Reality Check

As upbeat as I try to be (I know it's not obvious to most of you but I do have my moments and I do put my game face on in person) there's always something lurking in the back of my mind.  

It's a reality I don't let myself quite grasp.

At the forefront of this affliction that has incapacitated my son is the obvious:

He doesn't develop.  He seizes a lot.  He's not well and he's not "right".  

It's not good.

But you (as a parent) don't let yourself actually realize how not good this whole ordeal really is. It isn't until someone else posts a blog and you follow the link because you are simply curious.  You want to read about other families that have to endure all of this so you don't feel so alone in this fight.  

So I did.  I followed the link.  I read the article.  

And I got a reality check.

Eeyore is my favorite...Tigger is just too happy!

Okay, I know what a downer this blog normally is and trust me I dislike it as much as you do, but I told you at the beginning I wasn't going to sugarcoat any of this and I don't.

But it does get old to always post negative things.

So, here is a happy-er post.

I am sure right after I publish this things will go sideways again and I'm getting SO far ahead of myself it's ridiculous (that's the Eeyore in me talking), but I need this as much as you do.

Noah is AWESOME (but you already knew that).

Today has been a day with minor spit ups and ONLY 2 seizures (mind you the day isn't over yet but HOLY COW!).

That's it.  Now just waiting for that other shoe.....  ::wink::

Rejuvenated

I love skype.  It's truly amazing how just SEEING the people you love so much can give you strength to fight another day.  And that's exactly what we'll do.  Keep fighting and praying things get better.  

To my fellow skypers:

I love you and loved every minute of our visits.  Thank you from the bottom of my heart.

Merry Christmas

PS:  Santa skipped our house this year.  Guess we were all on the "naughty" list.  %$!&*#

All I want for Christmas...

Dear Santa,

I've been very good this year (well, pretty good).  I've tried my best to be a good mother, wife, and friend.  I'm not asking much, Santa.  I just need you to help my little boy.  He's having a terrible time eating right now.  He isn't eating enough and I'm afraid for him.  The doctors think he needs surgery to fix it.  I think he needs a Christmas miracle. Please help us, Santa.  I'll never ask for anything ever again.  Please help Noah. Please let him eat and keep it down.  Please help him grow big and strong and not need another surgery. Please, Santa.  

Love,

Tricia

Exhausted...

I sit here staring at Noah.  He's in his bean bag chair Memaw and Pops got him.  It's like watching the timer on a bomb ticking away.  Which bomb is going to go off this time? Will it be a seizure?  Will it be yet another spit up?  Or my favorite, BOTH.  Either way I'm terrified to touch him.  I just watch in anticipation.  I don't dare move him.  If I do I will, without a doubt,  either start a seizure or cause him to throw up.  Nice, huh?  I can't even hold my own child.  

Once we got to take Noah's feeding tube out I swore I'd never complain about feeding him.  All I wanted for so long was to get rid of that f'n thing and feed my child like a normal mom.  Once again, God threw me a nice "gotcha!".  EVERY time I feed Noah he throws up.  I hate feeding him.  It's awful.  It's awful for him and for me.  I dread, with every fiber of my being, feedings.  And believe me, there are many.  I'm trying to cut back the volume in hopes he will be able to keep a smaller amount down so, in turn, I have to feed him more often (I was already feeding him 7 times a day).  So now it's 10.  All I do is feed him, wait a few minutes, clean up the feed from my bed (as he most definitely threw it all up), change his clothes, my clothes, find Hanna (she always runs and hides now), and make another feed.  

Oh, and I count seizures.  

That is my day.  

Can't I just sleep through all of this and wake up when it gets better? 

Will it EVER get better?

It's not looking very likely.

Truth be told...

I know I can't keep using "cop out" posts forever but I'm having a hard time putting it all out there.  

Honestly, things have really been sucking lately.

Noah is spitting up like never before and is having seizures like he's making up for lost time.  It's awful.  I actually didn't get out of pj's or brush my hair for about 5 days (which really really bugs me).  Leaving Noah even for 5 minutes just wasn't an option.  Thankfully I did get a shower (had a therapist coming over and didn't want to run her off!); I just finally had to risk it.  Risk it, you ask?  Well, Noah has about a 20 minute grace period between a feed and a seizure which promptly turns into spitting up his entire feed and then we start the cycle over again. I usually use those minutes to grab another cup of coffee and wash bottles and prepare the next feed/med.  We have been existing in our one room and at times it's feeling a little like house arrest.  I know how Martha Stewart must have felt.  I've had my hands full and laundry is out of control.  

Side note: I love my friends who often tell me they wish they were closer so they could help with things like laundry.  Trust me ladies, that is the last thing you would do for me right now, no matter how much I begged.  Our basement, where the washer and dryer live, is infested with bats.  Our lovely cat is picking them off one by one and bringing them upstairs to our kitchen, ALIVE.  So, I have a GOOD excuse to let the laundry slide.   It's yet another issue we will eventually have to deal with but I just don't want to!  Blame me? 

All I can say right now is thank goodness for wine. ::smile::

Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

I got this from a blog of a very special mother.  It pretty much sums it up, don't you think?  

"Holland" has been very cloudy, rainy, and cold this past week.  We are hoping the sun shines again soon.

Thrush and stuff...

We are treating Noah for thrush and maybe, just maybe, that's why he's having more seizures.  Seriously, he's having seizures every hour for 20+ minutes and I'm stressing out.  Guess antibiotics can decrease absorption of seizure meds and hopefully that's the culprit.  If not... well, I don't even want to think about that right now.  Tomorrow is the last day we are giving the medicine and I'm hoping we can get Noah back.  He's less responsive, less verbal, and a seizing maniac. Keeping fingers crossed...

On a better note:

My older nephew has an "A" in Chemistry and Algebra II!  Brainiac!

My niece is a hockey star!  Love it!

My new nephew is home and doing really well.  Mom and Dad are adjusting beautifully!

My parents drove 24 straight hours and made it home safely.  Geez!  

Rockstars!  All of 'em.

So proud of my fam!

That's all folks!

Rugs being yanked and other feet dropping...

Well, I got a taste of the good life, but it was fleeting.  

Noah is back to spitting up like crazy and having seizures regularly.  It's enough to make me want to curl up in a ball and hide.  It's so much harder to deal when I get a glimpse of an almost normal life and then it's ripped away.

It's almost like God is laughing at us.  Teasing us.  

"Here, let me show you a bit of happiness, fewer seizures, and a baby who eats well.  Poof!  I'm taking it away!"  Ha ha ha!

I'm not seeing his sense of humor apparently.  I'm taking it very personally and obviously I'm in a bad head space.

I thought things were going to get better and actually stay that way.  I was sorely mistaken.  

My parents have left which also doesn't help my attitude.  It was amazing to have them here and painful to watch them leave.  

In the past week two families have lost a child.  Both are weighing very heavily on my heart.  I have feared losing my child since our 20 week ultrasound, through three major surgeries, and a seizure disorder. Losing Noah is always in the back of my mind.  So when I hear about someone else losing their child I have to wonder what makes me so special that I get to keep mine, hug him, love him, and kiss him for another day?

And knowing all of this makes it harder to deal with my feelings. I have such guilt.  I should appreciate what I have (I know this).  I may have a spitting up, seizing baby who doesn't respond to me but at least I have my baby.  And I AM grateful for Noah, that he's healthy (in the cold and flu season sense), and my family.  I really am, but I want more. 

I'm sick of "at least" always being in my sentences.  I'm sick of people looking at my life and appreciating theirs MORE.  

I just want my son to get better and it's not happening.  

T-giving Photos