Soooo over it

Alright.  Not even 24 hours into 2014 and I am SO over it.  It being sickness.

I think we finally have Caden's massive ear infection figured out, but it took 3 ER visits and countless hours of him sobbing during the night.  Tomorrow he has to go back to the clinic for a follow up and possibly more antibiotic injections AND we have to wrestle the brute down for drops 4x a day.  After holding him down he said with all the fury he could muster: "THAT'S NOT NICE!!!!"  HE MAD.

Then the twins have been vomiting off and on since Saturday...Madelyn screamed about her ear hurting a couple of days ago along with the vomiting so I started her on antibiotics that we had in case of strep throat during our Montana trip (we have the world's best doctor, just fyi).  Well, Madelyn is STILL throwing up and of course tonight she begged to sleep in Avery's bed and yes, you guessed it, puked all over in Avery's bed just after bedtime.  So Avery is bawling because "she threw up all over my STUUUUFFFFFFF!" and I'm ready to be mad at Madelyn for her puking (I know, stellar mom moment) and just GAH!!!

Macey felt like she had a fever when I kissed her goodnight.  I'm guessing the odds are in my favor that she does indeed have a fever upon waking.  I do also have antibiotics left for her but really REALLY don't like to use them unless I know for sure there's a problem...

And Declan.  The only one without real issues, except Madelyn slid down the slide on his loft bed last night and her toenail scraped along the fleshy part of his hand.  And you'd think he was dying, right on his deathbed.

HAPPY FREAKIN' 2014!!!!  It's not starting off nice, but I bet we'll see brighter days ahead.  We better, anyway.

On Wednesday when I picked Declan up from Kindergarten his teacher bent down to him sweetly and said, "Declan, what are we not going to say on Friday?" My heart hit my butt and he insisted he had no idea. I tried to figure out a way to explain that my 3 youngest use the phrase "stupid idiot" like "chocolate milk" when she said, "Remember, we are going to only say I CAN DO IT! or I WILL TRY!" WHEW. Declan had only pulled out the ol' "I caaaaaaan't" mantra, not anything else.

God has been using one of my love languages (Facebook!  hahahaha) to really get through to me lately.  In the past days several people have shared things with me or shared things themselves that have spoken to me loud and clear.  Here are two of them:

"I am continually at work in your life, even when you can see nothing happening. It’s easy for you to feel stuck in a situation you’d like to change because you can see only the present moment. But I look at the big picture—all the moments of your life—and I am doing more than you can imagine." -Jesus Today by Sarah Young, p. 302 (need to track down this book!!)

In this world you will have trouble. But take heart! I have overcome the world. John16:33

I am really trying to be still and listen right now.  It isn't easy, but it's something simple I can commit to.

Something's missing...

God, I feel like you have betrayed me. I have trusted for so many years but now, every morning, I wake up just sad. Sad, all the time. I haven't been brave enough to share this with anyone until just now. I don't know how to reconcile how hurt I am with what I know about You from forever in my past. Right now you are far away and you are quiet. I don't need my friends and family to tell me I need to reach out to you - maybe you could throw me a bone now and again. I'd really like that joy that comes from deep within and the "peace that passes understanding" but for now, I feel completely empty inside, and it honestly feels like you don't care. I realize this is the only way I have communicated to you in several days, but I really am not sure what to do. I will keep on keeping on, as I always do, but something is missing and I have no idea what.

Raw honesty...

This isn't going to be a pretty blog post.  It isn't going to be one that gives you a laugh and lets you walk away from the computer lighthearted.

This is honest.

I am depressed.  It is kicking my butt.  I thought all along I have been doing ok with it.  And I WAS...sorta.  I've dealt with depression since high school, and have dealt also with knowing I have bipolar since the early 2000s.  I've dealt with them and I have really found the right combo of meds which help me to function well and more importantly, to FEEL well.  But now, that is all being threatened.

I'm sure it's situational, and I give myself some credit there, but at the same time, it is so disappointing, scary and frustrating.  On one hand, I think I might be dealing with Post Traumatic Stress Disorder.  I have crazy "flashbacks" of the fire, my heart races, I can't breathe, I can't calm down, I can't function.  And again, that's understandable.  I'm seeking some help for it but then comes depression.  Depression is one of those silent things.  One of those things where you think you're doing ok.  You tell yourself you're doing ok for SO LONG that by the time you accept you're really struggling, you're past the point.

I'm sleeping.  All the time.  I fall asleep on the couch in the middle of the day...with the kids.  I snap at my kids.  I cry over everything.  I usually cry when I look at my twins.  I see them, running, twirling, playing and I think...one day, they won't be able to do that.  One day, they won't be able to do anything but sit in a wheelchair.  And my heart feels like it's so heavy over that it sits in my gut.  I find myself avoiding them.  I don't want to see how sweet and cute and funny they are because I fear one day that will all be gone and those memories will hurt too much.

I'm becoming angry about the fire.  Moreso than before.  I'm angry that we lost everything.  I'm angry that the subsequent house building is taking so long...and that is no one's problem but the weather!  I can rationalize all of it, but it still just angers me.  I'm so upset that it feels like we have NOTHING to look forward to.  I am truly feeling HOPEless.  Nothing's happening.  Nothing's moving forward.  I feel stuck.  Completely stuck. 

I don't want to do anything.  I barely want to go anywhere.  I just fake it.  Force myself.  Keep moving.  And that's something that lots of moms have to do, but I feel like I am moving underwater to get anything done.

I don't talk about it a lot.  I have barely shared this with ANYONE at this point.  I'm afraid of reactions.  I'm afraid that people will think I'm being a drama queen.  I'm afraid.  Of a lot.

Depression is something we just don't talk about in America.  And I think we need to.  Real people live with it every day...probably a lot of people that you know. 

I needed to get this out.  I'm deciding to trust a lot of you with it, if you'll take the time.  As I said, I am seeking help for it, the appointments just had to be changed and I am waiting on them.  Until then, I would love your prayers.

Madelyn, while walking up the stairs today, hanging on to the rail but NOT demanding to also hold mommy's hand, said:

"Mommy, I good job-in'!"

Yes, yes you are, little one.  *loveher*

In some more honest news...I totally blew it tonight.  Totally, utterly and completely.

I only had about 300 calories remaining before supper.  I blame the dear, sweet friend who brought me a homemade cinnamon roll today.  (No, I LOVE her for it.)  But I really didn't pay attention to that mere 300 calories and had pizza, plus Smores dessert pizza PLUS a regular Smore over the fireplace with my sweetie.  Oh yeah.  BLEW IT. 

It's one meal.  And deep down, I knew I was going to do it.  Now the trick is...don't do it again tomorrow.  Don't let one slip up become a landslide.

This, I can do.

Yesterday's starting weight was not pretty.  Not at all.  When I FIRST started my weight loss journey 3 years ago I was 267.  I was just 9 pounds under that yesterday, which means the 70+ I had lost had turned into 9.  NINE.  So sad. 

But.  There's nowhere to go but back down.  And that's where I'm heading.

This morning I was down 1.6 pounds from yesterday.  So in one day (plus 3 years, shhhh) I have now lost 10 pounds!  Woo hoo!

And I actually exercised yesterday.  Granted, it was 20 minutes of walking at only 2.5 (a few minutes at 3.0) and I was winded and sweating.  But again.  There's nowhere to go but healthier from here. 

Some observations about my weight/size/health:
a) I am not able to go up a flight of stairs without breathing harder.
b) Carrying a twin (30ish pounds) up the same flight of stairs nearly makes me have to stop to collect my breath.
c) I have quite a few aches and pains in my joints.
d) It is difficult for me to bend over for the time it takes to help one of my kids get dressed or put shoes on.
e) I try to avoid squatting to help someone with shoes because I just about can't get up from that position.
f) I have a difficult time putting on socks and shoes (the bending over/forward part).

So there's some honesty for you.  My hope is that, along with weight loss, all of these items will be things I have no problems with in a matter of a few months.

So it's 2013.  I know, thank you, Captain Obvious.  But I'm just feeling GOOD about this year.  So many people make New Year's Resolutions.  I never really have.  I always SAID it was because of one thing or another, but the truth remains this:  I never made them because I was terrified of failing.  And now, I'm on the other side of a typical NYResolution fail - I lost almost 80 pounds and gained over 60 back.  Truth be told, that sucks, it really does, but that doesn't change who I am.  It doesn't change my personality or the fact that I could have the a$$ of a $40 mule and my kids would still adore me.  It truly doesn't change ANYTHING (ok let's be honest, it does change what size clothing I wear and it changes some things obvious only to me in private moments, but I really can't type that out...). 

I'm going to be honest here.  This is going to be my "safe place" and I really don't care who reads it.  To me, weight is just a number.  To some it's a private word only to be shared with your doctor...and then only because s/he already saw it on the scale.  But weight is a marker of where you've allowed yourself to go.  You don't get fat from simply not exercising...you get fat from eating too much food.  I have spent a lot of time eating too much food.  I use food for comfort and the past 8 months have been torture in some emotional ways.  I turned to food.

I am going to start learning some coping mechanisms that don't involve food.  I am going to start being positive, even when I screw up.  I am going to be proud of every stage my body is in.  If I give the stages my kids are in my full embrace, of course I should do the same for me!

I'm going to write.  I'm going to write, and I'm going to put it all out there.  I lost lots of weight, but then I let life take over and I am totally fat again.  And I hate it.  I am not happy about it, but it is what it is and I will own it.  I will own it and I will say, in 2013 I'm getting a handle on this.  I am going to take ownership of my actions and of my life.  I am going to have a new house.  I am going to have 5 fully potty trained kids (we are alllllmost there).  I am going to embrace the little things and love life and be cheerful and just DO IT.  Let's roll.

If you're a mom, you're probably familiar with that time in a child's development where they don't TECHNICALLY need naps, but you do.  Ok, no, where they don't TECHNICALLY need naps but they are awful from about 4pm and thereafter.  It's trying when they go through this.  It's DOUBLY trying when it's twins going through it.

Tonight James ran to the store (it's super nice to live in town!) while I put the kids to bed.  All went well until Macey decided she wants "up".  Um, no, it's bedtime, it's not time to get up.  Guess what happened today as a precursor?  You're right, they had a nap.  They had a horrible afternoon with multiple meltdowns so James and I tag teamed and brought them to their beds.  They took a great nap, but here we are, paying dearly for it at bedtime.

Yes, she's still screaming. 

And honestly, it would have been ok except the stairs in this house creak when you ascend or descend.  I went down (sneaking through Caden's bedroom) and Macey knew it.  Hence the screaming. 

Note to self:  when building, do not allow stairs to creak. 

It's Homecoming Week at Pella Community Schools. Caden has worn ridiculous hats and had clothes on that mismatched horridly. Today, however, I tried to get him to put on two different colored socks. The sobbing and actual tears that ensued were NOT worth it for a school spirit dress-up day. Apparently you can look like a hot mess but your socks should match.

It's so sweet, yet sad at the same time...

When we're driving around, Declan consistently points out what he deems "pretty houses".  He tells me, "Mama, when the brown house (the one we're currently living in) burns down I want to find you a pretty house to live in."

He has such a beautiful, tender spirit at age 4.  I hope with time he doesn't automatically assume every place we live is going to burn down.  Although I would be lying if I said at 34 I didn't sometimes worry the exact same thing.

We went camping this weekend.  Yes, it was "cold", but that's a pretty relative term.  The nights were cold but we made it.  The kids slept well.  It'll probably be our last time going out for the year, and we had a good time.

It was just me and James at the campfire for a while on Saturday night.  We both sought the fire out.  Sort of ironic, but yeah, it was cold.  We wanted to build it bigger, higher.  We find ourselves mesmerized by fire, how it just needs fuel and can just go on forever.  We throw things in to watch them burn and we think, "I wonder what the kitchen looked like...."  James slipped away for a minute and I was alone by the fire.  It was captivating, and I couldn't stop watching it.  Suddenly I very clearly heard God ask me if He could speak to me through the fire.  He knew it had caused me great pain but wanted to be a comfort through the flames.  I listened, and the message He had was simple, but astounding: "Fire doesn't seek to destroy, but to persist."

I needed that perspective change.  Fire didn't destroy my life, but it has served to persist in helping us to move forward with hope.  Sure, we're sad and it's not something we'll just get over super soon, but wow, just to persist.  I can do that.  I can persist, in spite of fire.  I can persist, no matter what. 

The twins are chasing each other around the house right now.  I just went to a tent sale at a local store I love going to, and we picked up a set of 3 cloth pumpkins for decor (they were clearanced at 70% off because they were last year's but it works out perfect because I had them from last year but lost them in the fire).  So yes, they're chasing each other around and one twin said no, she wasn't going to do something.  I then heard the other twin say, "Then I will poke your eye."

Last I checked, they have never watched The Three Stooges.

"Then I will poke your eye."  Seriously, kid??

Happy Wednesday.  The sun is shining.  And I am thankful.

Last night I was out and about and noticed that it was completely dark by 8:08pm.  That is just not acceptable.  I wish we could have the long days of summer year-round.  I could certainly handle the cold, bitter winters if the sun shone and lasted for a long time!

Tonight we meet with the guy who is drawing up our house plans.  He has a rough draft so to speak and then we will get into more of the little details.  I've got lots of ideas floating around in my head - we'll see where we can go with it all!  Still thinking we might be breaking ground next month.  My heart is hopeful.  I need to see something happening.

So perhaps, just maybe, fevers are a part of the form of muscular dystrophy the girls have.  I say this, because after my wallowing last week (which resulted in NO chocolate chip frappes that day, so bizarre) I decided to reach out to a fabulous group of people on Facebook who all either have Limb Girdle Muscular Dystrophy or have children with it and ask them about random fevers.  And to my astonishment, it's common.  Very common.  No one has said they know it's part of LGMD but I really think it is just too coincidental for it NOT be to part of it.  I'll be asking at our October 26 appointment with the specialist and her team from Iowa City.

I'm actually quite excited for that appointment.  I remember going to Caden's appointment soon after his diagnosis and just being so overwhelmed.  So fearful.  So upset.  So everything and nothing, all at once.  But now, I am excited.  I want to get some answers, and these people have answers!  There is a lot that is known about LGMD and I want to learn it.  They should even be able to tell us what they see in the girls in terms of strength and prognosis, which is encouraging as well.  Of course we know logically we'd never want that crystal ball to see our futures exactly, it sure does help to have some idea of what's coming.  Then again...maybe not.  Anywho, I just want to hear what they have to say!

I don't like to feel sorry for myself.  It's not something I spend time doing.  It certainly never HELPS anything, but instead allows you to wallow in a place you shouldn't be.  So I honestly try hard not to do it.

This morning, however, I am feeling sorry for myself.  I am trying hard to battle this depression by getting out and doing things.  I was all set, I mean ALL SET (makeup, earrings, pretty clothes on me and the girls) to get the big kids off to their rides to school, get Declan off to preschool and then take the girls to their "school" - really a Bible Study at our church where the girls go to a special program called Little Lambs.  They have been begging to go to school so I can use this to my advantage. 

I noticed that they were pretty clingy after getting dressed.  I was carrying Macey, who was laying on my shoulder, and I leaned my cheek against her forehead.  Hot.  You guessed it - both girls have fevers.  No Bible Study for us. 

Sometimes I feel like "what's the point?".  No, honestly, MOST days I feel like "what's the point?".  I don't get what I'm supposed to be doing.  I don't understand why things happen, for no apparent reason and certainly not to lift your spirits.  I don't understand why we aren't given answers to what happens to us, as a way to process our feelings and move on.  Instead, we just deal with them, over and over again.

Today, I am wallowing.  Tomorrow will be much better.  Until then, I'm going to have at least one chocolate chip frappe from McDonald's.  Probably more.

It's been 8 weeks today since the fire.  And about 7 weeks since we found out about the twins having muscular dystrophy.  I think I was running on adrenaline and the overwhelming outpouring of support from our friends, family and community.  The adrenaline is majorly waning.  I am tired.  I am tired a lot.  The support is waning.  And I totally get it.  Our immediate needs have been met.  But now, our hearts are totally broken.

The house is now completely gone.  There are a few toys scattered about the property that the bulldozer missed, but other than that there's no evidence there was ever a house there.  I feel like I need affirmation that it existed, that we loved it, that it was not just a house, but a home.  It was a place where we brought all 5 of our kids home, where we got married and moved in together, where we made a home.  And that's all gone.  I long for people to tell me, "I remember the twins' bedroom, it was so cute!" and stuff like that.

Gosh, even now I am just crying and crying.  I just miss it.  I know it was just a house and we're all safe and I'm thankful....I'm just sad.

And then we have to work on inventory.  Everything.  Everything in the ENTIRE HOUSE.  Fourteen years of everything.  The Cabbage Patch doll I got in 1984/85 when they first came out.  Her name was Donia.  And she is gone.  My babies' first little locks of hair - all 5 of them.  Gone.  And no one asked me.  No one asked my permission.  No one cared that it might make me sad.  And inventory is such a vicious cycle - you HAVE to work on it if you want to get money back to replace your things, yet working on it is DEPRESSING, so you don't want to work on it...but if you don't work on it you won't be able to replace anything.  Vicious.

I know no one has forgotten about us.  I'm sane enough to know that, yet it's just so painful.  I'm living in a house that isn't mine, with clothes and furniture and things that aren't mine.  We are starting on building plans and have a builder we love.  People keep asking if we're excited.  Excited?  No.  Thankful, always, but not excited.  It's very difficult to crank up some enthusiasm for massive undertakings you never wanted to take on in this season of life.  I'd like to enjoy my kids and spend time in my home decorating for fall. 

Gah.  I hate to sound so bleak but I'm really not feeling all the fantastic right now.  I covet your prayers.

Today we were driving home from Des Moines after talking with our geneticist for the twins.  I said to James, "I never would have named my blog 'This is our Normal' had I know the directions our life was going to take." 

And I mean that.

I don't want this to be our normal.  How do people survive in this kind of normal?  I'm barely making it.  I mean, I feel sort of ok overall, but the slightest thing makes me want to snap.

In the past 24 hours Caden has locked the keys in our van twice.  Not once, but twice.  Yesterday it was in the garage at my brother's house (we're living here for a time being after the fire, and they are on a family vaca to MN, so we have indoor parking).  Yep, just locked it right up.  I gave him a nice talking-to, but apparently that was for naught.  Today I got to my parents' to pick up the kids after our Des Moines appointment this morning.  I couldn't have been there more than 8 minutes total - mom was getting ready to leave for work so we were moving.  Well Sir Caden had gone outside while we were gathering up the kids' things and yep!  Locked the *%&^ things in the van AGAIN.  I had planned to pull the keys out when we got home each time now (and there WERE extra keys...in the burned house) but he did it when I wasn't ready.  I swear, I almost lost it.  You know that feeling you get in your head, that whooooshing sound that happens immediately before you swear your head is going to explode right off your body?  That happened.  But my head never actually blew off.  I think it's going to happen soon, though...

So yes, house fire on July 8.  Total loss, "but everyone's ok".  I disagree.  Everyone is NOT ok.  But yeah, technically no one died.
 
Macey and Madelyn get the "possibly have Limb Girdle Muscular Dystrophy (LGMD) but we have to wait a few eternities to get some tests back" news on July 13 (that was a Friday, and I SAID I should have never gone to that kind of appointment on Friday the 13th).

Friday the 27th we learn that they do indeed have LGMD.

Monday the 30th we learn that they specifically have LGMD2i.  So if you're a google nerd go ahead.  And as an added bonus, any/all of our other children could possibly have it as well.  We can do a simple CK blood test and have it confirmed in a matter of hours.  I am waiting until at least fall to do this.  Just fyi.  Do not ask me if we have done this.  NOT ready.