10,000 Miles

What is it about this song that is so mournful and bittersweet ~ this melody expresses my mood today as I remember my brother, Trey's, birthday. Sneaks up on me every year. You know, I don't actually even recall one memory of one of Trey's birthdays ~ but I do vividly remember the way it felt when he wrapped his arms around me and hugged me like he was never going to let go. So many years have passed since his passing and yet it still feels like he's just gone for a while ~ I know we will be together again, one day.

United As One Team ~ Reaching For Our Dream!

What whirlwind of a weekend! Friday night we took the girls out of school around noon and headed down to New Jersey for the Eastern Regional Cheerleading competition. We were all decked out in our silver, blue and white ~ cow bells and banners in tow. Hannah's Jr Pee Wee Large team did awesome ~ we are so very proud of her and her team for going out there and giving it their all! Out of 15 teams, we placed 4th ~ we missed our Disney invitation by two places. There were lots of tears shed ~ the girls really had their hearts set on Disney, but I know that we will get there next year!

On the way home we stopped in a quaint little New Jersey town and had a late lunch with a friend from high school. It's been so fun reconnecting with long lost friends ~ you know, life is just too short not to! When we headed back home we drove right through a band of heavy rain and tornado warnings. My head was feeling like it was going to explode by then and I just couldn't wait to get home and get in bed! Today we are staying around the house to relax. Did I mention that there is snow in the forecast for the next couple of days? Seriously, just yesterday it was a balmy 73 degrees!

The Bison ~ Are Back ~ And Ready To Compete

It's that time of year ~ again. Hannah's cheer squad is competing in the Eastern Regional competition on Saturday morning. The team has improved 500% from last year and have really kicked it up a notch in their routine. I am so very proud of Hannah! She has worked really hard to perfect her cheers and routine and it really shows! Her team will be competing against 14 other squads ~ reaching for a team invitation to the national competition at Walt Disney World in a couple of weeks. They will only take two teams to move on to the final competition.

Did I mention that WHEN they go to Disney and compete ~ December 8th ~ there's a huge chance that I will still be in the hospital recovering! What are the odds? Well last time I was connected to a morphine pump the GIANTS won the Super Bowl! Wish us luck ~ it's going to be a big day ~ I can feel it! GO BISON!

New Discoveries Awaken the Muse

There's nothing like the shock and awe factor to awaken the Muse from her slumber. ~Sigh~ Thanks for all the happy birthday wishes ~ they really made my day. The picture above was the only thing I could think about today. The shock has worn off ~ WARNING ~ if you put your daughter into an MRI machine to capture pictures of her brain, prepare yourself for what might be revealed.

That's Skyler's brain ~ recognize the all too familiar brain tail in there? Hers is minimal ~ 5-6mm herniation. Actually, we haven't even received the official phone call from the doctor yet. I was finally able to open the MRI disk that the hospital gave to me. I immediately e-mailed my pediatrician to see if she had heard anything from the neurosurgeon yet and she confirmed my suspicions.

More later ~ I just wanted to let you all know what's going on on my lil speck on this planet. I keep reminding myself that God doesn't give us more than we can handle. More will be revealed. I just thank God that I know what Chiari is and will make it my mission in life to prevent Skyler from having any kind of brain surgery.

Endless Thundering Motion

What is it about the endless thundering motion of the ocean that seems to wash all my cares and worries away? As soon as I can hear the sound of the surf, they become a vapor, a distant memory almost instantly. How can a force of nature have such healing powers over me?

Each summer, we make the pilgrimage to Cape Cod ~ usually we rent a house with family and friends and stay for a week. This year we are doing a quick weekend trip and we are going to experiment with roughing it, tent camping style. We plan on keeping it simple ~ tent, sleeping bags, bathing suits and don't forget the boogie boards.

I remember this time last year, walking along the beach, gathering a collection of rocks that resembled brain tails ~ thinking, this time next year, just possibly, I might be done with the whole brain surgery thing. Time seems to have a mind of it's own. Lately, my watch is literally speeding up with each day. I just reset my watch a month ago and it's already verging on being 20 minutes fast. I see the irony ~ time is speeding up ~ even though December seems a long way out there, time is flying by ~ seriously moving...

So ~ I am really looking forward to vacationing with the family this Labor Day weekend ~ praying that I am as pain and vertigo free as possible. Hoping for renewed strength and insight ~ cast my worries to the wind and let the ocean do it's job ~ restore strength and hope.

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 ~

The Great Outdoors

This past weekend we all went on a hike in Woodstock, NY ~ in the Catskills Mountains. When I picked our hike location I knew it would be a bit of a challenge for the girls (5 miles round trip), but there's no time like the present to get them accustomed to longer, more challenging hikes. We chose to hike Overlook Mountain ~ one of the big perks of the hike is that about halfway up the mountain you will encounter the Mountain House ruins.

The Mountain House opened in 1871 and could accommodate about 300 guests back in the day. The hotel ruins are located at 2,920' ~ here's a link of photos someone has snapped on a foggy day up on the mountain. Apparently the hotel burned down twice ~ rebuilt ~ then fell prey to the stock market crash. in the 1920's.

We couldn't have picked a more perfect day for a walk in the woods. The temps were in the mid 60's with sun peaking out from behind the clouds now and again. We all made it to the summit and enjoyed some amazing views ~ and a yummy lunch. After we were refueled, Skyler proceeded to skip down the mountain with her walking stick ~ leading us the whole way down to the trail head.

I know ~ some of you are probably rolling your eyes and yelling at me for going on a 5 mile hike not even four months after my detethering ~ but truthfully ~ the adrenaline is the best drug out there. I have been plagued with headaches and neck pain for a couple of weeks straight now ~ it's really breaking me down again. But ~ that said~ my focus in on getting stronger ~ living stronger. The sermon in church yesterday was speaking directly to me ~ again ~ wait on God and his direction for your life ~ oi! Why is that so hard to do?

The Captain

Last week we adopted a 6 month old kitten ~ this is my crack pot idea of a diet and exercise plan for our over weight Miss Kitten Britches (AKA Bellikins). The kitten was already named 'Kirk' for the famous Captain Kirk from Star Trek. He has a very bold personality and is always exploring wherever his kitten paws take him. We have decided to call him 'Captain', because it is more fitting than 'Kirk'. Also ~ Kirk is such a cuddly lil guy and he follows me around like a puppy dog when he's not engaged in a game of chase with Bellikins. I will post a picture of him soon.

Bellikins did not receive our new family member with open arms ~ she hissed, growled and snarled for about two days. He was so confused and couldn't understand why she didn't like him. Well, now, they are best buddies and are tearing around the house right now. Ahhhh ~ my exercise plan for Bellikins is coming to life ~ she's doing a lot of running around. But ~ here's the catch 22 ~ she's eating Captain's kitten food and he's eating her diet adult food!