Monday, January 31, 2011

Bare Necessities

Come on, people. Its a classic. And its been running over and over in my head. So, here is my present to you. Learn it. Sing it. Love it. Thank you Jungle Book and Walt Disney.

You know how you found out what is really important to you? Your husband is at the store hours before the storm starts which will bring a projected 10-13" of snow. He asks you what you need for the next few days. What do you say? I'm a sensible girl. So I said...

  • D batteries for the flashlight in case we lose power (we were supposed to get ice too)
  • plain bagels (because my stomach has hated me lately. this is breakfast and dinner)
  • caffeine (which for me is pepsi--just can't do the coffee thing. again, the stomach)
Things that also came home with him...
  • individual packaged toblerone (the one kind of chocolate he knows I like)
  • habanero BBQ almonds (you guessed it--not for me)
  • tylenol (is he trying to send me a message? does he think he'll need this after 2 days at home?)
  • de-icer (more) and another scraper. (i probably lose 2 or 3 every winter)
Are these the things I can't live without? Close. Very close. The other necessities of life for me are British Breakfast Tea (which we stocked up on Saturday), magazines (my Good Housekeeping came just the other day), and books (there are three sitting in front of me right now. I'm just trying to keep up with Brian. It can't be done--even by an English major).

So, what about you? Lets hear from the peanut gallery...what are your bare necessities?

Tuesday, January 25, 2011

Dang you, springtime jitters

I know its still January. I know. But my heart is ready for April. I feel like I fight back the springtime jitters earlier every year. Perhaps the last two days of blue sky that followed the last two months of gray is causing the problems. I have a little nook at the top of our stairs where I adore sitting in the mornings--reading, writing, whatever.

I use it so often it has become like every other room in my house--messy or "lived in" as I prefer.

And, besides writing on the blog this is what I am doing up here now. The midday snack of champions. Do I like throwing myself under the bus? No, but thanks to jami I am trying to be more transparent, but with discretion, for your sake.

Two days ago out the window all I saw were icicles weighing down my gutter. Yesterday they were all dripping and a few fell. Today--no icicle in sight. Delightful! Whatever the cause, my springtime jitters will not be stifled. The last 24 hours I have started one house project (sanding the banister to repaint and carpet--whenever) and thought of a million more I am ready to get working on. Already I can tell I am biting off more than I can chew this year.

Livi's CCVI (Children's Center for the Visually Impaired) teachers just left. Now I have a million and one ideas for how get her to learn things on the computer while I am cleaning/cooking or doing any number of very domestic things while wearing an apron. (giggle) The problem is, I have to create them all in PowerPoint. Awesome? Yes. Time consuming? Yes.

I have also considered how early is too early to start my herb garden--indoors of course until its warm. I know. It is too early. But there's nothing wrong with planning, right?

And (yes, there is more) my daily emails from zulily (this totally awesome website with discounted goodies for kids, moms, and women) has now yielded two pairs of sandals for Livi--one with the squeakers of course, and since this morning one pair of flat-like-sandal thingies for me.

All of this I did while dreaming of City Market on Saturdays. Yummy. Too much springy thingies too early? Probably. But I honestly can't help it. Guess spring will either have to come faster or I'll just have to live in my delusion for a few more months.

Sunday, January 16, 2011

the valley is the place of vision

I realize that lately in our blog posts I have begun to misrepresent myself and this family. There are alot of things to be grateful for in our life, but that is mostly what I share with you. There are hard things too, but its easier for me and easier for you if I just don't bring them up. Just as a warning, I am going to bring some of them up.

While we are very excited about the new wheelchair Olivia will hopefully be receiving in the next few months, and excited about the Trolley run and about all the new things she is doing in therapy, there is always another side. About a month ago Olivia started having longer seizures of a different kind. They are still a little scary to us because she stops breathing for a few seconds, but sadly we have gotten semi-used to them by now. She was only having them every few days, but this went on for the whole month. Eventually we called her neurologist and they increased her medicine last Monday. On the note of things to be grateful for, we have not seen another long seizure since then (not that we won't). But Olivia also has (I presume from the medication increase) been sleeping the majority of the day--about 18-20 hours. While a lot of moms wished their kids slept more, this isn't a relaxing time for me. She is sleeping, but I know why and I spend that whole time worrying and thinking about her future rather than washing the dishes or doing laundry or anything productive.

It has been a hard week for us. The middle of the day, especially if we don't have plans, I find myself sitting and thinking--becoming discouraged. And this is really what I wanted to tell you: that this particular reading has been giving me a lot of hope. Its from a book of writings by the Puritans who focused a lot on meditation and prayer. Actually this particular writing is in the introduction. I haven't gotten past it, because every time I feel discouraged this seems to bring me back. I hope it encourages you too:

From The Valley of Vision

Lord, high and holy, meek and lowly,
Thou hast brought me to the valley of vision,
where I live in the depths but see thee in the heights;
hemmed in by the mountains of sin I behold thy glory.

Let me learn by paradox
that the way down is the way up,
that to be low is to be high,
that the broken heart is the healed heart,
that the contrite spirit is the rejoicing spirit,
that the repenting soul is the victorious soul,
that to have nothing is to possess all,
that to bear the cross is to wear the crown,
that to give is to receive,
that the valley is the place of vision.

Lord, in the daytime stars can be seen from the deepest wells,
and the deeper the wells the brighter thy stars shine;
Let me find thy light in my darkness,
thy life in my death,
thy joy in my sorrow,
thy grace in my sin,
thy riches in my poverty,
thy glory in my valley.

I realize that to a lot of you this may sound crazy. And maybe a while ago it might have sounded crazy to me, but living through the things we and lot of other people have lived through, you understand that the things you see immediately are not the only things that matter. Sometimes, the things that matter--the hard things--only come when you cannot be any lower. These truths both sustain you and are the song you sing throughout the rest of your life. For the first time you can see how all those paradoxes above are not only so very true, but not actually paradoxes at all. For me this week: there can be and is joy in sorrow. Maybe not in the way people conventionally look for it, but in a special way that takes the life of Jesus to understand it.

Thursday, January 13, 2011

"Someday" may come sooner...

Do I think about a day when I don't have to heft Olivia around and she is moving on her own? Sure. Do I think about it being anytime soon. Not really. Not until yesterday, anyway.

You'll have to excuse me, I ball like I baby everytime I talk about it still, but here it goes.

Some of you might remember the 'demo' we were going to try out at therapy last week. Well, it didn't happen last week, but yesterday we got a chance to see how Olivia looks in a Kidwalk. Then I knew if we were lucky enough to have one of these walkers/wheelchairs 'someday' would be a lot sooner.

It looks ordinary enough, but looks are deceiving. It is a combination wheelchair (with the seat folded out) and walker (with the seat folded in). I cannot explain it, but you will have to see the video. Please take the time to watch it. You won't believe it. Imagine my girl prancing through preschool, church, or our front yard this summer. She'll be such a hoot! I believe my mother-in-law said it best when she said, "Look out, Tugger" (our 65lb. dog.)

Wednesday, January 12, 2011

Lace up your runnin shoes...

If you are a Kansas City native, you have probably heard of this race before, but you might not know why they run it. This race goes entirely to benefit a Kansas City organization called CCVI. They are a wonderful organization that works with blind and visually impaired children through many programs including in home teaching and therapy and an on site preschool. Olivia is currently part of their infant program, which means we have a teacher in our home once a week. In the fall, we plan to have Olivia attend their preschool. Olivia is not blind, but her onslaught of seizures had impaired the path that information takes from her eyes to her brain. In essence, her eyes see fine what is in front of her, but her brain often misinterprets it or doesn't interpret it at all. Due to their teacher (thanks, Kathy!) Olivia has made great strides in her visual functioning. Now its time for us to try and give back.

We will be walking/running in this race as a family team and there are two ways you can help us. If you plan to be in KC on race day and want to run/walk then you have to register with our team. We would LOVE to have you. The registration fee is $30 pre-race. If you cannot attend, you can still help us by raising money. Our team goal is set at $1000, but we would LOVE to raise more. You can also go to our team page, but instead of registering as a participant, you can donate.The buttons are pretty self-explanatory. Please pass this information on to whoever you think might be interested in giving.

Here is the link to our team page (our team name was chosen by Grandpa Don- way to go!)

We would really love your help in raising money. This is the easiest way for CCVI to give scholarships to children and their families for in home care or preschool. The money can also go to supplies or field trips. CCVI does a ton of good in this city, specifically for us as a family and we want to say "thank you".

If you have any questions please feel free to email me:

For information on the run go to their website:

Monday, January 10, 2011

Finally, some pics

We've had a busy couple of weeks, but here is a small glimpse of what we've been doing. This is Christmas Eve with Livi all dressed up. I LOVE this picture of Olivia. Beautiful!

So, I was hoping to be able to post that Arkansas was the winner of the Sugar Bowl. Not so. But we had a great little get together to watch with some friends and I got to use my razorback cookie cutter again this year.

I think I took this last picture sometime last week. I just think its funny. We must be getting ready to do her breathing treatment. No matter how much we do it she doesn't ever get over it. Apparently, right?

I also finished that book, but I will wait to give my official assessment in another post so you don't tire of me. Suffice it to say I respect this woman and the ferocity for which she loved and advocated for her son. Thoughtful. Inspiring. Emotional.

Saturday, January 8, 2011

New Book

Ok, so I swear I have some really great pictures from the last few weeks but my computer is conspiring against me, so despite my many attempts to put them up on the blog for you, they will have to wait for another day. But I do have something I want to tell you...

Today, on our very overdue date, Brian and I wandered into Barnes and Noble on the Plaza--which is convenient because we happen to have gift cards there. Thank you, Santa. I needed to get a planner, but I also wanted to check the "children with special needs" section which I am usually disappointed by. On all other occasions the total of the books in this section address mostly ADHD and Autism Spectrum Disorders. All important information, but not helpful for our specific situation. Today, though, I found a welcome change--I think.

I bought a book--memoirs of a woman who was a mother to special needs boy much like Olivia. He had Cerebral Palsy (probably the closest diagnosis we will get to Olivia), a seizure disorder, but he was also quadriplegic. I was so happy to see it, like it was a story about a family member or something. I had to buy it.

I think Brian thinks I'm crazy. Of course the book is going to be really sad. The boy, Jesse, died in his sleep when he was 17, but the story is about his life. To me, the sad parts are worth wading through emotionally to enjoy the laughs, and the back jacket promises plenty. I hope it feels like a close friend. We will see. I'm sure my all empty day tomorrow will allow for plenty of reading/crying time.

Oh, here's the link: Knowing Jesse. Also, good luck to Brian and our friend Wes who will be freezing their tushes off at the Chiefs playoff game tomorrow. I was more than happy to give up my ticket and keep my warmth.

Thursday, January 6, 2011

Headlines today

I never, and I mean NEVER do this, but I am going to post the latest article about Dr. Wakefield, the main Dr. in the studies of the link between vaccines and autism. I am not stating an opinion about it, or encouraging others to do so, especially on the blog, but it is such a big story and huge in the medical community, especially with the parents of special needs children. Please just read it and try not to leave anything nasty in the comments. Informational purposes only...

Sunday, January 2, 2011

Christmas overview

I have done a terrible job updating the blog and I did an even worse job taking pictures over Christmas. I do have a few and you can have them later.

The last two weeks have been a whirlwind. Brian had his final for his class last semester about the time he was asked to preach at our church for the first time the day after Christmas. We got to spend some time together, but my husband the studier just couldn't concentrate on Christmas 24-7 until after the sermon was over. He did a wonderful job and you can listen to it if you want by going to the church's website and then clicking on the resources tab at the top. The link should be there with his name. We are so very proud!

The few days before Christmas Nana and Papa came from TX and we had a wonderful time! We mostly concentrated on relaxing and having some fun which was a wonderful change of pace for all of us! We had such a good time with them and hated to see them go!

24hrs after they left we packed up and headed to Joplin to see my family and so that I could be in my best friend from high school's wedding on New Years Eve. The whole week was a blast for me, but Olivia and I were the only one's who escaped whatever sickness this is going around. Brian even had a fever--which is like death for him because he NEVER gets sick. He was a real champ about it, though, which is good because I was too busy going to parties and rehearsals to take care of him.

We just got back home last night and its back to the real world already. I made my very unpleasant to-do list for the week. Mostly calls to insurance companies and stuff. I hate that, but alas, it must be done.

Towards the end of the week I will probably post some pictures because Olivia is scheduled to demo some new adaptive equipment on Wed and maybe Thursday. We are really looking forward to a way to make walking easier for her and for me too!

Hope everyone had a wonderful holiday!