Friday, December 30, 2011

Precious Memories

Today I had the privilege of attending Arlene Warner's funeral.

Arlene was 79, nearly 80, and was my childhood neighbor.

During this time of year, the 4-H group would split into groups to go caroling and deliver food goodies to people in need.  I remember going to Arlene's home - she lived with her sister and brother-in-law.  She was genuinely so happy to see us.  I remember the smile you see here in her obituary:

If you look close enough and can use some deductive reasoning skills, you may guess Arlene had Down syndrome.  As a young girl I did not think "Down syndrome" when I saw her.  I thought "happy".  Yes, I know it sounds cliche but keep in mind I am not saying she was always happy, she was when we showed up to visit her!  I did not even know about Down syndrome.

Now that I think about it, Arlene was nearly 60 at that time.  That is amazing to me!

The service was very nice.  The church was full and there were wet eyes in the crowd.  Her sister's especially.  She was very special to many people.

Arlene's brother-in-law shared a description of Down syndrome.  I realized how far I've come because at one point in this journey I felt like I did something wrong and I was defective.  As I listened today, I was reminded that first of all, it may not have been my egg and second of all, either way, I am blessed!  God has given me a very rare and extremely precious and priceless gift.  Love.
Nolan cannot keep his hands off him!  He knows, I have no doubt.

At one point I thought more of what I would receive from Calvin, now I cannot help but think about what I can give to Calvin and how much pain I have for all the orphans who are orphans simply because they have Down syndrome.

I commend Arlene's family for showing the world how important people with Ds are.  They did so in their commitment and love for her.  They showed it on their tear stained cheeks that are crinkled from all the smiles Arlene brought to their faces.

Thursday, December 15, 2011

Trust Your Gut (Descending Into Illness)

Today I was thinking about God's Gifts.  With Calvin I receive knowledge.  I have learned so much and I get excited thinking about what I will learn as he gets older.
Here's the thing: It can be scary, or exciting.  I choose.  You choose.  For the most part I work to choose excitement and peace over the fear.  I may be a bit ignorant.  I may not.  Either way, it is work to fight the devil.

I wouldn't ask people of all "normal" children to fear what could happen to their children.  Rebellion. Accidents.  Health changes.  The list goes on.  Interestingly, the fears can be the same, regardless of abilities.
However, as I said last time, I have learned fear is a waste.  It is similar to my fear regarding never nursing Calvin.  Add that to what I am reflecting on here: I have learned a lot.  Thank you to Calvin!

(I am getting there...)
Calvin has been struggling with another cold.  I have noticed a slight, very slight, change in his nursing before bed.  It has not been quite as vigor.  However, considering his sleep, I was not sure it was anything more than being worn out from his own lack of sleep.
Sunday and Monday nights were awful.  Hours awake at night.  Tuesday he napped at daycare from around 2 to 4:30.  I was not sure what to expect that night.  Then, he goes and sleeps from around 8 to 5.  He was pretty needy before bed as well.  Again - lack of sleep catching up?
Yesterday morning he slept again after waking at 5.  He was up at 8:30 and we trudged off to Evan's Christmas program at school.  Calvin slept on the way home, which was around noon.  Reaching home, I sat to nurse him I immediately noticed the extra heat.

101.4  My heart started racing.  Not this again.

I talked the pendulum into swinging from one end to the other and back again.  I decided to take him in.
The doctor, the one he has seen for all his check ups, but not at all before his hospitalization in October, listened to him.  She looked in his ears.  She tried examining his throat.

He sounds fine.  His ears look good.  Treat him with pain meds.

My stomach lurched.  My heart was pounding again.  You're sure?  His lungs would sound worse if it was pneumonia?  I'm just worried.  A little gun shy.

Yes.  Yes.  Understandable.

Off we went.  No pain meds but fever was better last night.  Sleep wasn't.

Sat down with Cal this afternoon.  Heat.  100.6  Then I was feeling a bit anxious and angry.  Time for a second opinion.  (Not to mention I do not hear "fine" lungs.)

Got that opinion and...pneumonia and redness in ears.

Not happy about yesterday's appointment.  I knew it was not thorough enough.  I needed her to consider EVERYTHING!  I need to be his advocate!

Lesson learned.  Trust your gut.  I knew yesterday that something was brewing.  I am praying hard that he fights any further issues and we do not ever spend another round at the hospital.  One day could make a difference.  Damn it.

I do not know what to do.  I am in limbo.  I do not want this to happen again.  I am blaming myself.  I am afraid he is aspirating his bottles.  So I am packing up the guar gum and working on another swallow study.  Remember how happy I was when he passed last year?  I do - I was walking on sunshine.

I am afraid he will end up here every time he gets a cold.   I am feeling guilty for sending him to daycare where he is away from me and exposed to more illness.  Remember last year's line up of illnesses?  Me too: None!  I need to pray and pray and think and trust my gut.  Do you think "trusting your gut" is the same as "trusting God?"  I do.  I think it is God's voice.  Photobucket

Monday, December 12, 2011

Spike It

And you will have things you will like to talk about, and I will, too.
Thanks Mr. Rogers.  You're correct.  I do have lots to talk about.  Just not enough time.  I hope posting pictures and sharing the love I have for my boys is advocacy enough right now.  I love Down syndrome and Thank God for it Every Day.  I would never ever delete it from my life.  I would never take it away from Calvin.  I know he is who he was made to be.  He is a miracle.  Otherwise more people would have it!

And believe me, I was pretty afraid.  I was just thinking about it on my drive to school.  "Where did I come up with my fears?"  I do not know and I never want anyone to think the way I did or worry about what I did.  It was useless except I can now compare and be glad in it.
(Evan's first mohawk - begged for it for weeks, I'm just too lazy to have gotten out the goo)

As a follow-up to the throwing up thing - it was a bug.  Nolan joined in the ranks that evening.

Praying for strong immunities here.

God, you have heard me a lot lately.  I get that you do not want to grant me the one thing I plead you for.  So, I thank you for giving me energy and a happy husband.  Those two things, and you as well, get me through the days.


Saturday, December 10, 2011

It's Been A While!

We have been up to a lot.  Too much perhaps.

Calvin is fighting off another cold.  All was going in that direction until he started throwing up this afternoon.  He is gagging a lot and there is a lot of slime involved.  I am suspecting it could be drainage from his ears.
1.5 weeks ago we took Cal to the ENT.  He had a double ear infection and was treated with antibiotics.  He will have tubes put in on the 29th at Children's.  We feel that time cannot come soon enough.
I spend most nights up for some time.  It is not uncommon for it to be 1-2 hours.  I feel sorry for myself but more so for Calvie!  I am tired and not always in the best of moods.  I have been more angry and easily annoyed.  I guess I could go easier on myself.  I have been doing okay but not with much extra.  When I have more commitments I feel like it is just too much.  My plate is already overflowing.  However, I love when I get to do things with the boys.
checking out the new bike trainer
Evan has his Christmas program at school on Wednesday and I am going!  I still think about staying home (not working outside the home). It is oh so tempting except that financial piece.  If only I could find some gold to sell!
Notice the missing bricks?  Another piece added to the overflowing plate...a mishap involving a boy, climbing moves, and a faulty installation.

All in all I am grateful for all of this and mostly for my family.  I love my boys and wouldn't trade them for anything, except my life :) PhotobucketPhotobucketPhotobucketPhotobucket
Nolan has learned how to give 'thumbs up'!
Teenie Calvie is pulling himself up more and more!
Cowie needs a family, is it yours?!?!
Please?  I'll make you a cute face or two!
I actually enjoyed this naughtiness!
Nolan wearing his mouthpiece - bringing out his bottom jaw.  This will be awhile as he prefers his finger...
I planned to post a few days ago, but apparently Calvin thought I got the computer out for him.

Happy Holidays, from our home to yours :)

Sunday, November 27, 2011

Take 2

I have another post that I may or may not publish.  It is so boring!  All about how burnt out I've been.  Basically it sucks.  Tired would describe me and why I'm not here much lately.  I should be in bed and when I'm not, my time is precious and I am picky about where I spend it.

So, a quick sentence or 2 on each of the boys and some pictures to show the good ways of spending the little time I get with them.  Makes me sad...okay, here it goes:

Evan is doing well.  School is great.  His teacher emailed to tell me he is doing well and is a nice boy.  That is all I ask for - nice!  The Lord knows teachers appreciate that!

Nolan is loving daycare and his playtime with the kids there and also with Evan.  Sure, he pokes and prodes and pushes buttons.  Nolan is so sweet as well!  He is now in the process of wearing a mouth-gaurd looking thing from the dentist whom has the hope that it will pull his lower jaw forward.  He wears it at night and a couple of hours during the day.  However, the daytime is tough because "I can't talk!".  Nolan is, as I've said many times, something so special to me.  They all are, but he is just exactly who he is and does not analyze it.  Unlike me...

Calvin is doing okay.  Sleep still sucks.  He had an ear infection 1.5 weeks ago and we go to the ENT on Tuesday.  Cal is moving around like crazy.  Standing longer, making lots of noise, and starting to get up from sitting more.  Not yet pulling up but soooo close!  He is the perfect little brother!

Ready for a jillion pictures?
Kitty, then pics at my parents for Thanksgiving.  Of course we were celebrating the Packer Game as well!
Here you go, Cousin Adam.  Peace offering?
Ah, forget that peace offering, I'd rather keep violating your personal space, I mean face!
Cousin Adam is 9 months younger than Calvin - he's a big boy, ready to take on this intruder!
A little hot chocolate for my Tiller.
Ev was very proud of his work at school.  He was happy to wear his "state of american" costume.  I worked on that one...
Very little helps my mood like fresh pine, a crackling fire place, music, time as a family, beautiful colors, and ornament memories.  Welcome Christmas.  I love celebrating Jesus!
Calvin did not help decorate this year but he enjoyed playing near us!  He left the tree alone.  I wonder what next year will bring?
Off to a busy week...bummer :(