A Laughing Matter

Journal entry by Barbara Bradley — Apr 21, 2015

spontaneous

Pronunciation: /spɒnˈteɪnɪəs/

English:
adjective

1.Performed or occurring as a result of a sudden impulse or inclination and without premeditation

Not something I am very good at. I like to plan my day and know what’s ahead. I like lists, notes and dates on the calendar. I feel like I’m more in control. I am one of those people that carries a day planner. I like things to fit in a box. I’m one of those people.

Katie could care less about a box unless she can climb in it. God wants us to be happy creatures as we go through our day. That can be a difficult task for someone like me raising someone like Katie.

You would think after 7 years, a couple brain surgeries and dozens of tests and hospital stays, I would be better adjusted. Be flexible. Adapt in order to survive. Change in order to be happy.

Katie makes me sing to her in the grocery store and march in the rain. She dances in the isles during the Sunday sermon and shouts in the school hallways just to hear if her voice echoes. She locks herself in the bathroom when I want her to go and she opens the stall door on me when I’m trying to go. She does both while laughing at me.

Over the break I took the kids to the bank to open Nathan a savings account. While waiting she danced in circles singing Ring around the Rosie and pushed the water fountain 347 times. After finally getting her to sit down in the lobby she leaned over and rasberried my arm making a loud farting sound. The highlight was probably when I left the kids for 2 seconds to throw away thrash about ten feet away and Katie managed to drop her pants. She wants to be sure she makes a lasting impression I guess.

Her latest talent is removing her shirt. First off, I am very proud of her new skill. However, I see the potential of this becoming problematic. She took off her shirt yesterday about 5 times. I found her in her room topless wearing a beaded necklace. I thought I had a few more years before this would come up.

During church this past Sunday we had a more modern service with some freestyle rap music and Katie held her own revival. She danced, clapped and headed up to the stage with me running after. She hugged the band like a groupie. She will sit quietly for the most part during the service but when the music starts she gets moved by the spirit.

She is a beam of light. I must choose to break free from my plans and schedule. Break free from my box. Chose to walk in her joy.

We have been on the road all day. We just crossed the border into Baltimore. Tomorrow is our consult. I was able to figure out how to load her records onto a USB. I was actually impressed with myself 😉

Journal entry by Barbara Bradley — Apr 16, 2015

The Bradley family is proud to announce our new baby. Her name is Kit and she is a blue Honda Odyssey. She is three years old and is such a good baby. Kit has a few scars and bruises just like her momma but she is a beauty.

We said we never wanted a minivan and now we have two. Confused? Well, our 2002 accord that we loved was on the verge of issues. We had to decide the night before our dealership search which one to trade in. Sad but true. Which vehicle is worse off. Since we just put money into the old van we decided that may be a better option. We hope she lasts a few more years and then we will get another sedan for Billy to drive to work.

Technology has changed in the past 10 years. I should mention Billy and I do not have the latest and greatest in the world of technology. Kit has lots of options our old van doesn’t. She has a backup camera. Now I can actually see what I’m running over! My dad, rest his soul, would have loved that. He would have complained about how he didn’t need it but he would have really appreciated one on the back of his boat trailer when he went fishing.

Our new baby is so talented for a three year old. She is already talking! (That’s how she got her name. Kit from Nightrider!) It was out of nowhere. I went to use Siri on my iPhone to send Billy a text. (Using my phone to voice a text is about as technical as I get). As I began speaking, I heard a voice.

“God, is that you?”

“I’m not sure I understand. Would you like me to search the web?”

“Sweet Mary, I have a talking car, I think I might actually be batman!”

Kit repeats my message and then says, “Would you like me to send your text to Billy?”

Kit isn’t perfect. I don’t know about her life with her previous owner. She may have some emotional issues. She may need some therapy. Awwww, she is taking after her mother. This morning it was raining on the way to take the kids to school so I picked up one of Nathan’s school friends. After dropping the kids off I decided to have Kit send my text to offer to pick up after school because of the weather. Safety first.

Conversation with Kit:

“Tom, would you like me to pick up Davis from school this afternoon?”

“WAR.”….”Would you like me to send your message.”

“What? No! I didn’t say ‘war’. Cancel! CANCEL!”

“Would you like me to search ‘war’ on the web?”

“No, Kit! DO NOT!”

“Okie dokie, artichoke! I will cancel your message.” (Literally that is what she said.)

That crazy Kit. Such a sense of humor. I think Kit may have some anger issues and could possibly be a spy but she is such a dream. We will get her some therapy.

Speaking of therapy, there was a “psychiatric emergency” that delayed my therapy appointment this week. They kept apologizing at the desk when I checked out. My response was that I was just happy it wasn’t me. Boy, nothing but the sound of crickets. I guess that isn’t funny in their world. Kinda like joking about a bomb at the airport. Everyone relax.

Now for the latest on Katie, which is really why all of you are here. She has had a little tougher time the past couple days. She has done well at school and was ready to return after the break. That works out well for me because I was ready for her to return too.

The past couple days she has had more episodes and has vomited the past two nights before bed and had screaming out seizures the past two mornings upon waking. I went ahead and got a date on the calendar for the shunt surgery at Duke when we return from Maryland. I feel like this is most likely what everyone will decide. I feel better having this date on the calendar. Just hoping we get through the next couple weeks.

In closing, I haven’t left the vehicle in almost a week. There is really no point. She has everything I need and she keeps me company. She requires little from me. This time if you see me on the side of the road, don’t be concerned. I’m just hanging with Kit.

Journal entry by Barbara Bradley — Mar 25, 2015

Feeling scattered but determined. It’s sad when you feel like you can relate to the movie American Sniper. I have not served our country but I have been to war. My boots have been on the ground time and time again. It’s a war that never ends and no one wins. But we keep fighting. Fighting for our kids and our future.

We met with the neurosurgeon yesterday and decided to proceed with the “bolt” test. Usually the spinal tap is a reliable test but doesn’t always paint an accurate picture with kids like Katie. This Friday Billy will take her back to Duke and they will surgically insert a fiber optic wire into her brain and admit her over the weekend to check for changes in pressure. She could be having pressure increases that are causing issues on the right side. We can tell the ventricles are bigger and right side is being pushed over slightly. If the pressure isn’t normal, we will discuss putting in a shunt. It could be transient pressure issues that come and go where the body mostly absorbs the extra fluid but not always.  If this is the case, we may not want to insert a shunt because it has it’s own pros and cons. There are certainly risks to any procedure but we feel that this may at least confirm or eliminate this issue.

The other piece of this puzzle is determining if she could still have a connection. She really doesn’t have much tissue remaining on her left side. Unfortunately, a number of these kids need a complete anatomical removal of the entire diseased hemisphere because any residual tissue could cause seizures. We have asked for a longer MRI with DTI. Without getting too technical this will be a more detailed MRI than her recent one. Though not fail proof, this will help solve a piece of the puzzle. 

We are also looking to get an informal second opinion at Johns Hopkins. I was able to do this about 5 years ago when we began this journey. I just want another set of eyes to look over her records and scans and give us the reassurance we are on the right road. It’s a dusty road. I can’t see my hand in front of my face but I load my gun, take aim and keep moving towards the enemy. We are soldiers ready to fight and win this war. I am ready blow those S.O.B’s to smithereens. Boots on the ground.

If we weren’t having enough fun, our van is acting up. I will be taking it in tomorrow to replace some parts. I am still having good and bad days but starting to feel more like myself. It is hard to not feel like everything is piling on us. Billy has to remind me that these are all separate issues. When I met with the service tech at the auto shop, I was proud of myself for remaining calm and managing to be thankful. Thankful we are aware of issues that could cause major problems if we don’t tend to them. Thankful for the tax refund to pay for them. Thankful for not being stranded on the side of the road outside of Durham.

Journal entry by Barbara Bradley — Mar 10, 2015

I was hoping to report a clear plan of action today. The spinal tap we hoped would be scheduled for Monday happened this afternoon. Billy is waiting to speak to the neurologist and neurosurgeon but from the initial look the test did not show an increase in pressure. To further add to the puzzle, the screaming episodes showed on the EEG as seizures but not the dilated pupils, look of panic and vomiting. Again, I know enough to worry me. I know from other parent’s that seizure activity can come from deeper in the brain and not show on an EEG. Or perhaps it’s fluid related or something else entirely. All I know is that I am over it. I just wanted an answer today.

On a good note, she got the EEG leads off yesterday so at least she has been able to get out a bit and visit the play room. 

You will have to excuse me but I am in a mood. Quite frankly, aren’t I allowed?! It’s a little hard to stay positive when there doesn’t seem to be any positivie reinforcement for being so positively happy all the time. My afternoon got a bit of extra drama – which I always need. In an effort to be productive, I ran some errands but it was too soon to pick up Nathan and not worth going home. So, I parked at a local park close to Nathan’s school. It was a nice day so I rolled down the windows and read for a bit. I am supposed to be letting go of stress right? As luck would have it, when it was time to pick up Nathan from school the van wouldn’t start. Really? Thankfully a man had just pulled up and he had jumper cables and got me started. It was just the battery. Right after school we headed straight to the auto store and got a new battery. I know that is normal, life stress and happens to everyone but enough is enough already. Nathan said during dinner tonight, “Mommy, lots of stuff happens to us.” I don’t know how to respond to that anymore. I am going to be Kim Kardashian in my next life. My only concerns will be brushing my hair, taking selfies and correctly-placed busom in fabulous attire.

I have no idea what to plan for in the coming days…..and we know I like to have a plan. Don’t worry, I know I am supposed to know that life doesn’t work that way and let it go and blah, blah blah…..I got it. It’s been “not planned” for about 7 years now. Maybe I’ll get lucky and be eaten by a bear tomorrow or fall into a large sink hole. 

I know what you are thinking. Of course THOSE things wouldn’t happen. THAT would be ridiculous. Make it known that if you see me at the bottom of a large sink hole, PLEASE LEAVE ME THERE. I will be fine. I will just enjoy some peace before the buzzards come.

Journal entry by Barbara Bradley — Mar 8, 2015

Katie is still in the hospital and Billy is with her so he would be able to explain in more detail. The neurology team suspect the left side of her brain is not draining as it should. This is causing increased fluid and pressure that is impacting her right hemisphere and causing her latest seizures. A sedated, spinal tap will be scheduled for Monday – Most likely in the afternoon. If things show what they think it will, a shunt surgery will be scheduled. The shunt is put in place that will act as a drain. Of course this is put in very basic terms. I have always been so thankful she didn’t need a shunt yet here we are. But I know it’s better than major brain surgery again. There can certainly be issues with a shunt as I know all too well from other parents. I know just enough to worry myself but I have to stay focused and remain in the moment. I can’t live in “what if”. 

As expected, Katie has had a more difficult day….Billy too. Feeling bad isn’t fun but when you add being tethered to leads and an IV….the fun never ends. I am hoping once they get the spinal tap on the schedule maybe the EEG leads could be taken off but the more information they capture the better.

My focus has been Nathan this weekend. We went to a movie and he chose his dinner destination. Today he already had a birthday party on the calendar so that was a nice distraction. We have also let them talk on the phone. It’s the sweetest conversation to hear. “Hi, Bubby! I yuv you!”

Prayers they get to the bottom of things…quickly. I am ready for us all to be healthy and back under one roof.

On a positive note, Nathan and I both slept like the dead last night. It was awesome. 

Journal entry by Barbara Bradley — Mar 5, 2015

We all survived the day. This morning Katie was sedated for her an MRI and is now undergoing an EEG to capture the latest episodes. We will hopefully know more tomorrow. Usually I would be quietly typing while watching her sleep but I am home. I have to let go and this is my first step in doing that. I simply can not take everything on myself. I am well enough to know that I could not have handled this hospital stay. I mentally, emotionally and physically just can not do it. The questions. The interruptions. The decisions. The food. The beeping monitors. The whining. The entertaining. The cartoons. Billy has got this. The doctors have got this.

Have you ever played that game “I would rather….”. If you posed me with the question, “Would rather serve time in prison right now or stay overnight in the hospital?” My answer would be, “orange jumpsuit….size small”. To be fair, I am very thin now. If you dropped me off in the jungle, I would most likely be picked off by a large bird before my feet hit the ground. I would totally rather do my time in the slammer. I would just need a little prep time. I’ll just have to start doing push-ups and practicing my crazy-eye and boxing jabs in the mirror. I’ll get one of those barbwire tattoos on my bicep and change my name to Sledgehammer. A cot, a toilet and a book. I got this.

Small step by small step I am on the mend. I am still taking my on-line sleep therapy. It’s called Shuti. Isn’t that adorable? Not. This week has been focused on sleep deprivation. As they quote: “The key to getting more sleep is getting less.” How about Shut – up? Really?! I was expecting it to prescribe me a massage on the beach followed by a martini and novel of choice. The premise is tracking sleep efficiency not time in bed trying to sleep. It makes since, but it’s annoying. I shouldn’t need a course in sleep. 

Thankfully, I have been getting more sleep. Thank God. My biggest hurdle besides getting to sleep was waking too early. For weeks…months… I was up at the 4 am hour. The stress and anxiety around this is what started my insomnia. Katie began screaming in terror and I got into the habit of waking. Ironically, I finally start sleeping later, with the help of meds and therapy, and she screamed out a couple nights ago….at 4:30am. A haunting, bloodcurdling scream of terror. It could be the soundtrack to hell. 

Journal entry by Barbara Bradley — Jan 26, 2015

I have had many embarrassing moments in my life. I am certain this has to be in my top 3….What’s a bit of self-deprecating humor between friends?

Life has really thrown us a curve these past few months. I haven’t been in much of a mood to write an update. It’s exhausting to keep repeating the same thing over and over when it’s all just more of the same. After months of dealing with seizures and interrupted nights, you find your brain starts shutting down.  

I have been through countless sleepless nights, hundreds of appointments, a dozen or so stays at the hospital and two brain surgeries…yet, the past few months have really taken a toll on all of us. The holidays and getting a book published have not made things any easier.

After years of dealing with this the stress and anxiety have finally taken over. When Katie’s seizures returned in September they began with screaming episodes in the night every 30 minutes. A few nights of that nightmare and I began to not sleep. My nerves remained on alert. Fight or flight. I physically could not stay asleep. The brain can only handle so much. If you don’t sleep you will literally go crazy. When you stop sleeping, you stop dreaming. When you stop dreaming, you begin to lose hope.

After more than a month of not sleeping through the night, I finally went to the doctor and he gave me a little something to help me sleep and a little something to help my mental state. Just like each new seizure medicine for Katie, I remained positive this would be the help I needed. My doctor is wonderful but he is on the conservative side and gave me the smallest dose of each medication. Needless to say, when I still wasn’t sleeping things went down hill quickly. It’s a cycle: the more anxious you get, the less you sleep, the less you sleep the more anxious and overwhelmed you get. After returning home from Atlanta over Christmas break, I broke down over all the suitcases and presents scattered all over. Not exactly a normal response to a little clutter. I thought it best to go back to the doctor.  

I am better but have a long way to go. God is teaching me to keep the faith and let go. Every devotional I read lately relates. I can not control everything. I am in the edit phase. The revision process that will take time.

Katie is hanging in there I suppose. The topamax did not do the magic as we had hoped. I began to fear this before the holidays so she also started on a low dose of onfi at night. If the topamax didn’t work, we could build up the onfi.  

We are still tweaking meds. We are always tweaking meds. Unfortunately, she is still up early and has had a few episodes during the day this weekend with vomiting. It is very concerning. The first hour of sleep had improved so it’s frustrating to see things act up during the day. It feels like we are not going in the right direction. Her MRI is March 5th. I suppose those results will tell us next steps.

I emailed her doctor this weekend to update him and if she doesn’t improve soon he wants to have her admitted and see where things are really at now with seizure activity and get meds figured out. They can do more to calm things down inpatient than we can do from home. We are taking things one day at a time. The next few days will tell us a better story.

That’s enough bad news for one day. I was not intending to post this but after telling a few close friends, I was told I must. What the heck. I have posted just about everything else that happens to me and you all keep coming back for more so here goes. This is going to sound like a scene from a sitcom but I can assure you this really happened. I couldn’t make up the stuff that happens to me. I will tell you but you have to promise to still look me in the eyes the next time you see me. I am entertaining you at my expense but I much prefer to laugh than cry. 

I have good and bad days. Even on days I think I’m having a good day the anxiety sneaks up on me. I had my annual skin check at the dermatologist last week. Needless to say, it’s not an office I visit often. I show up my required 10 minutes early (I hate to be late for anything) only to find a notice posting the new location. Really? I got the automated reminder call 48 hour prior AND a phone call from the office staff….neither of which bothered to tell me that little detail. As soon as I saw the notice, I feel the anxiety coming on but kept myself in check. I looked up the address on my phone and told myself it was “ok”. The new office is only 5 minutes away. It’s ok. I am ok. I should mention that I am a bit directionally challenged. I have a love-hate relationship with my GPS which is an entirely different journal entry all together. The new office is now in a medical plaza area by the hospital among a number of buildings. They all look similar. I begin feeling a panic attack coming on as I am looking left and right and not seeing the building. It’s ok. I am ok. I just need to call them and tell them I am running late and ask then for a reference point so I know where I am going. It’s ok. I am ok.

For some reason I have never saved their number in my contacts so I end up looking them up from my phone and called the main hospital number….for ALL of the physicians and office affiliates. The operator asked me the name of the office but I couldn’t remember in my emotional state but she finally got me there. By this time I am really on the verge of tears but took some deep breaths and found my destination. I told myself “They can wait. How many hours of my life have been spent waiting on doctors? They can wait.” 

When I checked in at the front desk and calmly explained why I was late, all I really wanted was for the front desk girl to acknowledge that someone should have notified me but she didn’t. In fact, she didn’t even look up. As she took my credit card she asked if I got my reminder call. Yes, I did. I listened to enough to hear the date and time. Do you know how many automated reminder calls I get because of Katie? I bite my tongue and take the clipboard of paperwork, stifle my tears and barely sit down when the nurse is already calling my name. Really? When in the history of any doctor’s appointment have I been in the last 7 years has the doctor ever been on time? It’s ok. I am ok.  

I calmly apologize to the nurse explaining why I haven’t completed my paperwork. As she turns to lead me to a room, she asks if I got the automated reminder call. Yes. I couldn’t help myself. The old me and new me on the verge of a breakdown collide.”Who really listens to the whole thing?” I can’t help to reply. Still leading the way without so much as a glance in my direction she responds,”Well, it was at the end of the message. That’s the only way we have to notify people.” Seriously…in the age of text, email, phone calls….oh, I don’t know…a POSTCARD?!  I feel total panic and tears setting in but I’m also really pissed off at the same time which is only bringing on the tears more so. “But someone ACTUALLY called me. I spoke to a real person yesterday and she didn’t even bother to ask if I’ve been to the new office.” Her reply as she looked at her clipboard and closed the door, “Well, it’s fine. You are here now so let’s get started.” Again, no validation of my feelings and not even a hint of an apology.

The healthy me would have given her an earful about customer service at this point but I was not me. As she stared at the computer and started typing away, the tears start falling. I just lost it. Total breakdown. This woman was like a robot. I am sure she thought this was a very dramatic reaction to being late and couldn’t believe what a loon I was over this. I managed to get through the basic health questions but could not get it together. She was clearly not comfortable with me crying so she took the approach of restating it was ok that I was late but basically ignoring what was happening. She handed me a hospital gown and told me the doctor would be right in. What a sociopath. I’m not sure how I would have handled that but I’m pretty sure if would have started with putting down the medical chart and giving me a hug.

It’s ok. I am ok. Take your clothes off and get it together or they are going to call the psych ward. People dressed in white lab coats and those awful white shoes are going to come and drag you away in a van wearing a straight jacket if you don’t get yourself together. I tried deep breathing, counting, praying and but nothing was helping. As soon as the doctor walked in I start bawling. I was a toddler with no control over my emotions. When you are already on the verge and someone asks how you are doing it only acts as a catalyst. The only thing worse than ugly crying is ugly, naked, crazy-lady crying. Yup, I’m that lady right now. After a little consoling, I managed to calm down a bit but it was not a full recovery. It’s hard to feel empathy from a woman with Botox and lip injections. Imagine a duck giving you the “poor baby” look. At least she knows me already and she knows a little bit about Katie so she was at least more understanding than her nurse (who is still in the room ignoring me). I may be crazy but at least I’m not a Sociopath void of any empathy for others.

If you aren’t familiar with a skin check, the dermatologist uses a magnifying glass type thingy with a light and looks over your skin for suspicious moles or changes in the skin. They check everywhere. All your parts. She asked me to lay down on my belly first. I tried deep breathing again and pretended I was at the spa on a massage table but that wasn’t working. The faucet kept dripping and all I could do was cling to my cheap, wet, single ply tissue and pray it was over soon.

She then asked me to flip. I thought one side down. One to go. During the entire exam she talked about random things to help lighten the mood which I appreciated. Starting at my feet, she made her way up stopping to peek down my underwear. My only clinging article of dignity left. Right as she peers in she remarks, “What is this a 90’s thing?” 

Though shocked I wasn’t in a clear state of mind and my brain immediately flashed to my unshaven legs, chapped lips, rough cuticles and “other” grooming I was behind on. After a brief pause, I began my stammering reply that I have had a lot going on and perhaps I have let some things go lately. I realize she sees all kinds of things I can’t even imagine but is this yet another trend I have to keep up with?! Is there a blog about the latest grooming trends? Isn’t this a really rude thing to say to a 40-year-old woman on the verge of a nervous breakdown? How about her showing me what she’s got going on. I bet it’s pristine. As my brain continued rambling on, she simultaneously responded.”I think it must be Ace of Bass or some band like that from the 90’s.”

OH MY GOD! Oh…..my…..God! As my mind is hearing what she just said and she and the nurse are thinking about what I just said……We all realized what just happened. I thought she was making reference to my hedges in dire need of landscaping. But no. She was listening to the song playing over the intercom while she was checking my skin. No! This did not just happen. Where are those psych ward people to rush in and give an injection when you need them? Put me out of my misery already. PLEASE! 

NO ONE said a word after that except nurse lady telling me I could get dressed. I have never been more humiliated in my life. I actually paid to have this done. This moment has surpassed even my daughter dropping her diaper load in the lobby of Assurance United Methodist church two Easter Sundays ago. I really was feeling light headed at this point. After they left the room, I put my clothes on got the hell out of there. The walk of shame. They are probably still talking about me over one of their after-office Botox parties. I will never show my face….or anything else there for that matter ever again.

Moral of the story: Keep your underwear clean in case you get in a car wreck AND keep up the landscaping even if you are having a nervous breakdown. You’re welcome.