My photo
wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Monday, February 28, 2011

oh yes. how sweet it is....

Well, it finally happened.  I'm still not sure how we just stepped out and went for it, but we did.  Last Saturday, around noon, BDawg and I got in my car...went to the post office...filled up the gas tank (not at the post office)...and hit the road for Tulsa.  And drove all the way there (not that it's far away or anything, I just mean we didn't turn around! We really went all the way there!)  We checked in to our hotel (this part was sort of a surprise. I didn't know exactly where our hotel was, but I did know a little about it).  Here is where we stayed:
The Ambassador Hotel is a restored old living space-- it was originally used, I believe, for oil field workers to be able to stay semi-long term back during the oil boom.  It has 55 rooms, a fantastic restaurant (we had the lamb and the venison...and a delectable chocolate torte....).  It was restored by the same people (team? contractors? business?) who restored the Colcord in downtown OKC, but the Ambassador is restored in a more traditional hotel style, while the Colcord is restored in a more modern design.  Both are incredibly nice.  We don't get out much (this was our first overnight date in over 2 years, because of Ridge...and I can probably count on two hands, maybe one, the number of dates we've had at all in the last 2 years)...but when we DO go out, my husband knows how to do it up right.  He always picks somewhere fantabulous to stay, he lets me order whatever I want for dinner, and the icing on top of the torte for this trip was my surprise Valentine's gift I'd been given a few days prior to this weekend :

  I'd been hinting about this concert for months.  Tickets were all snagged early so they were sky high. I told you my husband does things right in this department.  He got us a pair of tickets, while I was totally resigned to the fact that we weren't going (and I was okay with it).  But after we got checked in to the hotel and got all ready for the concert and headed down to the fantastic dinner...we then loaded up with the hotel's driver and he took us to the Brady, which was the perfect venue for the Mr. Taylors.  I am a big fan of both James AND Ben, so this was fantastic!  The Brady holds about 2500 people I believe, so it wasn't overcrowded really (I mean, IT was because it was full, but there weren't 18445723486 people there).  I wasn't sure how the concert would play out set-wise, because I didn't know if Ben would open and James would follow, like traditional concert order or what...but it turned out to be the greatest possible set up for someone who loves both of those Taylors!  They sang pretty much every song together, some of James' biggest hits, as well as some of Ben's songs.  Ben took some solos on James' songs, James sang with Ben, etc etc- every song was performed together by the father son fantabulous duo.  They each did one solo song- Ben right after intermission and James right at the beginning of the encore.  We had fantastic seats and everyone was so nice.  Everyone behaved appropriately (scene back to a Michael Buble concert we went to....a few WAY OVERLY inebriated high school girls were in front of us and they ruined the entire performance because they didn't know how to act.  seriously.  have some class, people.)  The show was about 2 hours, including the intermission, so that was a bit of a bummer for me, because I figured the show would be that long after the opening act.  So since there WAS no opening act it would've been cooler if they performed a little longer....but...I will try to not to be greedy ( isn't like those tickets were cheap).  Anyway, it was a super fun time!  We had to wait what seemed like forever on the driver to pick us up but we finally made it back to the hotel out of the cold.  The next morning we went to breakfast in downtown Tulsa and then headed home to see our boys, who were napping, but were glad to see us (especially Ridge, who had somewhat of a difficult time without mamamamamama). 

Here are some pictures. They all look the same, but I promise they are not all taken at the same time :)  I have some video but haven't uploaded it yet.  I'd go back to this concert in a second-- this was the first time Ben and James have toured together, Tulsa was the first stop on this tour, Ben is only touring with James for the first month or so of shows, and they performed a few of James' songs that had never before been performed in concert.  So it was a night of firsts, and it was neat to get to be there.  It might be forever before we get to do something like that again, but it was a great weekend! I know some of the pics are blurry...I forgot to turn my flash off on a few of them (don't worry- I did get in trouble for it!)

Friday, February 25, 2011

two in a week? well, i'm trying

Ridge got blood this week.  At the infusion "clinic" or room.  Which meant he arrived around 9 AM and got to come back home around 430 PM, which is still a long day. But much better than arriving at 9 AM and the blood not even getting there until 3 or 4 PM, bc THAT has happened before, more than once.  Which means we have to stay the night.

I am planning on doing a little packing and tidying up around here today if the kids cooperate....bc tomorrow, the hubs and I head out to see James Taylor.  Everyone can be excited for us, I'm excited!

I have had a heck of a week, to say the least.  Ridge is doing well, Sawyer is doing well other than we are totally in the back talk/rebellion stage (take 1 of it I am sure, I know even if it dies down, it will be back one day, as a teenager or whatever).  Nothing new with BDawg.  Nothing majorly new with me, just encountered some ridiculous stuff this week.   You know those things that just make your jaw drop, or make you think "Are you KIDDING me?"  Stuff like that.  Always super to deal with.

So at the culmination (I hope) of all of THAT crapola, I got this email...which I had read before but had not really READ well because I wasn't to that place yet, that place where I'd understand it.  And I can honestly say some of you probably won't understand it, simply because you haven't been in this position (and I am thankful that you haven't).  But this is a little bit of a glimpse into how our world has felt, and still feels so often.  It is a strange place to be, sometimes, our new world...and it is even stranger when you feel ready to step into your old world but don't exactly know how, and are met with some hesitancy and opposition and obstacles to that.  Some things you expect or at least they don't surprise you, but other times it feels like you are fighting a senseless battle, one that you didn't ask for.

Anyway, here is a small glimpse, of how our life sort of feels.  It is terrible and wonderful all at the same time, some days.  I have seen miracle after miracle and a God more faithful than any human, and I know that He has yet to fail us, and He will never fail us.  He has provided above and beyond all expectation, sustained our life, even if on some days we feel we are barely surviving.  He has been so faithful.  And if He has carried us through the valley of the shadow of death, I'm here to tell you, there is nothing my God can't do- even in the face of opposition.  And that is something no one can take from us.  He is the same. Yesterday. Today. Tomorrow. and Forevermore. ya go...our little 2 year vacation, and somewhat permanent one, to "Holland"

"Welcome to Holland"

 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.

Monday, February 21, 2011

leftover soup

not really. i know some people who clean out their fridge and make stew out of whatever's in there...we don't do that over here.  i don't have the stomach for it.  especially not today.  i don't know if i'm sick or something didn't settle right or yuck yuck yuck i have no idea but my tummy is notttttt happy right now.  and while i am sure none of YOU would dare ask, there are some who, most definitely the tummy being upset is not a code term for "there's a baby in there." there isn't. i would know.  yes, i would.  tummy ache...therefore, the blog post. what else am i supposed to do just sitting here?

so i will share our leftover soup with you- everything you've missed since the last blog posting.
1) new design.  i'm not finished, bc well, i took the background from blogger's templates, and while i like it, i'm also a bit of a free spirit and have an insane desire to create things.  so i need to put my spin on it.  nothing fancy.  just something i at least tweaked a bit.  and with a bit of a facelift comes my desire to want to blog more...but wanting something and having it aren't the we shall see.  but sometimes wanting something and having it  actually are the
2) the james taylor/ben taylor tickets my husband surprised me with on Valentine's Day.  that's right people...t minus 6 days and we'll be in floor seats/aisle seats, living a dream (i know, not the loftiest of aspirations....but you can't go wrong with james...and, frankly, his son ben is just as talented,  IMO).
3) i just got back from a weekend away with five of my seven closest was completely unexpected and the circumstances of our "reunion" were not good to say the least...the mother of one of my dear friends was killed this past week in an accident...a tragedy no one could expect...and while i knew her beautiful mother less well than my other friends, the times i had been around her, she was always smiling and warm...but i do know my friend, well.  and she too is most always smiling and warm...and as beautiful in every way as her mother, i am sure.  so we had a little reunion.  it was sad, it was happy, it was fun- it was a celebration of liz's mom, and it was also a celebration of other new life- i got to meet the two newest additions to our circle of friends-- babes born this winter....and how sweet they are.  i also have been listening to "A Thousand Splendid Suns" on CD (I listened to it most of the way there, and most of the way back, and am not quite finished yet.  a must, listen, in my case.) have to stop this.

4)i am somewhat behind on sewing.  thrilling news, i am certain.
5) i am ready to repaint my kitchen- including, but not limited to, the walls, the cabinets, the hutch, the kitchen table. for reals.  spring break, get ready.
6)we have been working with ridge some on language devlopment.  the other day when brandon walked in the door ridge laughed and said "da da" which he doesn't usually say (i know, he's old enough to talk, but he isn't yet-- for those of you who don't check in regularly...i am aware he is not "on track"...but a year ago, two years ago, this part of his future was the least of my concerns).
7)sawyer is gearing up for spring t ball.  we shall see how it goes.
8) i've been rocking my grocery shopping using coupons. yesterday, small recap, i got two jumbo packs of pampers diapers...two tubs of pampers filters, two toothbrushes, ponytail holders, dish soap, and two cans of pringles for $14...and left CVS/Walgreens with $7 credit to spend next you could say I got that stuff for $7, instead of $14.  sometimes being frugal is so thrilling i just want to throw my hands up and scream like i'm on a roller coaster.  except that doesn't sound great on this stomach.

I am so ready for the sick season to be over and to head to church again, and head to the zoo, and maybe even the park.  We have a meeting with Ridge's primary physician over spring break..there, we will definitely be discussing the option of removing Ridge's central line. THAT can totally happen, as far as I am concerned. The boy needs a good 8 hour scrub down from missing almost 2 years worth of normal baths!

So.  I like those leftovers better than the ones that are probably in my refrigerator.   Which means I better go make some supper, bc these words aren't going to look very scrumptious on a dinner plate.

Sunday, February 13, 2011

love is in the aiiiiir.... yeah.

Okay, I'm about to head out the door to go buy a few groceries, so this will be (short) if that is possible.

Ridge: will be 2 in April. Is doing great! His hgb is low 10s right now, so close to being a need for transfusion.  He hasn't had a transf. in almost 4 weeks (wed. will be 4 weeks).  He has bled twice in the last four weeks without needing to get blood- THIS IS NEW FOR US!  TWICE!  We are one step closer to that stinking finish line, AAAAAAMEN!  He got a new haircut and looks so grown up.  A good friend of mine evaluated Ridge the other day and was able to tell me as far as his understanding/cognition goes, he is at least 6 mos ahead of his "age"....however, as far as his speaking goes (if you didn't know he couldn't talk like the rest of us can, he can't yet.  still baby talk/babbling/incoherent, but can clearly get his point across!)-- anyway, his speech is about 8 months behind.  This is to be expected with his hospitalizations.  So no worries, but we do have a few things we can do with him at home and in a few months when he is 2, we can discuss reevaluating him if that is necessary.  So...he's smart!  Supa smart, I say, but just can't say what he's thinking, so he gets frustrated. was a great visit and put my mind at ease.

Sawyer:  Is getting bigger every day.  He is a good helper and he pushes all the buttons all the time-- arguing, questioning, wondering, why-ing...I know it is a phase and it will pass and one day I will miss it, but today, I wish I could miss it!  But he is so sweet even in this phase.

nothing really new with B Dawg and I.  We went out for Valentine's on Friday night.  it was good to go on a date, it was good to not rush and sit at dinner for 2 hours or so and not care that we were just piddling.  We ordered whatever we wanted (uh, if you don't go on a date for a really long time you can pull out all the stops on a splurge now and then!).  It was good.

I think that's about it.  I've thought of so many things I wanted to post over the last week or so but I just have not had time to do so.  I'm sorry!  I will try to do better- even if just for me, because I like to use this blog as kind of a journal/record for myself anyway. Although I did just get an amazing new planner that I'm going to try to use similarly-- for basic facts, like hemoglobin stuff...not for the emotional side of things. I will save that for you all to read here :).  I do want to post in the near future about some money saving things we have been doing around our house, because they might be something you want to do too, even if not for financial reasons!  

Have a great Valentine's Week!