Sunday, December 30, 2012

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.

Saturday, November 17, 2012

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. 

Thursday, September 27, 2012

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.

Wednesday, September 26, 2012

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.

Sunday, September 23, 2012

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. 

Friday, September 21, 2012

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??

Wednesday, September 19, 2012

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.

Monday, September 17, 2012

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!

Tuesday, September 11, 2012

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.

Sunday, September 02, 2012

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.

Monday, July 30, 2012

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 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. 

Saturday, July 21, 2012

Today we spent a huge chunk of time at Homemakers (furniture and household stuff) and at Target.  We wrote down items and prices.  We wrote forever.  It took forever.  And it was depressing.  We were only able to get through those two stores before it was time to head for home once again.  This inventory thing is honestly SO time consuming.  It takes up most of our waking hours and we even dream about it.  Who knew we had so many things?  Just walk up and down the paper products aisle at Target and see how many items you have in your home.  Yeah.  Unreal.

Also, Macey has come down with a fever.  She was 102.2 tonight after we got home.  Please pray that she doesn't come down with something more serious.  The last time she was sick was the mega hospital stay...

Sunday, July 15, 2012

I think I need to write.

I think I might explode if I don't write.  But I'm not even sure where to begin.  I've never felt more lost in my entire life.  I've never faked it quite so hard.  I've never woken up, day after day, begging God to make things different.  And as soon as I utter that prayer I realize I don't dare ask that of God anymore.  He seems to believe my shoulders are quite vast, and I feel my shoulders are narrowing by the day.  Things keep popping up - right now, serious concerns about Macey and Madelyn's health - in the middle of my stress.  Things that I don't think I can handle right now.  I can't believe God would give me "one more thing" and then...He does.  I don't even know who I am or what I'm supposed to be or do.  I only know that 5 little, precious souls need me to be their rock, and I'm trying.  I can do anything for them. 

Friday, June 01, 2012

I've BEEN blogging...

Just not over here!  In case you missed out on the last several weeks of our life, here it is:

Things are still not where they should be, but we're taking it day by day. 

Monday, March 12, 2012

It's been nearly two months...

since I've blogged. How sad! I love writing, it's therapeutic. I often write things I don't normally process on my own. It's like my version of talking out loud to myself (which, don't get me wrong, I do that as well) and I've been lacking.

Today was the first day of spring break. No major plans, which is just fine as far as our kids are concerned. We have had the half-baked idea that we would go camping all week. The campgrounds are free right now...but you have no services: bathrooms, electricity. We have both of those things in the camper, so we'd be set. But we chose not to. The weather? Totally cooperating, stunningly gorgeous. But still. Nope. Caden is desperate to go. All too soon the campgrounds will be fully open...

I've found that life is a lot easier when Avery is home from school. She plays with Declan (who is easily "bored" at home with mommy and the twins) and typically with Madelyn for large chunks of time. I mean, 4 solid hours today. They're just holed up in her bedroom doing lordknowswhat but Idon'tcare. It's awesome! And then Caden and Macey will play outside together which is OH so sweet. Caden runs around getting her bikes and toys and she just bosses. Caden is pretty good on his own as long as he has his guitar. If Fresh Beat Band happens to be on at the same time then he will jam out to that show with his guitar. And Macey...usually with me most of the time. "Help you, mommy?" "No, nothing right now baby." "Ok. What dis mommy?" and so on.

Life is trucking along!

Tuesday, January 17, 2012

Happy birthday sweet Declan!

Yes, our little big boy turned 4 today. We had a low-key, but good day. Declan was in fairly good spirits as far as he goes. I think I only had to threaten a swat twice. Pretty decent!! All he could express he wanted was cake, so he had cake for supper. Oh, and ice cream. Well balanced, I'd say!

And I'm just documenting's been 2 nights in a row that we haven't given Avery melatonin before bed. So far, so good...

Thursday, January 12, 2012

Apparently, it's broke.

You know how I said earlier we like the "if it ain't broke, don't fix it" rule? Well it appears to have broken sometime this week. Last night we had Avery AND Declan in our bed - Avery complaining of acute tummy pain and Declan following her to our room from his bed where they had been sleeping. Then not 30 minutes later Caden came down and had to secure a spot on our bedroom floor. So when James left for work I had the 3 big kids in our room. And of course they were sleeping soundly when it was time to get up and get ready for school.

I'm thinking we need to go in reverse. I'm thinking the big kids need to be back in cribs.

Wednesday, January 04, 2012

Sleeping arrangements...

We have always adhered to the rule: "If it isn't broke, don't fix it." This has been especially true in terms of where our children sleep.

Caden is sort of our wild card because he has stayed so much younger than most children due to his special needs. Caden was in a modified crib/gate crib (yes we rigged something straight into the walls around a mattress on the floor, looked horrid but it worked!) until he was almost 8 if memory serves me correctly. He had been sharing a room with Declan (who was also in a crib) so we needed to keep them separated. When Caden moved upstairs into his new bedroom he went into a twin bed and has done amazing.

Take Avery. She was still in a crib until she was over 4 years old. No, there's nothing about her that "warrants" that but she was sharing a room with Caden at the time and they were both in cribs so it worked. They were sleeping, we were sleeping. It was bliss. She went straight to a full bed and has done amazing.

Then there's Declan. You may have heard me talk about him before (LOL). Declan so far was our earliest to move out of a crib at just a few months over 3 years old, but sleeping has always been a bit of a power struggle for him. Avery and Declan really enjoy sleeping in the same bed, so we have allowed that on weekends. When Avery was off school for Christmas break we allowed it every night and guess who cannot change out of that mode? We have found Declan sleeping outside our bedroom door for the past 2 nights now. For what it's worth, right outside our bedroom door is concrete flooring. He's either desperate or quite ridiculous, but I am not allowed to be the judge and jury on that one.

So I talked with James about it (and a good friend, thanks Val!) and we agreed - why do we have to conform to what "everyone" says about where/how kids should sleep? Why can't we continue to do what we have been doing which is listen to what our kids want/need and adapt to fit our family's life? So it's a school night tonight and Declan is tucked cozily into Avery's bed. They're both sleeping and were out very quickly. They KNOW the rule is: you horse around, the sleepover ends. And they are very good about it! We plan to keep this going as long as they both want to do it. I PRAY that Declan's ready to quit before Avery is. Otherwise, does anyone have an air mattress he can lug about the house after midnight??

Sunday, January 01, 2012

Theater success

So the last thing I wrote was not exactly upbeat (but thank you again for the support). In my praying I have decided that I need to view Caden in new and different ways. I need to assume he'll rise to the occasion and not just assume things won't go well.

I put myself to the test Thursday night. I wanted to do the typical "fun mom" stuff with my 3 oldest kids. I decided I was going to take them (on my own) to the new Chipmunks movie in the theater. Two of them had never been to the theater, and the one who had been didn't like the movie she saw several years prior. I did the whole thing up, popcorn, drinks, yep. We got into our row and I was helping everyone get their seats down and get seated (those seats do not stay down when you weigh less than 50 pounds apparently) and sir Caden dropped his entire thing of popcorn to the ground. I shared some of mine with him - crisis #1 averted. We were all settled in...they didn't understand that the previews WEREN'T the movie and spent a great deal of time asking me WHY I'd taken them to THIS and WHERE was Alvin the Chipmunk? The movie started and Caden stayed seated. Caden laughed at completely appropriate times (actually he cracked up rather hilariously at a few places and made the guy next to us chuckle more - Caden loves parts where people get hurt. Methinks The Three Stooges should be next?). Caden used a whisper voice to ask questions. Caden noticed character's emotions on the screen and asked me about them. CADEN DID AWESOME!!!!!!!!!!!!

It was just so fun to do something with my "big kids" and to really, really enjoy it. I wish we could go every week!!