Journal entry by Barbara Bradley — May 6, 2015

The seizures are creeping back in. She has mostly been having the look of panic and pupil dilation sometimes followed with a gag and/or a yawn, but we hadn’t heard any screaming seizures since our trip to Baltimore a couple weeks ago. Well, until last night. I suppose we always know it’s coming when she vomits her medicines. It happened right before bed (after giving the meds almost 2 hours before). If she throws up her meds within 30 minutes we re-give them but not after they have been in her system for a couple hours because you can’t be sure how much medication has absorbed.

I heard back yesterday from Duke. Again, I suppose we already knew what was coming. After getting more information from Johns Hopkins, they are putting the option of a complete anatomical surgery on the table but prefer to just insert a shunt at this time. Again, they are more on the conservative side which I appreciate but let’s solve the core problem instead of a band aide. Her pressure only goes up when she is having the screaming seizures. If we can gain better control or hopefully eliminate the seizures then the pressure wouldn’t go up in the first place.

Ultimately we know the decision is on us as her parents. I have gone ahead and asked them to get the ball rolling to secure a spot on the schedule for the procedure because this will take more staff and longer time-frame to coordinate. I don’t have any details yet. I assume we will have to follow-up directly with the surgeon again to discuss.

Go big or go home. I don’t think we should cower down to our fears at this point. The events leading us to here were no mistake. When I spoke with the clinical coordinator for the neurologist at Johns Hopkins and they agreed immediately to see her so quickly, that wasn’t just chance. It wasn’t just chance that he spelled out what our gut had been telling us from the return of these latest seizures. That said, this decision weighs heavily on our hearts and minds.

I am working on balancing and managing life. Lots of moving parts. I know somewhere in all the many parts it is important to take time out for me. I have tried many things but thought I would give meditation a go. Be still and listen. That’s when we find our path. Right? or something like that…

The idea of meditation is different for everyone depending on their beliefs, but at the core it is a clearing of the mind. 

However, in reality, my mind is never really clear. My mind is a constant steam of thoughts like a remote control channel surfing; bombarded with tasks, ideas and useless fears and worries.

It starts in a good place. Lately I try to arrive at Katie’s school about half an hour before dismissal in hopes of finding a calm moment tucked away in a small space without the tasks of chores tugging at me. I begin with soft music and breathing and even visual images behind closed eyes. Again, it starts in a good place.

Breathe in…breathe out…I can totally do this…(someone parks next to me)…just breathe..I should just take a peak. I might know them and if I don’t look that would be rude….I could just look and wave…it is the least a decent person could do…uuugh….keep your eyes closed and listen to your breathing…inhale…exhale….inhale…exhale….I am totally meditating right now. I am really doing it….I bet my third eye is even winking at me….stop it!…can’t you just sit and be still for 5 minutes?….is that so hard?….I just have to open my eyes a little and see who is parked next to me. I knew it! It’s that woman. The one that got a handicap hang tag circa 1970 that likes to steal the parking spots from disabled children trying to go to school and get an education. Making my poor baby walk across the parking lot carrying her 25 pound backpack in her tiny heart covered leg orthotics. A riot would happen if I did that to you but no worries lady. That woman!

Ha! Who got here first today?! It’s ’bout to get cray cray up in this swag wagon. Huh…that’s what I’m talkin’ bout. There’s a new van in town, sista. I got some Blues Clues playin’ on the DVD and some easy listening crooning through the speakers (at a reasonable decibel for safe commuting, of course). Riding low and smooth with 47 cup holders, some goldfish crackers, push-button lift gate….and Bluetooth. Talking minivan. Bet she don’t meditate. That’s right. Word to your mother. Ok, calm down, Vanilla Ice. I think my inner voice just flashed a gang sign. Who knew I did some time in the slammer and apparently joined a gang.

Wait..that’s not of even her. I know her! (Rolling down window and waving enthusiastically) “Hey, Jenny!!! How’s it goin’ girl? How’s your momma doin’? …..That’s good. I’m just in here meditatin’. I gotta go get back to bein’ still. Talk at ‘cha later! Byyyye!’

Geez….where was I…this is stressful. I need one of my nerve pills….

Where was I….oh yes, meditating..meditating like a Boss…..focus…ok, try counting your breaths….that’s what it said in that yoga article I was reading…I think…the phone rang and it was one of those automated reminder calls from the dentist so I technically didn’t finish it but the chic on the front cover had a really cute outfit..I don’t know how she did that thing with her leg but…..wait…when is that appointment?….I should just peak at my planner….really..my eyes would only be open for a second…I could keep breathing and everything..I can’t have peace until I at least check…what if its today?….

COME ON!! STOP IT!….Maybe if I just change my music to white noise. That’s is it….bubbling brook….that is nice…..inhale…count….hold…4,5…exhale…..3,4….I am a total rockstar..if there is an award to win for best meditator I would definitely get it.. I am sitting on a mountain with Ghandi himself….we are sooooo meditating right now……look at him…. listen to that stream…dang it…I kinda need to pee now….stupid trickling waterfall…..I bet Ghandi doesn’t have to pee…bet he peed before he hiked the mountain….bet he checked his calendar too..fed a homeless child…..uuugghh…inhale…exhale…inhale…good grief this is like the longest 3 minutes ever! I am so not doing this right and now I have officially wasted 3 minutes……I can really do a lot in 3 minutes….I could have put a load of laundry in the wash, confirmed that dental appointment….peed before I left the house…speaking of…why did I chose this underwear….oh…cuz of the yoga pants….yoga slash meditation pants….I am dressed for this moment….a professional meditator……stop it. (Ghandi just tapped me on the shoulder and asked me to leave if I don’t stop thinking and fidgeting)..I know! the nerve… this waterfall is open to anyone…it is a free country…. I suppose he is right..I should be still….ouch!…I think I pulled my chakra….

Just listen to the water…it is lovely and peaceful….there…inhale….exhale….inhale….exhale…I did it. I totally meditated…..I am so doing this again tomorrow…well, unless I am taking the kids to the dentist…in that case…the day after…Man, I am like a new woman. Plus, I’m starting to sweat and I think I’m sitting on a rock. “Psssst! Wake up Ghandi, let’s blow this mountain top, find a taco stand and get pedicures. Your feet are awful. My treat.”

Reminded of a dear friend’s daughter. Kids know how to keep it real. Her mother asked her if she wanted to do some yoga together so they could relax and find inner-peace. Minutes in the daughter said, “Can’t we just skip to the inner-peace part?”

That’s the modern world in a nut shell. Instant gratitude. Give me what I want and give to me now and don’t make me work for it.

I don’t know a lot and still struggle every day to do this myself but all I know is have a plan and strive for a goal, but don’t forget to be present or you miss the view along the way.