Eye Surgery

Doc had eye surgery today to fix his crossed eyes.  You'd think that having experienced a child (or two) having had surgery before that it wouldn't be as hard.  Well, you'd guess wrong.  I even thought that until last night, and then early morning came, and then we were driving caravan style to the hospital (since hubby had to head to work as soon as Doc was in recovery), and then we were checking in, and then being taken back to "triage", and then having the anesthesiologist take your baby boy back, and then sitting in the waiting room watching the screen and seeing the "in surgery" highlighted beside your child's ID number, then I realized that no matter how common or rare the surgery, when it's your child it doesn't matter and it's just hard.

But God answered our prayers the way we hoped He might.  Doc did "perfectly" according to the doctor and nurse.  The only trouble was getting the IV in, but that is to be expected with tiny, pudgy arms - and he was asleep for that.  We arrived around 6:10am and were leaving around 10:30am.  He's sleeping now, a little fussy when he was awake a short while ago, but other than that doing great.  Thank you Jesus!!!! 

Toothless

Isn't he cute?  He lost 2 teeth yesterday, pulled them out himself during dinner (it hurt too much to eat prior to).  That makes a total of 5 baby teeth lost.  Big oops on part of the tooth fairy though . . . somehow after staying up too late to watch Harry Potter he/she managed to forget about collecting said teeth.  OOPS.  

It's okay to weep.

I think it's okay to weep over what has been lost.


http://chantrynotes.wordpress.com/2012/11/07/how-i-absorbed-three-punches-and-stood-up-anyway/

I hope I can wake up tomorrow, get up off the mat, and continue working as working for the Lord.  Here's to hard work, perseverance, patient endurance and everything else we're going to need to get by.  Come, Lord Jesus.

My Song for Now.

Do you ever feel like there is a specific song (or two) that just describe your needs/wants/desires/life for the time being?  It speaks to you and speaks for you.  This isn't always the case but right now I am drawn to, love listening to, and feel connected to what the lyrics are in Jimmy Needham's If I Ever Needed Grace.

I'd like to share them here.  Now.

Verse 1
It still feels like yesterday
A lifetime of empty days
My hungry heart was desperate for a meal
I feasted on the Bread of Life
Forgiveness pierced me like a knife
Your breath filled up my lungs and I could feel
I was broke and all I could say was

Chorus
If I ever needed grace, it's now
You are strong when I am weak, somehow
I am weak enough to see
I need You to cover me
If I ever needed grace, it's now

Verse 2
I met the woman of my dreams
Wanted to give her everything
Then fear came like a thief in the night
But my journal pages prophesy
That one day I'd make her my bride
Soon my best friend was wearing white
With our lives ahead all I could say was

Chorus
If I ever needed grace, it's now
You are strong when I am weak, somehow
I am weak enough to see
I need You to cover me
If I ever needed grace, it's now

Bridge
In every joy and pain
Whatever comes my way
God I need Your grace

Verse 3
Nine short months 'til she arrived
Little hands and lions eyes
And I'm so scared I don't have what it takes
But I hear Your voice Sunday morning
Father give me eyes to see
All I need's the power of Your name

Chorus
If I ever needed grace, it's now
You are strong when I am weak, somehow
I am weak enough to see
I need You to cover me
If I ever needed grace
If I ever needed grace
If I ever needed grace, it's now

Happy 1st Birthday!

I haven't had one extra minute to spare lately, the kids have been sick the past two weeks, starting and ending with colds with the stomach flu in between but last Thursday, October 25 our little pumpkin, Doc, turned one year old!  We celebrated yesterday with a small party, just family.

Here is Doc a few weeks ago, happy boy helping me fold the diapers.

Here he is at his party, he was beyond ready for a nap at this point but stopped crying when we started singing "Happy Birthday" to him, then he went  down for a nap and slept through the rest of his party. 

At one year old he is still riding and being carried around in his infant carseat, he's been in 6-9 month clothes for about a month now, he can't sit up without support yet or get up on hands and knees in 4-point position.  He will turn pages of large board books, roll to get where he wants to be or explore, prefers his Mommy, brings us lots of joy, and is an incredible blessing.

Happy Birthday Doc!

Update: Took Doc to the doctor's today because he's had his cold for so long, and although this isn't his official well-child visit he measured in at 16lb 12.6 oz and 26 inches long.  Such a little peanut!  He has bronchial-pneumonia and is on antibiotic now.  His official well-child visit is in about another month (if I remember correctly), since he has to have a pre-op appointment a month before his eye surgery they're just going to combine the two.

My Birthday Cake

Hubby did it again!  He made my birthday cake for our celebration tomorrow at my parent's house.  Yup - I love moose, fall colors, blue . . . Great job Dear!  I love it!  :) 

Here is Hubby (boyfriend at the time) holding the first cake he ever made me - October 4, 2000, he brought it to the CCC Girl's House which is where I lived from my sophomore year until we got married in January of 2002.

He made me this cake for my birthday in 2001 - It's the Appalachian Trail, which we hiked with my Dad the previous two summers (a week at a time.)

(In both pictures we're in plaid flannel - can't tell we were students up in da UP, eh?)

PBS

Wow - such a BIG deal over PBS.  If it's that important to the state of raising our children then maybe we need to donate more of our own $ towards them.  I like(d) PBS when we got it but we don't anymore and SURPRISE - we're surviving.  I know, right, with 3 children to raise and teach and educate by myself (for at least all but roughly 3 hours a day).  It's downright amazing that I limit my kid's TV screen time to 30 minutes each and allow them to watch each other's shows for a total of 60 minutes a day, and we do it all without PBS.  When the digital system took over we didn't get it anymore on our TV.  There's no reason why we don't but we don't and it was/is sad.  Amazingly, my kids survive by picking out their shows on Netflix or watching the DVD they get to borrow from the library each week.  Fortunately, most of what they pick out is educational, other than Spongebob but given Big Brother only gets 30 minutes a day he's going to choose that over anything PBS offers anyhow.  Yes, I limit the time they're allowed to watch but don't dictate what they can watch (unless it's entirely too inappropriate.)  

Do so many moms rely on PBS to educate and entertain their little ones that it is going to affect the election of the next president of the United States???  Wow (did I say that already?)  It is is our job to train and raise up the children entrusted to us, not the television's or creative minds behind the broadcasting.  You know what not letting your kids watch TV when they whine produces: patience/imaginative play/discipline/self-control/etc/etc/etc.  Basically, stuff that's way more important than what they can learn from PBS.  

I'm not saying we shouldn't have it around, if we got it I know Half-pint and someday Doc would choose their shows from that station, but it shouldn't affect who we're going to vote on as our leader for the next four years.  (In case you're worried, DVR it, or invest in the DVD's.)

ArtPrize 2012

Half-pint's favorite

Big Brother's favorite

Nana's favorite, Top 5 for Half-pint and me.

Top 5 for Me.

My favorite - I loved spending time (labs) in the cedar swamps of the U.P during my college days.

I'm sure this is Doc's favorite since his P.T. created the upper right hand corner piece of this 13-piece collage.  Also one in my Top 5.

Happy Down syndrome Awareness Month!

Vacation

What do:

Empire Bluff Hiking Trail,

Pretending to be Sand People in the dunes,

Pierce Stocking Scenic Drive,

Perfecting the Yoda voice around a campfire,

GIANT s'mores,

Dirt,

Campfires, and then more campfires,

Late nights,

Cold nights,

Perfect days,

D.H. Day Campground,

Lake Michigan,

Fall color,

Sleeping Bear Heritage Trail,

Hot Coffee & Hot Cocoa,

Catching up with old friends,

And family time have in common???

All was enjoyed by us last Wednesday through Sunday at Sleeping Bear Dunes National Lakeshore.  I'm so thankful for the beautiful weather and enjoyable time we had.  Thank You God!!!  We were tech-free, even turned off my cell phone except to ring up some friends nearby, didn't even take pictures.  (I brought the wrong memory card - but I think it made it more relaxing.)

Propped-up Sitting

It seems like we've (Doc, his OT & PT, and I) have been working on this position FOREVER.  I know that is how it's always going to seem.  But, when he did it by himself this weekend for the first time it was sweet.  And again, long enough for me to take a picture even!  Good work little man!  Now that you have this down your therapists can add one extra thing to your daily regime!

Black & White

WARNING: Post is not pc!

There is a LOT of gray stuff out there.  Issues that can't be decided for sure one way or the other.  There are just countless situations which require different and difficult decisions.  But there are still some black and white issues.  With the upcoming election I'd like to go over some of these black and white issues.  These apply to those who believe and have put their trust in God, the One and Only, and believe and trust that the Bible is His infallible Word.  (If you don't believe in God or trust the Bible as His Word, this will mean nothing to you, FYI).

Marriage:
Genesis 1:27-28
"So God created mankind in his own image, in the image of God he created them; male and female he created them.  God blessed them and said to them, 'Be fruitful and increase in number; fill the earth and subdue it.  Rule over the fish in the sea and the birds in the sky and over every living creature that moves on the ground.'"

Genesis 2:24
"That is why a man leaves his father and mother and is united to his wife, and they become one flesh."

1 Corinthians 7:2
"But since sexual immorality is occurring, each man should have sexual relations with his own wife, and each woman with her own husband."

Romans 1:26-27
"Because of this, God gave them over to shameful lusts.  Even their women exchanged natural sexual relations for unnatural ones.  In the same way the men also abandoned natural relations with women and were inflamed with lust for one another.  Men committed shameful acts with other men, and received in themselves the due penalty for their error."

Children:
Psalm 127:3
"Children are a heritage from the LORD, offspring a reward from him."

Psalm 139:13-15
"For you created my inmost being; you knit me together in my mother's womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in that secret place, when I was woven together in the depths of the earth."

Jeremiah 1:5
"Before I formed you in the womb I knew you . . ."

Exodus 20:13
"You shall not murder."

The Economy: don't let the sorry state of our economy deter you from voting morally.
Hebrews 13:5
"Keep your lives free from the love of money and be content with what you have, because God has said, 'Never will I leave you; never will I forsake you.'"

Matthew 6:25-27
"'Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear.  Is not life more than food, and the body more than clothes?  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them.  Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life?"

Haters:
1 John 3:15
"Anyone who hates a brother or sister is a murderer, and you know that no murderer has eternal life residing in him."

John 15:19
"'If you belonged to the world, it would love you as its own.  As it is, you do not belong to the world, but I have chosen you out of the world.  That is why the world hates you.'"

Remember:
Hebrews 13:6
"So we say with confidence, 'The Lord is my helper; I will not be afraid.  What can mere mortals do to me?'"

Romans 13:1
"Let everyone be subject to the governing authorities, for there is no authority except that which God has established.  The authorities that exist have been established by God."

AND

Ecclesiastes 1:9
"What has been will be again, what has been done will be done again; there is nothing new under the sun."

(If you don't believe me look it up for yourself.  I encourage you to study these truths.  These are quoted from the NIV and all emphasis is mine.)

2012-2013 School Year

Half-pint and Big Brother posing for their 2012-2013 school year pics!

I thought I would share what curriculum we're using this year, because I haven't posted anything in awhile and although I still don't have one extra minute today I thought this blog needed a new post.

Big Brother is doing: Apologia Press Science: Astronomy

Apologia Press: Who is God?

Sing Spell Read and Write (phonics)

Story of the World (history)

Horizons Math 1

First Language Lessons (Level 1) (grammar)

and Expedition Earth (by Erica at confessionsofahomeschooler.com) (geography)

My "teeny tot" aka Half-Pint will be doing some of The Letter of The Week (also by Erica at confessionsofahomeschooler.com) as well as listening in on any of Big Brother's school that she cares too.

"nope . . .nope . . .nope . . .YEP!"

I'm quoting a friend and fellow Ds momma in my title.  A few days ago her facebook status was such:

"The Down Syndrome Community continues to bless me. Tonight while walking down the Grand Haven Pier with 'A' after I dropped the two bigs at Church Kamp, we met an amazing husband and wife who stopped to chat with us! They also have a girl with Ds who is 26. No other community that I know of will sit down with a complete stranger and open up they way we do. They offered lots of stories and laughs. For about 35 min they stayed and chatted. A Ds Momma looks at every childs eye and in her mind says, "nope... nope... nope... YEP!" We look for each other everywhere we go. It isn't always a 35 min chat but often a smile, hug or a wave at least. I get lots of women sharing their stories with me. I truly love all the stories. They keep me going. They let me know I am not alone and to keep going, fighting for everything we are doing for 'A'".

I have recently started a new job.  One thing, among many, that I LOVE about this job is seeing this young woman that comes and works out.  I see her walk by the glass windows of my room as she's walking from the weight room to cardio or to use the bathroom, I see her walk by a couple of times.  She always has water, and a towel, and YEP she has Down syndrome.  I love it.  I love that despite what doctors are going to tell you, what genetic counselors are going to say, despite what the world in general thinks should happen to fetuses with one extra 21st chromosome people with Ds are more like someone without the one extra chromosome than different.  It also gives me hope for Doc.  When I'm holding Doc and she walks by, I whisper to him "see, don't believe what people are going to say about you, if you want to come and workout at the gym you can."

Last week I worked the morning shift and signed up for the evening shift too since hubby was out of town and the kids and I didn't have much else planned.  But instead of driving home for a few hours we decided to have a picnic at Meijer Gardens.  I packed lunches and planned on just buying a snack or dinner (depending on hunger level prior to reporting back to work) but as "chance" would have it I missed my exit and on finding my way to the Gardens by way of a different route we passed a McD's with a playland.  Now, I don't know about you but my kids love to eat at McD's, especially if there's a playland - and they love exploring new ones so I decided we'd stop for lunch and save our packed pb/j's for dinner.  The kids hadn't finished long before a mother and son came in with their lunch tray in hand.  I sort of noticed the boy, and thought just maybe he had Ds too.  It was actually very hard to tell, the reason my interest peaked was the way he was so flexible as he sat down to take his shoes off and put on socks.  I didn't see distinct almond-shaped eyes like Doc and he ran around the playland just like all the other kids and sat down at the table for breaks to sip on his soda and eat his happy meal.  But I eventually decided that YEP, he's like my boy!  And like most in the Ds community his mother stopped by my table to take a peek at Matthew and confirmed my suspicions.  It was a blessing to my heart - the little "hello" from one understanding mom to another and to see the cute guy running around crazy like the rest of the kids there.

Doc has potential.  Lots of it.  LOTS.  "Don't Dis (his) Ability."

One Extra Chromosome

I'm going through Beth Moore's Revelation study right now, I'm (we're) almost done.  I'm doing it with a group of ladies at a local church.  It's awesome, if you get the opportunity DO IT!  Seriously, Just Do It!

Tonight Beth Moore went over chapter 19.  FINALLY a chapter to celebrate.  A reprieve from the depressing state of the world that is still to come.  If you think it's bad now, just wait.  I mean, think like the last Harry Potter movie, but REAL.  That's the picture that comes to mind when reading about the demons and darkness and evil that will be so prevalent.  But anyways, back to tonight, it was a happy study.  The wedding feast.  Jesus coming, the Lord of lords and King of kings, riding on his white steed and his armies behind him.  Just amazing.  I can't wait!  Revelation 19:7 says "Let us rejoice and be glad and give him glory."  Beth Moore went on to describe what glad means there.  When translated it's not like "the officer didn't give me a ticket" glad, or "my favorite ice cream is on sale" glad, or even "my kids are getting along today" glad - it's a JUMP UP AND DOWN super duper KiNd of GLAD!  Do you know what I mean?  It's like "GggggLllllllAaaaaaaD" (yes, I'm quoting Beth Moore now).  She asked, "do you remember the last time you were so glad you jumped up and down?"  I smiled, I immediately remembered a few times in the last 6 years.  The first one I can remember is when the pregnancy test was positive for my first-born.  I was in the kitchen, I blinked a few times so see if I was reading it right, and then I jumped up and down right there!  The second time I can distinctly remember was when the genetics counselor from the high-risk ob office called with the amnio results for our youngest.  She said he does have trisomy 21 or what is called Down syndrome.  I jumped up and down and was glad.  GggggLlllllAaaaaD.  That may sound strange.  Let me explain: our second was still born with tetrasomy 9p and because of that was too ill to live on earth for very long.  When an abnormality was shown on Doc's (our youngest) ultrasound too many sad thoughts filled my head and had me google-diagnosing him for at least a week.  I wanted to make sure there was something else other than tetrasomy 9p that would cause him to have an abnormality.  There were, and most of them were fatal also.  I was hoping and praying that it was an extra 21st chromosome, or nothing, since I felt those were the only two choices I had that would give him a chance to live (short of a miracle from God).  So yes, when I heard he had Down syndrome I was glad.  So glad I jumped up and down.

Now, why everyone else we told had some disappointment to their voice I don't know.  God has wonderfully created every human, ever, and Doc is no exception.  I thank God for him every day.  It's not as common for God to make a baby with an extra chromosome and this time when He did He entrusted him to us.  :)  For this I am thankful.  And blessed.  I love this little man soooo much.  Just like I love his three older siblings.  I feel totally inadequate to be entrusted with raising him, as I also do with his older brother and sister but that's probably all part of God's perfect plan of getting me to rely on Him more and more every day without ever not.  I love all that his one extra chromosome brings to him, and to us.

A New Chapter

One extra.  This new "chapter" in the blog-o-sphere is one extra thing I will do, if there's one extra hour in the day.  It is no longer to chronicle the "new normal" we sought after our second-born was taken into the arms of Jesus at 32 weeks gestation, or the struggle to get pregnant again, craniosynostosis, or the scary news that our fourth might also have serious health issues.  This blog is to chronicle the ups and downs and sideways of our family now that God has so richly blessed us with 4 beautiful children, one of whom we'll meet at a later date, one who is starting first grade at home, one who is still wearing a helmet 2 years after surgery, and one who has one extra 21st chromosome, and a leg issue.  We have our own set of challenges but God has proven to be there with us e-v-e-r-y step of the way.

One extra.  This is also my hope that there is always room in our home for one extra.  Always room at our dinner table for one extra.  Always room in our hearts for just one extra, whatever that may be.  I hope that you - the reader - will be able to see God at work in my life and in the life of my family.  I am a work in progress and definitely not perfect but I hope you can see through my weaknesses a perfect and Holy God who continues to keep me going.