Monday, August 31, 2009

Bucket List

Have you seen the movie? Bucket List...It's one of those really good ones. The kind that make you think. The characters in the movie are dying from cancer or something terminal and decide to do the things on their bucket list...the things they have always really wanted to do their entire lives but never have. I have a bucket list...
  • visit New England in the fall
  • shop Pike Place market in Seattle
  • go to a Broadway play in New York City and do all the other wonderful things in NYC
  • raft through the Grand Canyon
  • sail around Martha's Vineyard
  • drive Route 1 on the California coast and tour the Napa Valley
  • feel the spray of a waterfall in Hawaii
  • experience the power of Niagara Falls
  • see the Eiffel Tower
  • take a Mediterranean cruise
  • dance the night away in Spain
  • watch the wales in Alaska
  • eat Italian food in Italy and stomp the grapes at the vineyards
  • ride a train in Europe
  • hear the music of the greats performed in their hometowns
  • find a cure for Batten Disease
  • see a miracle healing for my baby girl

There is more, but I cannot think of more right now. I would love to cross off the last two things on this list most of all.

Sunday, August 30, 2009

Torn Sails

(Author warning: it's Kelvin)

So, how do you describe a hole in your heart? Well, let me try, and probably more for my benefit than yours.

The terrible disease with the Battens moniker which has ravaged little Emma's mind and body has without a doubt taken a toll on us. The hole in our hearts is not a pierce, but instead is a ripped apart section, where the edges are jagged, fresh and won't heal. Visually, picture a damaged main sail of a great ship. It is the only source of power for the vessel, it continues to work, but lacks efficiency and certainly beauty. The fabric is all there, flapping fiercely in the same winds that ripped it. Even in the dark of night the flapping reminds you it is there. The ship still moves, in a fundamental manner, point A to point B sort of stuff. It still keeps its bow pointed into the waves and moves forward, only slower and without the tactical abilities it once had.


Eventually, the winds will tear away the tattered, flapping edges. The night will be quite as the wind blows through the void. We will try to fill the void for the sake of the health of the ship, but the fabrics won't match, the stitching will be an eyesore and the hems will require constant repair and attention.

To be sure, we must also look around the rest of the ship. We are surprised how well the rest is doing. We are surprised she still handles the waves so well, given the loss of so much sail. We seem to make port on time, navigating channels and straits without alarm. We see the rudder is intact and functioning, but a rudder without forward movement is no more useful than another anchor. We then look to the sideboards and notice a change. Strategic holes now fill each side, with long sleek oars extending through them and into the water. Listening closely we hear a low voice..."stroke...stroke...stroke..." Each side of what was once our single occupancy ship is now being powered be teams of rowers. Most hide their faces, seeking anonymity. But looking closely we see who they are. They are friends, friends delivered in the night by a gracious and caring God, a God who sits in the fore of the boat, quietly whispering ...stroke...stroke...stroke...




Friday, August 28, 2009

A Theory For Your Consideration

As adults we all talk about how time passes so quickly. Heck, I'm still worried about my computer crashing on Y2K and that was almost 10 years ago. Christy is out of the house tonight playing Bunko, so I though I would share my theory with you about how our perception of time changes with age. You may think such a topic doesn't belong here, but oh, it does. It is very relavent to the cards we have been dealt.

Kelvin

Enjoy...

Perception of Time vs. Life Span


We talk about time as soon as we can conceive its existence. As children the hour drive to grandma’s house seems like punishment for stealing candy. Hearing that Christmas is a month away makes us wonder if it is worth waiting for. All children believe there are 48 hours in a day and 36 months in a year.

Today- not so. As adults we complain that the days are reduced to 8 hours and there are only 5 months in a year. So, why does the perception of time change with age? How can a young boy think driving to the family vacation in Colorado ruins the vacation while as an adult he thinks 6 Red Bulls and 1200 miles of pavement represent a peaceful night of “alone time”?

I have a Time:Life Span Theory. It is a simple and self derived theory. It is as follows:

Our definition of time is determined by our life span, where our current days on earth always equals 100% of life. In turn, our perception of a given time period is expressed as a percentage of our entire life.

Algebraically, the theory is reflected in the expression P= 1/ (LS/T), where P equals perception of time, LS equals life span and T equals time. An example from childhood would be a 6 year old waiting a whole month for Christmas (all time represented in days):

P= 1/ (2190/30)
P= 1/73, or 1.37% of life

The child believes the one month wait for Christmas is 1/73rd of his entire life. We give no credit to future expected years, regardless of age, because we can’t truly understand a longer life until the sun sets on those days.

Now, let’s look at the 6 year olds parent who wakes up after Thanksgiving and realizes they have only one month until Christmas. The 40 year old adult perceives the month in this manner:

P= 1/ (14600/30)
P= 1/ 486.7, or 0.2% of life

So, the child feels like the same time period takes 6.85 times longer.

The theory is farther dramatized when we talk in years. Ten years for a 50 year old is P= 20%, while a 20 year old thinks of it as P= 50%. The 50 year old sees 25 years in the same light as the 20 year old sees the 10 years.

Conclusion: We never think we will get old until our potential years remaining are less than the years behind us. Then each year passes faster- do the math!

Thursday, August 27, 2009

Guess who's 5 months old today?




Yep, it's true, Cora LeeAnne Dunnam is 5 months old today! I. can. not. believe it! She's growing up to be such a sweetie! She's rolling over, smiling at everyone, stealing hearts, scooting all over the floor, grabbing things and chewing on everything! She's starting to slobber too. Just waiting for a tooth to pop through. Happy 5 month birthday Cora!

Today Emma had physical therapy in my friend's pool. She did pretty well. As with most things, she likes it for a while, then she's ready for a nap or a new activity or a nap or the next meal or a nap. (Did I say a nap? She wears out pretty easily. So naps are her friend.) We also met with a really great team of ladies, including a nurse, with a palliative care group. They will start coming to the house to check on Emma, see if she needs any new medications, give us whatever support we need as a family, and do whatever Emma needs to make her more comfortable. They even provide a service if we need it where they will stay up at night with Emma so we can sleep. Right now she is doing pretty well in the sleep department, so I hope I didn't just jinx myself.

Wednesday, August 26, 2009

First Day of School

How cute is she in this outfit!? And how in the heck did she get so big?!



Sittin pretty in her new desk at school

Her new teacher, Mrs. Thomas...God bless the teachers!


Ready to roll to kindergarten


Learning where everything belongs


Love the new (Carleigh's former teachers)teachers, Mrs. Berger and Miss Pages



Mrs. Becky came back today for school!

Like the beans




Hope your first day was great too!

Tuesday, August 25, 2009

Rolly Polly

Cora has mastered the complete roll over now. I tried to get her on video, but she wouldn't cooperate. I'll keep trying. She is also trying to scoot and pull her knees up under her to crawl. I'm trying to discourage this behavior. Golly wolly, I'll be chasing her around the house before I know it!! This evening she scooted herself across the entire den. Whew, am I in trouble!

When's the last time you could do this and enjoy it?!







And how cute is this precious ponytail?


Tomorrow is Luke and Emma's first day of school, so I'll posts everyone's first-day-of-school pictures then.

Monday, August 24, 2009

Double Bucket and School Days

Whoever invented to stomach virus should be shot in the foot. It's the worst kind of sick to be in my opinion, which counts for a lot since I was the one up all night being sick. I think I'm starting to get better now. I really thought I was going to die last night. I even had fever. YUCK!

Carleigh started second grade today. I'm really struggling with having a second grader. I mean, how did that happen? She was just in kindergarten yesterday! Kelvin took her to school today. I think she looks so cute in her first day of school clothes. She wanted to wear the cutie patootie hat to go with her outfit, but it's made out of sweater material, and it is still 100 degrees out, so I convinced her to go with the darling butterfly ponytail holder instead. Although, I can't wait until it does cool off because she looks so darn adorable in the hat. This is the first year since she started with the 2 year old class I haven't taken her to her first day of school, so I'm a little bit blue. I can't wait to show you the pictures.

Luke is psyched about starting kindergarten Wednesday. I think he is just itching to read like Carleigh. He took a week long reading camp this summer from his kindergarten teacher and did really well, so I'm sure he'll be reading in no time.

Fun stuff...wish Emma could be enjoying the three year old class with Mrs. Mayfield this year. She would love her just like my other big kids did. They learned so much in that class, and did so many fun projects. Emma would have loved learning about how
"Cowboy Dan was a mighty fine man and a mighty fine man was he. He called for his hat, and he called for his boots, and he called for his horse named Lee. Yee Haw!"

And she would have thought the pancakes and pjs day was the best. I know she would have loved the ice cream sundaes they make at the Valentine's Day party. Instead, I'm going to inquire about aquatic therapy at our local rehab center. I think she may really enjoy the water. She liked it so much on vacation. Her home bound teacher comes on Wednesday. It will be good to see her again. And she'll continue with OT and PT like she's been doing. Throw in a couple of massages in the month, and she'll be a busy little girl.

Have a great Monday!

Saturday, August 22, 2009

Luke

So, Luke and Emma and I are hanging out this afternoon listening to a little John Mayer live in LA. (Emma was really digging it too, I must say. Or should I not say 'digging'? She liked it a lot.)



Luke and I are watching his guitar skills, and I say, "are you going to play guitar like that when you get older?" Luke replies, "you don't let me touch Daddy's guitar." I say, "maybe you should ask for one your size for Christmas." Luke ponders this and shakes his head yes for a moment, then replies, "I'm going to ask for a tuba." I say, "a tuba is kind of big, don't you think?" to which he replies, "no, it fits on my waist like this" at which point he demonstrates how he will wear his tuba, then proceeds to oom-pah several notes. After his tuba demonstration, he then smiles and changes his mind..."I want a harp!" I say, "Luke, a harp is taller than Mommy, and as wide as this recliner!" He says, "no, I thought they were as big as Cora! I want a harp!"

Gotta love that boy!

Friday, August 21, 2009

Flashback Friday

I have probably said here before, (but hey, it's my blog so I can say it again, right?) that I remember when Emma used to sleep in our bed sometimes, and in the morning she would climb down, and walk into the kitchen all sleepy-eyed to find me. She would, of course, have her pacifier, hair all a mess, and would tell me in her own way what she wanted. (Remember, she only ever said "Dada" and "uh-oh.") It was usually food. The girl could eat! I loved those times. I miss those times. I wish with all my heart she were healthy, sleeping with her big sister in their pretty pink room.

She's not going back to preschool this year. With each new setback, my heart aches a little bit more. Just as I can't imagine loving her more, but every day I do, I can't imagine my heart aching anymore, but somehow it does too.



Wednesday, August 19, 2009

Just another day at the Dunnams

You never know what you're gonna get on any given day at the Dunnam household. Tonight was "see how many arm/leg farts you can do in 10 seconds" night. Luke cranked out 38 one time! Carleigh came in at a close second with 32. I know you wanted to know that. Today while we were swimming, my sweet friend shared how she was so proud her son had learned the art of the arm fart from my son, I'm sure and was showing it off to whomever would pay attention recently. I think they may have been at a restaurant if I'm not mistaken. What can I say? I'm a proud mama.

We finally got some rain around here, and it cooled off the pools a little bit, so we took the plunge today. The kids had a good time. I took Emma too. She seemed to enjoy it for the most part. She definitely lets you know when she's had enough though. Luke is getting braver when it comes to getting his face in the water. I think he's ready to retire the floaties, but he's just not quite confident enough yet. Maybe next year. Carleigh has really blossomed in the water this summer. She was pretty timid last year, but now she's a little mermaid.

We are taking Emma to the genetic doctor tomorrow. Hopefully they will do some blood work and not just ask us a bazillion questions. We need to isolate the screwed up DNA marker (I really don't know what I'm talking about here) so we can have the other kids and nieces and nephews tested to see if they are carriers for Batten Disease. I hope no one is. `

Monday, August 17, 2009

Life on Planet Mom

Life on Planet Mom is the new logo for MOPS (mothers of preschoolers) this year. How fitting since I feel as if I'm in my own little universe most of the time. I feel like my life and my head are spinning uncontrollably most of the time. I'm in sort of a fog...kind of like I'm outside a room looking in on the goings on around me, but I'm sort of detached from it all. I'm sure it probably has something to do with the fact that I'm watching a wretched disease take over the life of my baby girl. My precious soulmate and I are mourning the baby girl we once knew as we hold the baby girl she has become. We love her the same but now long for days gone by when she would run around the house and laugh and play. We are forever changed by the life of our precious baby girl. Her life has made such a tremendous impact on our lives as well as those we may never know.




Found this video of a great new song by Selah this morning on Kelly's blog. I look forward to the rest of the new cd...
(don't forget to pause the music on the blog first)

Saturday, August 15, 2009

10 things I love about this girl

There are a ton of things I love about Emma. Here are 10 of them...



Not the greatest picture, I know, but can you tell they are painted?! Thank you, Whitney. We thought since Carleigh and Bailey had a pedicure on vacation, Emma should at least have her toes painted. Aren't they cute?! I thought you might agree.

Have a great weekend!

Wednesday, August 12, 2009

Not so wordless Wednesday


"Take our picture, Mommy!" Carleigh is such a sweet big sister. She loves to take pictures with her siblings, mostly her sisters. The other day she was talking to me and asked if I wished Batten Disease only lasted for a day. I told her I wished Batten Disease would just go away. She agreed. I think it is harder than we will ever know for this big sister as she struggles with her little sister deteriorating before her very eyes.



Emma does this cute thing where she raises her eyebrows and moves her eyes back and forth when she hears something new or familiar or when something is interesting or exciting for her. It's sweet to see her do that when Carleigh or Luke talks to her or when Cora cries out. You should have seen the coveted smiles Kelvin was getting last night when she was getting his full attention! Priceless!! I wish I could take photos with my eyes so I wouldn't miss the flashes of happiness that comes from my little angel girl. I will just have to tuck the image in the favorite memory file of my mind.
Before I forget, the neurologist called today and said there was no seizure activity on the EEG. There were new irregularities on the temporal lobes which suggest seizure activity is likely (I think I'm repeating this correctly) but nothing to suggest we need to increase her meds at this time.
Stay tuned for more from the Dunnam household and their summer activities with pictures hopefully tomorrow. Have a great evening. Wishing you cool evenings, bright stars, and a shower or two if you need one!

Tuesday, August 11, 2009

Love my friends

I have ever mentioned that I have the best friends in the whole world? I do, really. A couple of weeks ago, my two friends, Jana and Rachel, came by and got all four of my kids, and took them to The Painter Potter (I think), and made this beautiful hand print platter for me.





I love, love, love it! My precious friends also brought us some of the yummiest enchiladas and roast I have had in a long time! THANK YOU guys, you're the BEST!

I got tears in my eyes when I read the platter. I've thought about Emma as a butterfly for a long time now. I imagine her as being in the cocoon right now, restricted, not living to her full potential yet. When she emerges, she will fly freely. No pain, no cares, just freedom. When I see a butterfly I think of Emma and smile. She's my beautiful butterfly...

If I were a butterfly, would you be a butterfly?
Would you fly away too?
Cause I would fly.
Yes I would fly.
I’d be anything with you.
Yes, I’d be anything at all with you.

from Lullabies by Laura Kaufman

Monday, August 10, 2009

10 Random Things About Me

Bobbi over at Casa Camacho awarded me this...



I love reading her blog. She's always doing such cool projects with her kiddos! One day, I'll actually follow through with a project or two with mine.



I have to say 10 things about myself and then pass this award on to 10 other people.

Ready, set, here we go...



1. Sunday afternoon naps (especially when it rains) are the very best! I need to work on getting one more often.

2. I love the peacefulness that comes with watching a baby or child sleep.

3. Cruising in a boat in the evening on a hot summer day, watching the sun go down is one of my very favorite things.

4. Roasting marshmallows and eating them ranks at the top of my list of wonderful things!

5. Nothing sweeter than a baby smiling or laughing...especially mine!

6. I need to lose about 10 or so more pounds. I'm hoping to get into more of a routine when school starts to help make that happen.

7. I'm excited about our church's new building opening next month! Love our church.

8. I'm glad God created the earth with seasons. I find myself needing the change. Wish we had more of a fall and winter around these parts though.

9. I think before and after pictures are awesome! I'm an HGTV junkie...it's a good thing we don't have cable, or I'd probably watch it around the clock. I only get to watch it now when I go to friend's or family's homes that have it, or when we're on vacation. I know, it's sad.

10. Music is a must...all kinds (well almost all kinds) are good sometimes.


~~~

1. Life with Three Kids and a Husband

2. The 4 of Us

3. Life of the Hunt

4. Creatively Living

5. Chasing Butterflies

6. Taking a Deep Breath

7. Reinventing Dorsey

8. The Veronica Blog

9. Gavin's Voice

10. Betz Family Columbus



Sunday, August 9, 2009

I have not fallen off the face of the earth...yet!

I cannot believe it has been over a week since I last posted something about our beautiful life! There are seriously not enough hours in a day. So sorry! We were on vacation last week. My intention was to post while we were gone, but our beloved friends kept me going from the time we rose in the morning until way past time for bed. We had a fantastic time. Love hanging out with great friends! It's been crazy ever since we returned, still trying to get the house back in order from the new floors (love, love, love them!), taking Emma for an EEG (haven't heard anything yet), riding in the boat in the evening and hanging out with more wonderful people, and the list goes on. I'm so behind on emails that it will take me a whole day to sift through them. Oh well, it's been a good week.

We went to Great Wolf Lodge in Grapevine, Texas. (Grapevine is an absolutely adorable town, I might add. Great restaurants, great shopping, and oh, so cute!) Great Wolf Lodge was guh-rate fun for the kids. The place is kid-geared all the way, down to the spa for little girls, Scoops. Carleigh and Bailey loved their pedicure



The grown-up spa is wonderful too! My pedicure and massage was the best. After my massage was over I asked the lovely massage therapist who worked on me, Shannon if she did children or baby massage. She said she had before. I told her a little about Emma, and she got permission to give Ems a massage. I wasn't sure how she would like it. What do you think?




She LOVEDit! I was so glad she enjoyed something so much. We discovered she really likes the hot tub too!




I guess she realized we were on vacation, because she slept solid as a rock the whole time we were gone. It was good to know she was resting so well. Since we've returned, she and Cora both think it's a great idea to get up around 4 in the morning. We'll have to figure that one out fast.

We all had a truly splendid time on our vacation...









Have a great Sunday!
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