
Jesus, and all in Him, is mine;
Alive in Him, my living Head,
And clothed in righteousness divine,
Bold I approach th’eternal throne,
And claim the crown, through Christ my own.
 
Amazing love! How can it be,
That Thou, my God, shouldst die for me?

A Lilly memorial video by her big sister

Tabby created this video of Lilly on Shutterfly.  The music really adds a sweet touch.

Today is January 4th.  When Lilly was alive, we celebrated every month she lived on the 4th of each month.  We continued to do so after she passed away.  My husband wears his Lilly colored tie to work.  At home the kids and I decorate Lilly's memorial tree.  This month marks one year since we've been decorating her tree, each month with a different theme.  January is angel month so I brought down the box of angel ornaments from last year.  We have some new additions this year - ornaments we received since last January.  I am anxious to put them all up tonight.  For some reason I am finding it very comforting to be done with the first year after Lilly and to once again get these ornaments out.  It's hard to explain but it's nice to feel comfort in surprising places.

"For it is written: 'He will command his angels concerning you to guard you carefully;" - Luke 4:10

"How Firm a Foundation"

Today T. asked me to record her playing "How Firm a Foundation" on the piano.  This is her fourth video in the "Lilly funeral music" series she is doing. 

I had to fight back tears while recording this today.  (Those tears that "pop up out of nowhere!")  I think "How Firm a Foundation" was Lilly's very favorite song.  My husband discovered this when she was first hospitalized, in September 2010.  When I was holding Lilly and she was upset, I would hold her tight against me and hum this song and it almost always calmed her down. 

On the night Lilly died, when the paramedics got through trying to revive her, they left me alone in the ambulance with her.  I carefully redressed her, wrapped her in her blanket, and then held her and found myself rocking her and humming this song.  This time it calmed ME down in a way.  I knew she was with God and was happy to be there.

OK ... enough!  I don't want to cry again.  In the video, the plaque is entitled "The Reunion Heart" and we received it from Giuliana's family shortly after Lilly died.  The words are so sweet:

The Reunion Heart

Since Heaven has become your home
I sometimes feel I'm so alone;
and though we now are far apart
you hold a big piece of my heart.

I never knew how much I'd grieve
when it was time for you to leave,
or just how much my heart would ache
from that one fragment you would take.

God lets this tender hole remain
reminding me we'll meet again,
and one day all the pain will cease
when He restores this missing piece.

He'll turn to joy my every tear
with thoughts of you I hold so dear,
and they'll become my special way
to treasure our Reunion Day.

Finally, here are the lyrics to the hymn "How Firm a Foundation":

How firm a foundation, ye saints of the Lord,
is laid for your faith in his excellent word!
What more can he say than to you he hath said,
to you who for refuge to Jesus have fled?

Fear not, I am with thee, O be not dismayed,
for I am thy God and will still give thee aid;
I'll strengthen and help thee, and cause thee to stand
upheld by my righteous, omnipotent hand.

When through deep waters I call thee to go,
the rivers of woe shall not thee overflow;
for I will be with thee, thy troubles to bless,
and sanctify to thee thy deepest distress.

When through fiery trials thy pathways shall lie,
my grace, all-sufficient, shall be thy supply;
the flame shall not hurt thee; I only design
thy dross to consume, and thy gold to refine.
I think verse 2 is my favorite right now.

"Amazing Grace"

T. continues to learn how to play the songs we sung at Lilly's funeral on the piano.  Today's video is of her playing "Amazing Grace."  (This is H's favorite hymn.) 

You can see video of her playing "Lily of the Valley" here and "My Jesus I Love Thee" here.
T. continues to be heartbroken over the loss of Firecracker, her fish.  Yesterday she bought a new fish to try and quickly fill the void.  She said it's dumb to be so sad about a fish, when she lost her baby sister and grandpa.  But she just is.  I told her that it is OK to grieve her fish!  She asked me to post a picture of Peacock, her new Crowntail Betta fish:

"Amazing Grace" - by John Newton

Amazing Grace, how sweet the sound,
That saved a wretch like me....
I once was lost but now am found,
Was blind, but now, I see.

T'was Grace that taught...
my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear...
the hour I first believed.

Through many dangers, toils and snares...
we have already come.
T'was Grace that brought us safe thus far...
and Grace will lead us home.

The Lord has promised good to me...
His word my hope secures.
He will my shield and portion be...
as long as life endures.

When we've been here ten thousand years...
bright shining as the sun.
We've no less days to sing God's praise...
then when we've first begun.

Sweet Lilly video

Remembering Lilly and her Daddy on this Father's Day.  (Lilly is about 4 months old.)  She always smiled the quickest for him:

I was searching for a photo to make a thank you card with today, and I came across this sweet video of Lilly talking to her Daddy and me.  She was about 3 months old.  I sure miss holding her and hearing her little voice.  It was 6 months ago this past Friday when she went Home.

Last week our family was blessed to vacation in Chincoteague, Virgina.  (Think wild ponies and the Misty book series!)  LillyBear went with us and also enjoyed sightseeing.  I will post pictures of LillyBear's adventures asap.

Lilly's first Valentines Day in heaven

Happy Valentine's Day my little Lilly in heaven! We love you so much and miss you! But we know you are so happy beyond measure. Remember these pictures from last Valentine's Day? Ha! No NG-tube anymore! And no g-tube! Nothing at all sweetheart - you are perfect! And what could be better than being in the arms of Jesus? Even Mamma can't compete with Jesus! We can't wait to see you again Lilly! In the meantime - never forget how much your family loves you!

To see some more pictures of Lilly last Valentine's Day, click here. Lilly was 7 months old.

I had to smile as I listened to myself talk on the below video. Lilly never did get any teeth! She would have spells of heavy drooling and chewing. I could see top and bottom teeth under her gums, but no tooth every broke through.

Oh well. Maybe I'll see her with a mouth full of teeth in heaven! I'm so curious as to what everything will be like!

"There will be no more night. They will not need the light of a lamp or the light of the sun, for the Lord God will give them light . . . ." - Revelation 22:5

Various videos

One of Lilly's little Trisomy 18 friends, who is still on earth, is 3 year old Faith. Her parents were blessed to receive good advice early on in Faith's life from Rick Santorum. The Detroit Free Press has a good article and video about this in today's edition. You can read the article and watch the video here: http://www.freep.com/article/20120213/NEWS05/202130359/Rick-Santorum-s-advice-helps-metro-Detroit-family-with-Trisomy-18-child

Anyone who has read this blog for awhile knows that Lilly loved to eat coconut oil by mouth. The main reason I gave it to her was for the calories and immune boosting benefits. But there are also quite a number of other health benefits which you can read about here. I was interested to find out yesterday that coconut oil can really help with Alzheimers. You can see a video about that here. I guess that Alzheimers would have been one problem Lilly would never have had to worry about!

In doing a photo project this weekend, I came across a couple Lilly videos that I had forgotten about. They were so sweet to see. I was smiling with tears in my eyes as I watched. I thought I would share one here, that I don't think I ever posted. The video is from March 2011 and Lilly was 8 months old:

Now I need to get all our videos backed up on DVD or something so that we don't lose them if the computer crashes!

Video: Blowing raspberries

Here's a video of Lilly from last night. She was having a great time blowing raspberries!

Video: Lilly laughing

We have finally been able to get Lilly laughing on video. Last night, she just got so tickled at her stuffed caterpillar named Hank. First when I was holding her, and then my husband. Here she is with her funny little laugh: