Wednesday, June 25, 2008

Mulder and Scully ~ The Smile Files



You know it's just about a month until "I Want To Believe" comes to the theater ~ I am brushing up on all things Mulder and Scully. I found this vid tonight ~ if you can block out the music in the background they have captured some funny moments. If you are an X-Files nut you will love it. Enjoy ~ also a vid of Mulder/Scully moments ~

Tuesday, June 24, 2008

Row of Ducks

Today DH & I took Skyler and Hannah to the doctor for a check-up so that I could get all of their medical papers for camp officially filled out and signed. Clearly they are both very healthy kids ~ they are rarely sick ~ I can't even remember the last time we went to the doctor for a sick visit. We are truly blessed to have such healthy kids. Anyway ~ my main reason for bringing them in was to bring their pediatrician up to speed on my health journey and inquire where to start with the kids.


A vision of a giant can of worms comes to mind ~ a huge tin can writhing with Jurassic worms! Seriously, am I ready to find out if my daughters also carry the mutated genes that create too much collagen, occult tethered cords and chiari malformations? Realistically, if we do find that they are going to need surgery, I at least want to get my brain decompression out of the way so that I will feel better and can focus on nursing them back to health. Deep breath ~ sigh ~

So while the unassuming pediatrician was filling out the paper work we had trucked in to the office I gave her a subtle warning ~ I told her I had some questions ~ she said she would love to multi-task but wanted to finish filling out the paper work first. I told her I had a 'Double Jeopardy' question ~ she later told me I should have called it 'triple whammy jeopardy'!
After all the paper work was completed, I started the conversation with, "Are you familiar with a brain malformation called Chiari? A collagen mutation called Ehlers Danlos? A spinal deformation called 'Occult Tethered Cord'? You could see the immediate concern on the doctor's face. I tried to sum up my health abnormalities in 3 minutes ~ then voiced my concerns that my daughters might also have the same conditions. After much dialog back and forth ~ we decided to go ahead and start with my youngest, Skyler. She's got a couple of external markers indicating TC and of course with the uber bendiness of her joints she oozes with EDS already ~ So I guess you could say that I am getting my ducks in a row.

Our pediatrician remarked about the calmness we all possessed while talking about spinal and brain malformations ~ heavy topics ~ HUGE ~ but you know what? I have had a long time to sit with the information ~ mulled it over in my brain many times. I guess you could say that we are all a little callused. I have done my homework. I know what is at stake ~ if left untreated, my kids will probably be facing brain surgery some time down the line. If there is anything in my power to prevent this from happeneing ~ I will do it. But seriously ~ how crazy is all of this?! My youngest child is healthy ~ no complaints ~ active, energetic, creative, loving ~ nothing is shouting 'occult tethered cord'~ but I have an intuition that something is not right.
I was so relieved when our pediatrician sat and listened to our story without missing a beat ~ no rolling of the eyes, no deep heavy sighs, no interrupting me in mid-sentence. We are blessed to have a doctor who is genuine and caring. She agrees with me and supports getting Skyler checked out first ~ see what we find and go from there. You know how I have talked many times about perspective ~ how God sees the whole picture and we see just a tiny view of what is happening. Well this afternoon my perspective came into focus just a little bit more. Maybe the reason why I am going through all of these Chiari pains is to prevent my children from suffering. Seriously ~ I am still amazed that one little MRI turned my world upside down and brought instant clarity at the same time.


Maybe there is something wrong with me, but this progression of events seems as it should be. I'm not freaking out about the possibility of going through all of this with my kids ~ All is happening for a reason ~ reasons I can't possibly fathom. But through it all I hear the sound of God's gentle and powerful voice (I hear Him as James Earl Jones sometimes in my head ~ think Mufassa from Lion King) telling me that He will not leave me or forsake me. There is nothing too big for Him to handle and I trust in the truth of that statement. Oi! It's been a while since I have done some heavy blogging ~ but there it is ~ more developments to follow ~

Sunday, June 22, 2008

Buttermilk and Strawberries

What a busy weekend. On Saturday we headed north into the Adirondack Mountains (ADK) for a day hike with Hannah's girl scout troop. The weather forecast called for sunny skies, but the minute we started hiking the heavens opened and the rain started pouring down! Despite the rain everyone had a great time ~ we even saw some red salamanders and stood at the base of Buttermilk Falls! After church today we headed out to pick several quarts of strawberries.

Ever since I was a little girl I have been fascinated with the summer Olympics in particular. I absolutely love watching the gymnastics events and follow them pretty closely. This weekend were the Olympic trials for both the men and women gymnasts. The men's team has been announced ~ Joe Hagerty, Morgan Hamm, Paul Hamm, Jonathan Horton, Justin Spring & Kevin Tan. The two top women gymnasts: Shawn Johnson and Nastia Liukin are already on the team and now 12 Olympic hopefuls will find out if they have made the team after the training camp in mid July.

After watching hours of gymnastic this weekend I am super excited to see them represent the USA at the Olympics starting on 8-8-08. The gymnasts are have mad gymnastic skills and I feel like we have what it takes to take the gold! Looking forward to a more pain free week this week. Enough of the low pressure headaches ~ they are making me lose my personality.

Friday, June 20, 2008

Hello Again To A Not So Welcomed Aquaintance

School is almost out ~ the pool is finally open and ready for hours of enjoyment ~ I am thankful for these things and so much more! But in the midst of the worldwide, turbulent climate changes, the brain tail has been a real pain in the neck lately. I am feeling lots of Chiari pressure headaches and this week my lovely friend, VERTIGO, decided to camp out and spin me around for several days. Wow ~ I so didn't miss those days of constant spinning.

I recently found the picture posted at the right ~ it's a good illustration of a herniated cerebellum. The herniation in this picture is pretty similar to mine ~ even the length of the chiari herniation touching the top of the C2 is right for me, too. I continue to pray for patience ~ pray for guidance and clarity on how to proceed. I got the green light from the insurance company regarding the brain surgery. All I have to do is call them when I am ready and they will type out another authorization letter for me. Whew ~ what a relief to know that I won't have to battle the red tape again.

I finally broke down and took some pain killers for my head today ~ the pain is almost at the 'morphine worthy' pain level. Reminds me of the story about Zeus and his uber headache that ended with the birth of Athena ~
In time Zeus developed a "splitting" headache and shortly thereafter the
great goddess Athena was born from his head. The god of the forge and smiths,
Hephaestus, seeing the discomfort that his King Zeus was in, took an axe and
sliced open the head of Zeus, relieving his pain and bringing forth Athena.

Athena was dressed in a robe that Metis had created while trapped inside Zeus, and the goddess of Wisdom was carrying a splendid shield and spear (No wonder Zeus had a headache!) She came into being shouting a war cry that was heard on heaven and earth.
But seriously ~ enough with the uber low pressure fronts and thunderstorms. Bring on the sunny, breezy summer weather ~ please! I am headed up in the Adirondacks tomorrow as a chaperons for my eldest daughter's hike with her Girl Scout troop. I hope that all of this wet weather hasn't turned the trails into a mud slide. We might go strawberry picking on Sunday ~ looking forward to a rejuvenating weekend. True Story ~

Tuesday, June 17, 2008

Profound Loss

I think I am still is shock over the sudden loss of Tim Russert. The picture above is a picture of his son, Luke, visiting the MEET THE PRESS studio after his death. There is a wonderful video that celebrates Tim Russert's life ~ click on this link for a good article and video.

Tim ~ you be greatly missed! http://www.msnbc.msn.com/id/25186698/

Sunday, June 15, 2008

Say

I recently saw the movie ~ The Bucket List. John Mayer wrote a song for the movie, SAY. The song is catchy, but the lyrics have stuck with me ~ playing over and over in my mind. With the arrival of summertime and the unstable weather that has descended upon NY, the return of my headaches is a constant reminder that life is short and not a minute should be wasted.
I often find my mind wandering back in time ~ thinking about roads I wish I would have gone down ~ made different choices ~ wish I had taken more chances and said what was on my heart. I know that there are books ~ volumes of books stored up in my mind of things I wish I had said and didn't. But now ~ since the birth of this blog and the connections with people I have made through my ramblings here ~ I find myself sharing more and more of myself ~ speaking from my heart. I can't help it ~ life is too short not to connect on a heart level.

So, with that said, I encourage you to say what you need to say ~ heal broken relationships ~ muster up the courage and let your heart speak for you.


SAY ~ John Mayer


Take out of your wasted honor
Every little past frustration
Take all of your so called problems
Better put them in quotations
Say what you need to say (8x)
Walking like a one man army
Fighting with the shadows in your head
Living out the same old moment
Knowing you'd be better off instead
If you could only Say what you need to say (8x)
Have no fear for giving in
Have no fear for giving over
You better know that in the end its better to say too much
Than to never to say what you need to say again
Even if your hands are shaking
And your faith is broken
Even as the eyes are closing
Do it with a heart wide open Why?
Say what you need to say (25x)

Sunday, June 8, 2008

Paradox Lake

The photo above is a view from the campsite from the camping trip this past weekend. There's nothing like spending a couple of nights in the mountains to soothe the soul. Even with the threat of isolated thunder storms in the area the weather was sunny and hot. We even had the chance to go on a hike and dip our toes in the lake.

I had high hopes of hearing some more owl serenades and was thrilled to hear two different owl calls. First I heard an Eastern Screech-Owl. You could easily mistake their call for the whinny of a tiny pony. Saturday night there was a brief Barred Owl serenade ~ their calls sound like "who cooks? who cooks for you?"

The weekend went by so fast, but I feel relaxed and rested. The campground was pretty much empty so we had the freedom to laugh and talk until the Jurassic moths were threatening to take over our campsite. Yin Metal Rooster, Yin Wood Rooster, Yin Metal Snake ~ thanks for the memories and I am looking forward to the next camping adventure. Yang Fire Tiger ~ Out

PS. Next time you play Cranium and you get this question ~ What State flies this flag? Remember that the answer is MARYLAND!!! Also ~ 'flammable' and 'inflammable' mean the exact same thing ~~~

Tuesday, June 3, 2008

No Pain No Gain

So the Dear Husband (DH) decided to buy this mail order workout program called BeachBody ~ so that together we can whittle down some of those winter inches. The program is pretty similar to Body for Life ~ but the beach body program wants you to use their workout DVD six times a week. Sounds pretty easy ~ right? I have great adolescent pride about all the hours that I spent slaving away at Jane Fonda workout tapes in the 80's and 90's. I could keep up with their every move and do the entire 'advanced' workouts down to the very last sit up.

Fast forward a couple of decades ~ the workout brings a whole lot of PAIN followed by an extra serving of more PAIN! At first ~ I'll admit it ~ I scoffed and chortled at the intro workout. The moves were slow and elementary according to my standards. Then ~ without any warning ~ they break into several minutes of lunges. This goes on for about TEN MINUTES ~ followed by FIVE minutes of squats and abdominal crunches. Being the stubborn person I am, I proceeded to torture my body a bit more by viewing the 'advanced' workout. Proving that I wasn't going to let this beachbody DVD break me. I fast forwarded past the elementary moves, lunges and squats. I did the elastic band arm workout and did the leg /glute lift exercises from hell. Needless to say ~ I am SORE all over today and the thought of having to tie on my sneakers in a couple of hours and do it all again is agonizing.
Eye on the prize ~ the program is only for about SIX weeks. If I go through all this torture and don't have a Beach Body by then I want my money back!

Sunday, June 1, 2008

The Call

Ever since I saw Prince Caspian this song ~ The Call ~ has been playing in my mind ~ so wistful ~ hopeful ~

The Call ~ by Regina Spektor

It started out as a feeling

Which then grew into a hope
Which then turned into a quiet thought
Which then turned into a quiet word
And then that word grew louder and louder
Til it was a battle cry
I'll come back
When you call me
No need to say goodbye
Just because everything's changing
Doesn't mean it's never been this way before
All you can do is try to know who your friends are
As you head off to the war
Pick a star on the dark horizon
And follow the light
You'll come back when it's over
No need to say goodbye
You'll come back when it's over
No need to say goodbye
Now we're back to the beginning
It's just a feeling and no one knows yet
But just because they can't feel it too
t mean that you have to forget
Let your memories grow stronger and stronger
'Til they're before your eyes
You'll come back
When they call you
No need to say goodbye
You'll come back
When they call you
No need to say goodbye