Tuesday, July 28, 2015

Simplicity during the school year

Yes, I'm all about simplicity these days.  Simplicity in clothes, simplicity in life.

This year we decided to stop the boys' therapy for the school year.  It will be really nice to be able to come home from school in a leisurely fashion (read: Sonic Happy Hour) and the boys can get right to their showers, homework, and playing.

Ilse will have her therapy in the mornings.  I'm betting, since she has six therapies a week, that we will be busy for four mornings to get it all done.

I'm not sure what our nursing situation will be.  To be honest, since our wonderful nurse Angie took another job, I just don't have the heart to look for another nurse or open up our home to another one, for quite a while.  I'm going to see how I do with sleep and mentally/emotionally before I think about using all our hours again.

Thankfully we have some good financial things going on.  I've finally conquered (thank you, Lord!) my Starbucks addiction/need/desire.  Switching it out 1:1 for Sonic was the key.  Thanks for the idea, George!  Now I'm going to Sonic even less than 1:1, but have the freedom to go as many times as I need to or want to is pretty awesome.  Not going to Starbucks is saving us a pretty penny, let me tell you.  I pretty much made my mom speechless the other day when I told her how much we would save.  There are some other places we need to put that money, like giving to the church.

Now that we have also mostly conquered our complete exhaustion that made staying home on Sundays so easy, we've been so enjoying being at the Lord's Table and being with our church family again.

And we've also finished paying off Tim's alternative certification program, which will raise his income $380 a month, which will in turn pay for his Uber cars, if we choose to go that route with his transportation this school year.  Even if I drive him sometimes, at least we know that we can afford Uber and that is a big blessing from the Lord.

In the next few years we're looking forward to living on the same plot of land with Marc and Ivy and their kidlets.  We've been dreaming of it for years and hopefully we'll be able to buy the land and build before to much more time passes.  I'm looking forward to living next to my best friend and letting our kids grow up together.

And that is my brain in a nutshell today.  :)

Monday, July 27, 2015

Simplify Simplify!

I read an article the other day about how successful people wear the same clothes every day.  While I'm not interested in having a 'uniform', I am interested in simplifying our laundry situation during the school year.  For two years now I have bought the boys a pair of clothes for each school day and one extra pair in case of an accident.  Every day when the boys come home, they put their clothes in the dirty clothes, shower, and put on clean clothes, which they then wear the next day to school.  All this is to protect Ilse from germs, in particular RSV.  We've been successful thus far: she's never had RSV.  In fact this past year she's been sick one time with a cold.  Only once.  That's pretty awesome!

But I can't do it anymore.  There's too much laundry.  I see it in my dreams.

So the other day I went to Old Navy and bought the boys five shirts each (and they match!), two matching pairs of shorts, and four different colored pairs of jeans.  I don't know why I got different colored jeans, I think I had a brain fart, but it's too late to change it now.

We came home and I wrote M for Monday on the orange shirts, T for Tuesday on the light blue, etc., etc., etc..  For the shorts (for august thru october ish) I wrote M/T/W on the grey pair and TR/F on the khaki pair.  The jeans also got M/T/W and TR/F on them.

I'm hoping that with designated clothes to wear on specific days, my boys will always look decent and that we will have much MUCH less laundry.

I'll let you know how it goes.




Monday, July 20, 2015

Love Letter to a BLT

Dear Arby's King's Hawaiian Brown Sugar Bacon BLT,

I knew the minute I saw you on the Arby's drive thru menu that I had to meet you. You looked amazing-- a thick stack of bacon and just a bit of lettuce and a few tomatoes. When I opened the box you were in and saw the mayonnaise and the grease dripping out, I thought this would be a nice date, but it was when I took my first bite that I realized we were a match made in heaven.

I had never tasted such tender yet crispy bacon, and you'd dressed it in a heavy dusting of brown sugar that made me wish I'd ordered three of you. For some reason I thought your bun would be a regular hamburger bun since I'd only seen 'BLT' on the menu and not your whole name. But no.Your bun was sweet and soft. No wonder there are 65 carbs in you. As the flavors of your bun and bacon melded in my mouth, I tasted your bit of lettuce. It was cool and wet, like it'd just had a nice ice water bath.

I'll be honest. I considered taking your tomatoes out. I don't like tomatoes. But I'm glad I didn't. I don't think anyone who ate you could any longer say they don't like tomatoes. They were the perfect complement to your brown sugar.

How could I have missed such a pairing all the years of my life? I'd heard of BLTs of course, but YOU! You are the king of BLTs. You could rule the world. Sadly Arby's plans on keeping you only for a limited time. Come live with me; I'll never ever send you away. I'm not afraid of commitment. You'll be my one and only BLT.

I'm not afraid to say it. I love you, King's Hawaiian Brown Sugar Bacon BLT. I think you might be my soulmate.

With all my heart,
Emily  

http://arbys.com/our-menu/bacon/kings-hawaiian-brown-sugar-bacon-blt

Tuesday, July 14, 2015

Medical Community Issues

Ilse was born with Smith-Lemli-Opitz Syndrome.  She was a beautiful surprise, six weeks early and pretty much like a bump on a log.  She didn’t do much at all, except cuddle, which was all I needed her to do.  I expected others to see her with the rose LOVE colored glasses I did, or at least, to see her with positivity and acceptance. My family was a dream, and people from church brought meals and prayed for us because of the special needs world we’d been thrown into.  

What I didn’t expect was to get negativity and rudeness from the medical community.  I guess I was naive.  We had mostly negative encounters with drs during Ilse’s early life… from the dr who told my husband, dad, and brother-in-law that Ilse’s issues were from my obesity, and that I better get it figured out before getting pregnant again (ex-CUSE me?); to the dr who felt me up while telling me that Ilse had SLOS; to the dr who insinuated that I’d taken too much Mucinex during my pregnancy and that’s why Ilse was the way she was.  

But the one who took the cake, for me at least, was the first pediatrician Ilse was a patient of.  I’d chosen this dr on the advice of my sister, not that it is her fault it turned out the way it did.  My sister had no experience with special needs kids and who WHO would have thought that a nice pediatrician would be so horrendous.  I think it was Ilse’s 2 month check up where it happened.  The nurse casually mentioned the milestones checklist that the front desk lady had given me and that I hadn’t even looked at yet.  She said, “Dr X said don’t even fill that out, Ilse can’t do those things anyway.”

Oh my poor baby.  Poor me!  The negativity from the dr and conveyed by the nurse hit me right in the heart.  How dare she be so negative about my child?  The precious little girl who was gifted to me by God and who could do some of those dang things on that list!  Some, not all, but not none, either!  I don’t remember what I said.  I wish I’d said something amazing.  I wish I’d educated her in a kind but snappy way.  I wish I’d interviewed the pediatrician before ever allowing her to examine my precious blessing.  I wish I’d walked out of the office and never gone back.  I wish I’d never been in that situation at all!  I wish lots of things had been different in those early days.  

Now we have a great pediatrician.  Dr. Menchaca loves Ilse and treats her like a precious jewel!  I interviewed her before we switched to the new practice and told her how important positivity was to me.  I think she was surprised I even had to say that.  And now I know how to keep Ilse away from people who don’t value her and who don’t think she’s an awesome creation by a loving God.  I’m so thankful she’s surrounded by caring therapists, drs., and nurses.  And her family couldn’t love her more.

2015-05-17 10.41.27.jpg

Monday, June 22, 2015

My Tool Bag

For most of our  marriage Tim and I have been at odds over tools.  When I was growing up, my dad had all his tools organized in the garage.  Some were in a red tool chest thingamajig, some were in Tom (a cabinet that *I* will inherit), and some were hung on the wall.  He always knew were everything was.  He always hung the pictures and really only ever had help from mom on the math to get stuff straight.

Well, Tim was never a tool guy.  He didn't use them growing up and he doesn't use them now.  Even though somebody gave him a tool set when we got married and Tim's dad said to keep them in the car (I still don't understand that one) he never used them and doesn't ever know where they are. (Regardless, my husband is awesome.  This is not a Tim bashing post... there will never be one of those.)

But I love tools.  I love sanding things and sawing things and nailing things.  I built the shelves in my big closet, in Ilse's closet, and in my bedroom closet.  I love carpentry.  I love hanging pictures, whether or not I do it correctly.  For years I'd slowly been accumulating some tools.  I had my own hammer that's not allowed in the garage and I had a few boxes of nails.  But **my tools always disappeared.**  I could never find them because someone else always used them and then lost them. Chris actually rusted a whole set of screwdriver bits because he dropped it in the sink and never told me or dried it off.

The other day I just couldn't take it anymore.  I reached the end of my rope.  The rust incident was the straw that broke my camel's back.  So I spent the $21 and bought myself a tool bag.



I filled it with all manner of tools.  I love it.  It is mine.  It makes me happy.  Yes it's pink; I'm a girl. No one else is allowed to use it.  Hopefully, never again will I search in vain for a tool.  "This is my [toolbag].  There are many like it but this one is mine."  Full Metal Jacket.



A First

Today we had the meeting for Ilse's first wheelchair.  We chose this one.  We're happy with it.  Ilse chose two colors (sparkly pink and sparkly dark blue) for the frame and the seat will be pink also.



It was bittersweet having to choose a chair.  First getting to the point where we realize we need one, and secondly realizing that it might be the first of many.  We don't know for sure, obviously, but I guess I've come to a point where I'm no longer quite as optimistic, just more realistic.  I know Ilse will walk, but I know she won't marry or live on her own and *it doesn't upset me at all anymore*.  I've completely accepted it and I'm looking forward to spending the rest of my life with my sweet daughter.  She and I are going to buy a red convertible and jet around town laughing our heads off.  And we are going to eat out and go to the mall.  I'm going to love my life with her.

Others are surprised, though, when I say the above about Ilse.  They still think she might live alone or get married.  I feel bad for these people because they are living in a delusion.  And the longer you live in the clouds the harder it is to come down.

Anyway, Ilse's chair will take a while to get here... maybe three plus months.  I'm excited about the possibilities.  I'm going to buy a princess license plate for the back of Ilse's chair, and some kind of cool sticker for the back of the car, too.  

So we've entered a new chapter in the life of a special needs family.  I'm just thankful I still have my daughter to love and buy wheelchairs for.

The Dream

I had a night mare the other night, and it's the second in a row with the same theme: I'm too tired to remember anything or sound smart or sensible.

The first nightmare was disturbing because it featured me looking my dad in the face and not recognizing him, but that was nothing compared to the second nightmare.

I dreamed that I entered a contest on KCBI, one of the local Christian radio stations.  I was one of four who entered, and Tim was another of the four.  The contest involved fitting the right number of thumbs into a small space and then being x-rayed  to see if we did the right number and if they were positioned clearly.  I was holding Ilse in my left arm per usual and had chosen to smash two fingers into the space.  I had a hard time holding the position but the radio person kept giving me extra chances.  Finally it came down that Tim and I won if we could answer the final question.

The guy asked me to describe our finances and I told him we didn't have any savings, etc.  I sounded pretty decent but way too bright and cheery.  I think it was early morning by that time as the contest had begun in the middle of the night.  Then the guy asked me to solve an equation that was something like 1500(2) + x = ??.  Except I didn't hear the whole equation because I was so drowsy my mind wandered in the middle, so by the time the radio host got to the end and was waiting for me to answer, all I could come up with was "I can't do math!" in a fake southern accent... I sounded as stupid as the two following women:


and



In fact I sounded more stupid.  I knew I sounded stupid but I couldn't fix it.  I didn't try to explain.  Then the radio host moved on to Tim and he got the answer correct.  Of course he did, because he's not quite as exhausted as I am apparently.  Then we were off the air and the radio host told me he wanted to speak to me.  He said that he was sorry he sounded so hard on me, and that's when I explained my life to him.  I told him I have a disabled husband, a son with mental health issues (in my dream I told him the whole story about that), a child with a syndrome, etc.  I told him I know how to do math but I was too out of it to realize I could ask him to repeat the question because I'd dozed through it.  He was sorry but of course there was nothing he could do to repair my reputation, but at least he didn't think I was as stupid as I'd come off.

Then we were walking out and my parents met us just off the staging area.  Mom said someone had hugged her and said, "I'm sorry" to her for how dumb I was.  And my poor dad was just in disbelief.  Mom said that this was the best I'd ever looked and most fluent I'd ever spoken on camera and it was too bad that I'd just come of as.... (she paused) stupid.

Then I woke up.

I didn't even get the satisfaction of hearing how much we'd won.

I still haven't gotten over that dream.  It made me feel impotent (first definition, not the second) and ridiculous.

I hope I don't come off that way in real life.  I hope I can continue handling my life (with God's help and a huge helping of grace).