My Henry | My Heart | My Holland

         It's been a month, tomorrow will make it six weeks to be exact, since we have been in Holland. Well, not literally, but since we had our son Henry. I can't tell you that I am over the fact that he has Down syndrome but I can tell you that it doesn't hurt as badly as the day we found out. Oh, it still hurts, don't misunderstand. I don't know if I'll fully ever be over it but I think that "getting over it" isn't necessarily the point. It's accepting him the way he is. It's understanding the fact that just because he's different doesn't mean he's bad.
             In the short time we've had Henry he has taught me a thing or two. He's taught me that my expectations are different than assumptions. I expected Henry to be distant and not interact with me, but I was merely assuming that he wouldn't be like any other baby. I was wrong. He looks more deeply into my eyes when I talk and read to him than either of my other boys. He has studied my face and memorized my voice. He knows when I'm lying next to him and his breathing speeds up and he kicks his legs as he's excited Mommy's there and then his breathing slows as he relaxes and turns his face toward mine. He's taught me not to assume he's incapable of relationships.
         He's taught me perseverance, when he couldn't nurse in the beginning. I wanted to throw in the towel, but I didn't. He's nursing much much better with a lot more ease now. He's taught me that when you've been trying for four and five weeks to accomplish something- don't give up- because you could be one week away from success! I wonder if he'll be that determined to accomplish his goals? I bet he will!
         Henry is the sweetest, easiest baby to take care of. He only cries when he's really really hungry or has a dirty diaper. That's it! I'm very blessed with that as my second son was completely the opposite! (But he's very fun now!)
         So we're in Holland looking around. We've kind of caught our breath and now we can begin learning the language and start looking for all the neat things that are exclusive to Holland alone...the windmills...the tulips...the Rembrandts!! 

God Didn't Stop...

God is truly amazing to me.
The verse in the Bible that tells us the God's ways are not our ways and His thoughts are higher than our thoughts...has been made so real to me this year.

When God made the earth, He didn't stop with the oceans and mountains and valleys... He added animals and humans... He added life.

When God created life He didn't stop there.  He created marriages...families... and with that He created relationships.  When God created these families He also created friendships.  Through Jesus, He taught the value in family and friends and that we should bare each others burdens and  love one another as we love ourselves.  Through merely creating people, which is miraculous and ingenious in itself,  He didn't stop there.  He went on further and developed personal, intimate attachments between those people. 

God created the early morning dew and the summer rain for the dry, parched ground.  He created the fruits of the trees and plants for our food.  When He created the oceans and the sunsets and the eagles that fly around the mountain tops, He didn't stop there.  He created You and I...to enjoy its beauty.

When we separated ourselves far from Him, He created a bridge.  He sent His Son Jesus to pay for our sin.  A price Jesus didn't have to pay, but He did so willingly.  He gave up His life, shed His blood, so that we could have the opportunity to be reunited with God, and to one day live in heaven with Him.

God could have stopped at letting us live our life, but He didn't.  He gave us memory.  He gave us the ability to keep the precious moments we've lived by allowing us to have a file in our minds to look back on.  When those friends and family members are no longer with us, the memories still are... they linger...the past is not forgotten...

God could have stopped in many many areas of the world.  But it's amazing to me that He kept blessing.  When man didn't deserve a single blessing, He gave one anyway.  He gave all.

The Saturday, Sunday Slow Down!

Saturday was a great day! We started off drinking coffee outside while the sun came up reading our Bibles and the Sunday School lesson for today. When Charlie woke up at 8am, we packed him up and went for a 2 hours bike ride! Destinations included the Dutch Bakery where we parked on a bench and had breakfast! Then off to see the new Elementary school, Mt Healthy South Elem. Then we came back home and were in need of a nap! After a few sweet, fresh peaches of course, to balance out the donuts! :) The rest of the day consisted off vegging out and watching a couple movies we have been wanting to see but never had the time. It was a day of total rest, one like we have not had in a very long time! Charlie has just gotten over 6 days of diarrhea that felt like 12 and now is battling allergies, I think. So, it was good to keep him home. But we did travel to Max and Erma's for a bite and then to Sam's for more diapers and wipes. The diarrhea-fest wiped us out of them completely.

So, Sunday. Church. Eat. Sleep. NASCAR. Orchestra practice for Jeff. Church. Sleep. :) Eventful yet rejuvenating at the same time!

4 Months and Famous?

An Our365 email  popped up this morning.  Henry is 19 weeks old... 4 months 1 week and 5 days...
Though it feels like he's been a part of our family forever.

This weeks Our365 email was rather....stupid.  It was about if Henry has what it takes to be famous or not.
First off, it only made me think right away of his limitations...but then I remembered Teddy Kremer and I realized that Henry will have all kinds of opportunities in life...maybe different ones than Charlie and Wesley, but still his very own, neat opportunities.  God must have some purpose for Henry, otherwise He would have made him with 46 chromosomes like the rest of us in this family.  But secondly, what is so great about being famous that I should see if my 4 month old has what it takes to deliver???  Um, doesn't the Bible say not to strive for fame?

Sure, I pray about the business opportunities we have.  I pray for prosperity, absolutely.  I pray for wisdom and for direction and I pray for God to show us those that need our help.  Missionaries, those who just need that stepping stone to get to a better spot in life, and those that have never been helped before...but are praying God sends someone to rescue them.

I want to be a wife, woman, and mother that hears her Lord's voice and obeys.

I want nothing more for God to say, "I'll give this task to Kelly; for I know she will obey..."

I want God to smile at me.  I want Him to know how much I love Him...and how much I want to raise Heroes for Him and not boys that will do anything for a Hollywood shout out.

I want sons that girls' moms say "Pray about that boy Suzie...he sings and plays instruments for the Lord, he always attends church, he helps out when needed, he has a servants heart, he reads his bible...and he has really godly parents!"

My sons don't need fame when they have Jesus.  If Jesus is pleased with them, then all is right in the world.  He will bless them in ways Hollywood could never fathom.  With real love.  Real hope.  Real joy.  Real riches...They may have their own little family who loves them, maybe children one day, and for Henry, well, God's got something really cool planned for him! He'll be one fantastic uncle! My future grandchildren have no idea how much they're going to love Uncle Hanky-Pank!!

I may just print this out and stick it in my Joy Journal for when it comes to pass...so I can say to Henry, "See!!! Mommy knew it would happen for you! Mommy knew you were born for something very neat and that only you could do!"

It's no secret that I love my sons.

Charlie is Mr. Personailty.  fun-loving, happy-go-lucky, and super smart!  He loves saying hi to people, asking what their first and middle names are and needs to know what everyone is doing. He loves anything silly and funny and he loves cooking and making crafts.  He remembers everything you say and every car someone drives.  He was the absolute perfect first-baby.  He's got beautiful eyes and lips and hair.  He's got such an outgoing personality that draws people to him.  He can get in trouble too...he says the darnedest things sometimes...he is all boy!

Wesley is everything sweet, adorable, and tender heart-ed.  He's easily hurt...and easily loved.  He used to be my Master of Disaster but now he is more like my Adventurous Blessing. He still gets into stuff...mostly he gets into trouble, but he is the first one to hug me, the first one to kiss me, the first to crawl into my lap and cuddle.  His smile will make your heart gush...his puffy pink lips are so cute I just could kiss them off his face.  His eyes can have the "puppy dog" effect and make you give him anything he wants. I love his fluffy hair that bounces when he runs and his cowlick in front that makes his hair stick up and to the left. :) He's all around cuteness with a kick.  I see him rebuilding engines with Daddy for that fast car.

Henry is already loved by everyone.  He has a smile and laugh that melts hearts.  He's simply adorable!  I couldn't have asked for a better baby.  Sometimes we see the yellow raincoat...sometimes we don't...But we always see Henry!

I don't want fame for my boys...but I do want them to leave a legacy behind for God...
Who knows what the future holds...

Joy in the Meantime...

If you want a serious reality check of the moral compass of the world, just turn on any TV channel and watch what is aired day in and day out; or click on news websites and you'll find not only what's taking place here on our soil, but across the globe as well.  Good things, bad things, things we don't even want to know about!

Our moral intellect and faith are faced daily with problems that we can't find solutions to. 

If you look back on history, you can see time and time again people doing what is right in their own eyes and not following after the things of God.  And how He consistently calls them back to repentance and obedience.  How long-suffering He is.  How patient He is.  How merciful.

It's very hard for me to observe things this way.  My human flesh and finite mind want to say, "Why, Lord?  Why!?  Why do You allow things to go on that are this evil?  Why do You not stop them when You have the power to do so?"  Do you ever find yourself asking God these questions?  Asking Him why is He so inactive in the  sufferings of the innocent and why He seems to not care about horrible acts of violence and slow, terminal death of which He can heal but sometimes chooses not to?  But God is God and I am not, and He has clearly stated that our ways are not His ways and His thoughts are higher than our thoughts...We don't get to understand some things, but it doesn't mean that He loves us any less or that He doesn't care about the things that take place every day.

I read a while ago in the book, "I Became A Christian and All I Got Was This Lousy T-Shirt" the analogy the author wrote about his infant son.  His tiny baby boy had to undergo a spinal tap.  The doctors told the father that this would be painful but after the procedure they would hand the baby to him for comforting.  It was a necessary procedure, but neither the father nor the baby wanted it to happen. No one ever wants pain.

After the procedure they handed the baby over just like they had promised and the author writes that his little baby boy looked up at him crying and looking as if he were saying, "Why Daddy?  Why did you put me through this?  Why did this have to happen to me?  Why was it so painful?"  And the Dad could have said, "Well son it's a spinal tap and the doctors suspect meningitis and it is very bad if you have it and we have to know so we can treat it so you'll be better"....and on and on with medical terms and reasoning.  But would the infant have understood any of that?  Would that baby have realized that it was for his good?  No...

So all the father did was snuggle him up under his chin and whisper in a still small voice, "It's OK Son...it's OK.  I'm here.  I love you.  I love you and it will be alright..."

Much like our God does for us when we are going through pain and trials and things we don't understand.  Sometimes we don't understand how in the world a pain or "procedure" could ever be good for us.  But that's when we need to trust Him.  When we can't see the purpose in something, we have to put our faith in the One that does.  And realize that we are not alone, He is there, holding us close, loving us and with us through all the pain...

I love the very first few statements of the prophet Habakkuk:
 "O Lord, how long shall I cry, and thou wilt not hear! Even cry out unto thee of violence and thou wilt not save!  Why dost thou show me iniguity, and cause me to behold grievance?  For spoiling and violence are before me: and there are that raise up strife and contention.  Therefore the law is slacked, and the judgement doth never go forth: for the wicked doth compass about the righteous; therefore wrong judgement proceedth."

I could hug Habakkuk right now...I could tell him I feel his anguish and broken heart.  I wonder what Habakkuk saw the day he penned these words...I could apply it to seeing the woman abuse the 3 week old baby..."Why do you show me iniquity and grievance and you won't save the baby????"  But Habakkuk actually received answers.  Habakkuk was a man with honest doubts and wasn't afraid to ask God for help in understanding injustices that he saw. 

Chapter 3 verses 17-19 are probably he sweetest verses, the most beautiful hymn in the Bible. They read:
"Although the fig tree shall not blossom
Neither shall fruit be in the vines;
the labour of the olive shall fail,
and the fields shall yeild no meat;
the flock shall be cut off from the fold,
and there shall be no herd in the stalls:
YET I will rejoice in the Lord,
I will joy in the God of my salvation.
The Lord  God is my strength,
and He will make my feet like the hinds' feet
and he will make me to walk upon mine hingh places
To the chief singer on my stringed instruments..."

Our joy must lay in our confidence in God.  A God that hears and a God that rescues.  True faith means loving and serving God regardless of our circumstances.  Regardless if we understand "why".  For when we trust in Him, that's when we receive unspeakable joy.  We can trust in the fact that we will have victory over triumph and joy and peace in the meantime...

We will Trust Him, Come What May.

And the Lord, he it is that doth go before thee; he will be with thee, he will not fail thee, neither forsake thee: fear not, neither be dismayed.
Deuteronomy 31:8

He walks into each appointment before me.  When I'm crying He dries my tears.  When I'm sad He reminds me I am not alone.  He fails me never.  I remind myself...there is nothing to fear...be not dismayed.  I know the Great Physician and He can heal Henry if He wants to.  I'm praying we do not have to have surgery at all...but if He needs me to be there...to cheer someone else up worse off than us, then I will.  I can't have a long face, or be uncontrollably sobbing, or asking why, or acting like the sky is falling.  Instead, I must be composed, knowing my God is in control, and He can work this for good.  I have to first look for ways to bring glory to Him...and I will not be hiding in the shadows singing woe is me, but I will be drawing someone else from those hopeless shadows and leading them to the rock that is higher than they...

*Life with Purpose
*Faith with Focus
*Willing to Grow (or to be Pruned...)

Growing and Pruning both offer pain.  You can't get by without it.  You can't grow and you can't be cut back to grow better, without the pain.

But we weren't called to live easy, pain-free, blissfully ignorant lives, were we?  God said, "Be strong of a good courage" for a reason.  He knew we were going to need that advice.  He knew there would be troubles.  Heartaches.  Disappointments.  But He also knew that if we put our energy and focus on HIM and not the situation, then we could not be moved.  We couldn't be shaken.  The devil couldn't win. 

Keith said it best on Sunday night.  When the branch is cut back it becomes stronger because it pulls tighter to the vine.  When we're facing struggles, we need to see it as growth and when we're facing trials and heartaches we need to see that as pruning...you can either wallow around in self pity or you can choose to cling tighter to the True Vine.  The choice is yours.  But do those who like to wallow seem happy to you?  No. 

It's the ones that smile through the rain that is falling in sheets around them that are joyful, pleasant to be around, never knowing the storm that encompasses them.  Take heed to their countenance.  I pray I can bless someone through this storm. 

Yet I also pray that my little boy is miraculously healed.  

We shall be still and know that he is God.  And if in waiting,  He chooses to heal Henry we will praise Him for it!!!  And if He chooses to let us go through this, then we will prove that we will trust Him, come what may.

Greater Vision
God Wants to Hear You Sing
Their chains were fastened tight
Down at the jail that night
Still Paul and Silas would not be dismayed
They said, "It's time to lift our voice,
Sing praises to the Lord
Let's prove that we will trust Him, come what may."

God wants to hear you sing
When the waves are crashing round you
When the fiery darts surround you
When despair is all you see
God wants to hear your voice
When the wisest man has spoken
And says your circumstance is as hopeless as can be
That's when God wants to hear you sing

He loves to hear our praise
On our cheerful days
When the pleasant times out weigh the bad, by far
When suffering comes along
And we still sing Him song
That is when we bless the Father's heart

God wants to hear you sing
When the waves are crashing round you
When the fiery darts surround you
When despair is all you see
God wants to hear your voice
When the wisest man has spoken
And says you circumstance is as hopeless as can be
That's when God wants to hear you sing

God wants to hear you sing

Rare Down Syndrome and Rose Colored Glasses...

"I sought the Lord, and he heard me, and delivered me from all my fears."

Psalm 34:4

Yesterday on my way to drop the boys off at my friend Christie's to be babysat while Jeff, Henry and I could go to Children's again for Genetics counseling, I got a call from Melissa who is a dietician that we saw last month about Henry's weight and possible aspirating.  Henry had slept all but maybe 4 hours yesterday and hadn't eaten a ton either.  She told me that he had only gained 18 grams a day last month, not the normal 20-30.  But this was ok for now seeing that he will have to fight his weight for the rest of his life;  however if it is significantly less next month we will have to supplement with formula.  I do my best to feed my little guy, but how do you make a baby suck when he doesn't want to eat?  

Anyway, this conversation put me into sad mode...preparing for more tests next week at Children's at the ENT wing and wondering what they will find.  If they find nothing then we prepare for surgery.  Which makes my heart skip a beat at the thought... I know it's coming.  I will most likely run to the arms of my friends Phil and Jamie the night before, crying and asking them to pray for Henry and for me... I've already had nightmares of the doctor telling me he didn't make it....I shake the idea from my mind...that's not going to happen.  God has a purpose for Henry...

So, on our way to see Dr. Hopkin, with ideas in our minds and hearts about Henry and his breathing, being so exhausted from the labor of breathing, maybe that's why he is sleeping so much...but we don't have any answers yet or any way to get them until next week, so we have to put it out of our minds.  I tried holding back tears at Christie's because I couldn't figure out why I wanted to cry...and I tried holding back tears once we signed in and sat in the waiting room.  Jeff tried to get my mind off it by asking me about The Little Mermaid playing on the screen.  We had heard a family saying "Where did he go?" to the lady checking us in and she replied "downstairs to the first floor."  The couple frantically replied,"Oh my gosh!! By himself?!!!"  So while in the waiting room, a code Adam went off with a complete description of the 26 y/o man in jeans, a red shirt, a gold hat and a beard..." I almost cried just because of that.  Luckily, Children's is awesome and always on the ball, and found him in a few minutes. Still, more uneasiness.

It was our turn to go back.  Henry got weighed, and instead of weighing 10lbs 1oz like he was on Tuesday he weighed only 9lbs and some-oz.  They had weighed him with his diaper on then, but still...how do you lose almost a pound? It was a fresh diaper...I'm confused. But then Henry made us all laugh, he began peeing.  And peeing.  And peeing! The nurse laughed,"This is a record, Henry!!!" Pee flooded the scale and the table.  We cleaned him and dressed him and in the process of measuring his head circumference, the nurse put her arm in the pee...which made us all laugh at her. Tears, forgotten.

Next we met with Stephanie, who is excellent.  She is the genetics counselor who went over family history on both our sides.  It was funny, when she asked Jeff for ethnicity, he said "Kentucky".  Her and I shared a wink while Jeff went on talking about Germany and being Irish... tears that were once coming up from seeing her binder covered with chromosomes were fading as I realized and accepted this new life once again...embraced the hysterical and determined that at least we got to meet new and interesting people!

Stephanie explains that 95% of Down syndrome is the three chromosomes for 21 but sometimes one of those chromosomes can translocate to 14, or 13 or where ever.  Which I knew, because I read that in my book from the library . But that kind is rare, only 3% of Down syndrome is that kind.  And then there's Mosaic Down syndrome, which is only 1%, where only half of the chromosomes have 47 and the other half have 45.  Still Down syndrome, just different math.  We most likely would fall into the 95% category so she went to get the results from the hospital.  I didn't know they had them!  How cool!

She was gone for awhile then she came back with this.

She said, "Well, it was different than I thought.  He has translocation Down syndrome, but his translocated to the other 21 chromosome, which is even more rare.  I've never seen that..."  Dr. Hopkin had come in at this point and said that he had seen it before because he was an old man and had seen lots of things! 

Had Henry been our first child, Jeff and I would have had to have been tested.  Because if either Jeff or myself had been born with our mom's and dad's chromosomes stuck together in us, we would have passed that chromosome down to our children.  Which means that, say I had it, then my stuck chromosome would have paired with Jeff's chromosome like normal, but because there would be triple the information, every single one of our kids would have Down syndrome.  But since he's our third, we know that Charlie and Wesley are normal and so it's not from one of us, it's just a unique thing to Henry.

The event of the Robertsonian chromosome fusing together is called de novo, meaning it is not inherited and it is extremely unlikely to ever happen again....

Henry is a rare breed!

He is the little boy I never knew I wanted...the baby I didn't know I needed!

Our chances of having another child with Down syndrome is 1/100.  But that's up to God, not chance.

This is a folder they gave us yesterday.  Expecting an extraordinary life...I am hopeful today.  Yesterday's fears have since passed away and today is a new day.  Today is a day that I can choose to see Henry's Down syndrome as a beautiful, rare, precious gift that was specially designed for and given to me! 

Dr. Hopkin, who is fun-loving and smiley and funny and positive said, "You will have good days and bad days.  There will be days when Henry can't do something he's trying and trying so hard to do...and you will realize the loss all over again....and there will be days where you want to tell everyone you meet about the amazing thing he just did!  Embrace those days."

I wrote out a list of expectations:
Expect triumph over trial.
Expect victory over victim.
Expect love over loss.
Expect dream over doubt.
Expect fun over fear.
Expect accomplished over accepted.
Expect magnificent over mediocre.
Expect extraordinary over ordinary.
Expect Henry the Great!

This does not mean that we will grimace and groan when Henry doesn't meet our expectations.  We know that Down syndrome has it's place...but we also know that we need to put Down syndrome in it's place.

It took me till now to really understand the words "Down syndrome is a part of who he is, it's not who he is."  It doesn't define Henry. 

Today is a new day that I can view the best of all possible worlds...a day that I can see through happy, rose colored glasses...without any tears...