When the Perfectionist Fails

Is there a time when I get to be “perfect” again?

I am a true perfectionist… even about the silliest stuff.

Even with school – yes… I believe there is such thing as the “perfect” lesson. And – in my version of “perfect” – you work hard… then harder…. then even harder – until things are the best they will ever get.  That no one could have worked harder than you me.  No one could have made it better than you me.  Perfection.

I really wanted to write something light and fluffy.  Fun pictures of the kids and Ray and I at the parade.  We were going to bake chocolate chip cookies tonight.  We had it all planned out.  Relax.  Breathe.  Exhale.  Smile.

Last week Alexander had an evening of screaming all night long.  I went to work on 2 hours of sleep.  The next day, I had him into the doctors – to recheck his ears.  Because we were that on top of things.  We were preemptive.  We did everything right.  Turns out – he did still have an ear infection.  Turns out… he did need more antibiotics.  *Cue back patting here.  Great Job Kristen…. Way to go – figure it out. Fix it.  Don’t let things get out of control. *

Today Alexander had another seizure.  Despite all of it.  Despite the doctor visit.  Despite the early detection of the ear infection.  What about the “perfection” of it all?  I worked harder than anyone.  We did everything right.

Alexander’s seizure was the biggest yet.  Lasting the longest.  The most uncontrolled ever.
15 mg of Valium
100 mg IV Keppra
100 mg IV phosphenotoine
3 doses (don’t know the MG rate here) of some other “V” medicine
3 doses of Ativan. 
I believe there are some other drugs that I missed. 
I was too busy trying to overhear the conversations:
Phenobarbital / Valpuric Acid / Intubate / PICU / Spinal Tap / Meningitis …. shit.

I know you are all going to say that no one is perfect.  I know you are going to tell me to stop beating myself up about this.  But.  I. Am. His. Mom.  (As of right now… he is not intubated nor has he had a spinal tap…yet.)

How can I recognize and help so many other people… but not be perfect enough for my little buddy? 
(who… by the way … is PERFECT.)  I just feel like I’ve screwed it up somehow again.  No cookies for the twins.  So many drugs given to this little boy… and – nothing I could do to stop it.  This little fighter boy. 

Ugh. Tomorrow… I promise to blog a happy blog. Today, I need to sleep somehow.  And sleep will come after I’ve emptied my heart of this blurred vision of perfection.  Thanks for listening.

For those of you who have been following… I wonder what you think.

 What do you think when you put snippets of our life together?  I’ve been wondering this … because – I use my home Facebook page to keep people updated on our life.  The blog is more of an outlet, so sometimes I forget to update it when we are home or doing things.  I try not to exploit … but yet sometimes to explain.


I’ve also been thinking about other things… to do with the blog – but more on that next week.  For now, I would like to really tell you about the last few days.  In sequence, not by these random snippets as my emotions brim until they spill over the edge and onto the page.


Alexander had a seizure. Hmmmm… how many posts have started this way?





Anyway… Have you ever had one of those “perfect” days?  In class, I was completely fulfilled.  It was a day where my students and I connected.  Where I could see them excited to learn … and they didn’t even realize how many cool things they were learning.  And AMAZING teaching day.






Then I came home and ran my THIRD run!  WooHoo!  I actually remember enjoying the run.  I daydreamed.  I mentally blogged about the ideas that floated around in my head.  Step. Work Harder. Step. Give More than we Take. Step. Love my Family. Step. Enjoy the Quiet. Step. Embrace the Noise. Step. Slow Down. Step. Baby Boy. Step. Respect my Husband. Step. Kiss my kids… and on and on.

With each pounding of the pavement I could feel the stress release from my shoulders as I pushed aside the needs of everyone else and enjoyed the desires of my heart.


When I finally made it back for dinner, it was to smiling kids as we planned for our evening’s adventures.  My Grandma turned 83 and we were headed to an impromptu cake and ice cream party.  The kids were so excited.  I was excited too because Ray said I should get some real shoes before I gave myself shin splints.  Seriously… the shoe situation was pretty bad.




I ran into the shoe store.  Quick and simple.  … Quick and simple.  It should have been quick and simple.  Honestly – it is when everyone has their guard down that things seem to go awry. 

I came out and I could tell something was wrong.  Ray had Alexander out of his car seat.  When I looked in I could see.  Questions on the twins face.  Fake smiles on Ray’s lips.  He said, “I think he’s having a seizure. But it doesn’t look right.”  He was right.  Instead of the normal seizure – this one was only on Alexander’s left side.  His right side was completely responsive and alert.  We weren’t able to do anything in a parking lot – so we administered relief Diastat and loaded up to try to get to the house as fast as possible.  I sat timing Alexander’s seizure while we rode.  I called the Neurologist and we discussed our options once we got home.  Alexander’s seizure did break for a few minutes – but a new problem immerged.  He didn’t seem to have use of his left side.  His arm hung limp and his leg was in an odd position.  Everyone was thinking the same thing… stroke.

What a horrible thing to happen to someone so small.  We are making such progress! A stroke would just place more obstacles… not take them away. 

The ambulance was en-route – as was the helicopter – to take some of us to Hershey.  When the helicopter arrived we were greeted by 2 people.  One…inspired THIS POST about his behavior.    It was the closest I’ve ever been to calling someone “out” on the internet.  I was so angry as I drove to Hershey… so worried.  About my baby.

A CAT scan showed no stroke occurred.  Blood work was drawn.  Because Alexander has small veins, an arterial stick was used.  Not only is it incredibly dangerous, but it is also incredibly painful.  Alexander screamed as they drew this blood. 



Finally, with his seizures seemingly broken, we were admitted for observation because this last one was so different.  I once again – I convinced the doctors to allow me to watch him all night in order for us to have a private room.  Facebook became my friend.  My blog became my outlet.  The minute I released my anger over that insensitive EMT… my heart was open for the prayers that were offered up. 

I then posted the 3am reflection.  The smile of peace on a night changed in the blink of an eye.  Because isn’t life just a series of turns?  That happen in the blink of an eye? 

This morning, life returned to normal.  We were given an increase in medicine and discharge orders. 

So now what?   What do you do when you return home?  Your emotions so raw from the night’s activities and lack of sleep…

I called the EMT service.  I filed a formal complaint.  I told the director that it was irresponsible for that EMT to leave with my child and not all his medical history.  For my child to be unaccompanied for almost 2 hours without medical instructions.  I told the director that it was immoral for that EMT to take my child without even a hug or kiss goodbye.  Nothing. 

As I made this call… there was another realization that sat in just as deep.  That EMT may once again be in charge of my son’s life.  Am I making a mistake? 


I must push those fears aside for what is RIGHT.  I must help us return to normal. 
Twins and I play outside.
I try on my running shoes.
I Love my children.  All of them. 

So…. last night, when I returned home – I made the choice to continue with our IPad competition.  And trust me… competition is fierce.   I wondered if it was too much … to ask for prayers and then ask for votes.  And, I decided that we would either: say we were returning to life as normal and then do it… or we wouldn’t. 

I choose to do it.  However…. we have been very blessed by your prayers – which were necessary – those are what are important.  Above all else – the value of those relationships.  I wrote about that HERE.  I am writing this here in case you were following on Facebook or somewhere else and wonder, “how do they just go back? and pick up life like nothing happened?"  Because we have to.


We are still competing for the IPad.  - If you feel like voting for Alexander… he’s at the bottom… the cowboy. If you want to vote for another kid – that is cool too:  All the kids would benefit. We are personal friends with the Little Engine that Could and Super Girl.  We are internet friends with all of them.  And… the prisoner has been locked up for 24 years.  VOTE HERE


If you feel like sharing the link – share away. 
Down’s Syndrome is 1:600.  Alexander’s Syndrome is 1:50,000.  Spreading a little awareness goes a long way.



And now… I can feel relief.  We’ve helped raise awareness for Alexander’s syndrome, thanked everyone for their prayers and support, and explained all those “snippets” of life through my blog outlet. 



Thanks Shell.  You always deliver. 

3 am

You know who is beautiful at 3am? My baby boy.

I watch him… as I promised.  To get us this room. 

He sighs. His chest rises and falls. His eyes are just cracked a bit.  His downturned mouth… is slightly up.

I love that boy.  That miracle baby.  A few hours ago they went for the femoral artery to get blood.  They had to do it twice.  And when I walked back in the room… he let me soothe his tears.  I was too weak to stay in the room with him – my fighter baby – but he still let me comfort him.

I would move mountains for that kid.  To see him BE.  Just … BE.  No more seizures. No more arterial sticks.

Earlier today, I just had to get the anger out.  If this blog is my outlet, then I have to be able to be angry every once in awhile.  It was anger that stems from Mommy Fear.  Fear for my son.  My baby who cannot speak for himself.

I said I wasn’t going to do this, but my heart has mended.  My baby hero has once again shown me the way.

I am thankful for LIFE.  His life, Andrew’s life, Addison’s life, Ray’s life….. My parent’s life (including in-laws – because they are my parents just as much)… those who love us…. LIFE

Speaking of LOVE… I am thankful for it.  Today my friends and family lifted us up in prayer.  My friend, who has precious little time to spare, listened to my tears of frustration.  My colleagues will ask how we are.  My students will want to see a picture of Alexander smiling in reassurance… the way kids do. LOVE in all forms.

I am thankful for a seizure.  We have a shirt covered in Alexander’s seizure “aura” to send ahead for his dog.  We are to send 2 shirts… One with the seizure sent and one without.  Our dog will be prepared.  (Alexander’s seizure started while he was in his car seat waiting in the van…. It was the grace of God that gave this seizure a new look and sound, or Ray would have never known he was seizing.)

I am still angry with insensitive people who forget that a person’s life is in their hands.  I will still be calling about this.

But life is more than anger.  I needed to blog it away… and almost immediately I could feel the tension release from my fearful heart.  The anger is poison that threatens to eat all those blessings. 

My heart doesn’t have room for it.

I’m Not Going to Play Nice

I’m tired.
I’m tired of always waiting to post until I can see “what lesson can be learned.”
I’m tired of always trying to put things into perspective.
I’m not going to play nice tonight.

Mr. EMT.
Yeah – you.  The one who had control over my son’s life.  The one who came into the ambulance.  The one who told me I couldn’t ride in the helicopter again.
YOU SUCK.

Mr. EMT.
Yeah – I’m still talking to you.  The one who think’s he’s God.  You are NOT.  I know what my child needs.  I know how my child acts.  I know my child.  You just met us.  Take a minute and listen to me.
YOU SUCK.

Mr. EMT.
Yeah – I’m not done yet.  I was still talking to you when you took my baby away.  How did that make you feel?  Powerful?  In control?  Did you know I was rendered speechless?  Did you realize I was still explaining what Alexander would look like when he came out of a seizure?  I guess you didn’t hear my request for the E.R. to call when my baby arrived…. because they never got it.  You were probably too busy walking away from me.  You never even let me say goodbye.  You just turned – in the middle of my descriptions of Alexander – and walked away. 
YOU SUCK

Was it that terrible to hear a mom ask to ride in the helicopter?  Did you feel you needed to teach me a lesson?  Or did you just not want to hear my request?  Did you decide I wasn’t worth it?  Alexander wasn’t worth it?  What would have happened if you didn’t recognize his seizure?  What if something happened to him because you didn’t know about his: seizures, non reactive pupil due to a cataract, low muscle tone, mickey-button, small veins, blue hands/feet that are normal, etc.  Those are things you should know before you take him away.  You didn’t even know what medicine he needs to break a seizure.  And… thanks to you – neither did the ER. Did you know that I got to drive an hour and a half with that knowledge?  Does it bother you?

No. This isn’t a nice post that ends with … Well – everything happens for a reason at the end. 
I don’t care.
Maybe tomorrow – in the morning – I will have a different opinion of you … Mr. EMT.
I’ve never written something really bad about someone on my blog. But this is real life.

I can deal with the seizures.  I can deal with it all.  Because Alexander takes it all in stride.  I can learn from my son to be content with what I have and love people mercilessly.

But… Mr. EMT – you need to remember that every “case” you have – is or was someone’s baby.  Someone has entrusted you with a loved one.  Tread carefully…. because a little compassion can go a long way.

Thanks for all the prayers.  Alexander is amazing. He is strong and sleeping in the bed.  We are pulling an all nighter’.  Thanks for letting me be a little “real” on the blog.  So often I wait until my emotions don’t write the post – but tonight… I just had to get something out.

Yesterday I Cried

Alexander had a seizure.  His first one since June.  Our third week back to school.  And I cried.
I cried as I left the building.  I cried as I drove home.  I cried when the helicopter told me I couldn’t ride with him, and I cried when we were stuck in stand-still traffic for over an hour on the interstate. There were moments where I felt such self pity.  I will not lie.  Why wouldn’t they just let me ride with him? Why wouldn’t they just let me ride with him?

As I posted yesterday… Everyone has moments where they just… break down.
My post yesterday wasn’t meant to demean those moments.  No matter your circumstances… we all have them.  No one’s “circumstances” are bigger or more than another’s.

In my world, I hear people complain about losing sick days. They complain about the interruption of their schedules.  I hear people complain about … everything … which was my rant yesterday.

But… my tears were just mainly for my baby.  He seized for 5 hours. The why wouldn’t they let me ride with him? – was for his sake… not mine.  They stuck him several times because I wasn’t there to tell them not to.  They gave him medicine that doesn’t break his seizures because I wasn’t there to tell them not to.  His poor little brain seized for hours because the drug that “breaks” his seizures couldn’t be given until we got there…and that took almost 2 hours in traffic.

I just want to kiss it all and make it better.  I want to hug him until the seizures roll by.  Mommies should be able to do that.  Mommies should be indestructible.
 
Truth – I cried for both of us. 
Truth – I cried for him.  Because in the end… I just want him to be ok / happy / feel better.
Today – I am thankful that he “outgrew” his medicine dose. 
Today – I am thankful the Keppra is still working (just at a higher dose).
Today – I am thankful his seizures have stopped.
Today – I am thankful I have a job and coworkers who cover for me when I have to leave.
Today – I am thankful this happened this week instead of last (see news story HERE.)
Today – I am thankful for the friends and family members who prayed for us …. over 100 e-mails, texts, calls, and Facebook messages (I counted.)
Today … I will push away the anger and frustration of a few moments and focus on those things still to be THANKFUL for.
Today – Alexander is crying because he’s ticked we are still here.  What a sweet sound that is.

I debated.  I wasn’t going to link up – because this post needed posted today no matter what day it was…. but – so many people over there have been following our journey – here it is.

*** We are Home ***

You did this for us

A quick post:

Read Evan's Story on MSN

We Love You. We didn't have to write a book.  You did this for us.... AMAZING.  Thank you.

Thank you....

The eyes that are always on us

It is sinking in.  (Please don't misunderstand this post. Our family needs for Alexander to get this service dog.  I will do whatever is necessary to make sure all of my children are happy and healthy.)  However....

The reality of how this will change our life is beginning to set in.  We will no longer even be able to attempt to blend in.  Allow me to explain.

As a mother of twins, people are always staring at you. When I was pregnant, people would say things about how enormous I was (and I was only 6 months pregnant).  People would ask really intrusive questions, like, "Did you use IVF?" or "Are they natural?"  It was as if people felt that had some right to blurt out things because the pregnancy somehow turned off the receptors between their brains and their mouths.  I was once at a store and had the check out clerk as me if I was going to try to nurse the twins.  Again.... totally inappropriate question to ask a total stranger.

Then you have the twins.  Now a whole new level of  "oohhhh... let me see" starts.   For those of you who aren't parents of twins, trust me - this actually happens.  I remember one mother telling me that some stranger actually asked her which child she liked better.  Or another mother recalling how a stranger said, "Oh good - you have a spare."  I know the majority of you are probably sitting there reading this with your mouths hanging open, but let me assure you it is true.  My twins were born at 33 weeks at the end of October.  It would be the dead of winter, flu season, and we would have to go get something from the store.  People would constantly walk up, touch my children on the face, and get right down into the stroller to breathe their germy hellos to the twins.  This might not seem like a big deal, but people - babies, especially premature babies do not have developed immune systems.  The point is... twins make you stand out.  People notice you.  People pay attention.  You don't blend into a crowd.

When I take all three children out now, we can almost blend in.  People want to come over and see the "new baby" - but, for the most part, we blend in.

Next year this time, our days of blending in will be over.  When we walk into a grocery store, we will have a service dog.  When we go to church, the mall, Walmart... we will have a service dog.  I will be so thankful of the service this dog will provide, but it is a little daunting to realize that we will not blend in again.  People will notice the unusual - the dog in a store.  It is ok.


The blessings outweigh the fact that we will once again be on the radar of people who stare.... but the reality is beginning to set in.  Eyes will always be on us.

Oh STINK! I'm stayin' in School!!



This is Cindy.  She was my Best Student Ever.  My Grandma
made her... and I dusted her off for this picture. 
Strait "A's" - I tell you!

 And I have a TON of ideas!!!  First, I must tell you that I was born to be a teacher.  I was that kid.  The nerd who took home left over worksheets to teach my dolls.  The kid who asked for a red pen as part of every holiday gift giving occasion because I wanted to “grade” papers.  I even had “struggling” dolls – who ended up with very low grades and I had to remediate them.  I differentiated before differentiation was cool! 

Alexander grabbing his feet this afternoon. 
Happy Baby in the grass.

So, now I will confess.  I’ve been wondering if school was really the place for me.  I wasn’t sure if I was spreading myself too thin.  Was my family getting enough of my attention?  Should I be spending more time with the twins?  Was I being an effective teacher?  Were my students learning enough now that my attention was sometimes distracted by my family issues?  These are the thoughts that have consumed me the past few months.  It is worse when Alexander’s health is in jeopardy.  It is better/worse when the people I work with are so understanding.  On one hand, it is such a relief that I work with such amazing people – they tell me I can take time when I need it.  On the other hand, it is another reminder of what I have on my plate at this moment.  This has been the topic discussed around our dinner table for a while now.  I believe the topic has been decided.

I’m staying in school! I’ve been off work for a week… and I’m bored.  I miss school. I miss my students.  I miss my co-workers.  I miss adult conversation.  This past week from school was exactly what I needed.  Between Alexander’s 24 hour EEG, Easter vacation, and a conference today – it was just enough time for me to miss my professional life.  I’m going back next year, and I’m thrilled to death about it.

So I have some new ideas I’m excited to try.  I teach in a technology-based classroom, so I want to do something new next year.  I want to teach in a classroom without desks.  I want to get a big piece of carpet, a few couches, some bean bag chairs, and some big pillows and create the ultimate “coffee house” classroom.  I want to put a few big round tables in the classroom for those students who would still like to sit at a desk… but really – why do you need to sit at a desk to learn?  My students spend 99% of the class time doing one of two things.  They are either engaged in discussion with me or each other OR they are working on an activity on the laptops.  So – in either scenario – what does a desk have to do with anything?  Being excited to learn is over ½ the battle.  And – I’m going to bet money that my classroom without desks is going to be exciting to learn in.  Can you picture it?  Students sitting around in little groups discussing communism in China or the social implications of reality TV?

So Picture a Combination of these 3 ideas in a clasroom ~

Replace the kids doing nothing with students working!

Students working like this - in a room that feels like the first picture

You stil need some desks for collaboration.

The other idea I really want to persue is bringing one of my classrooms into a “college” setting.  Some schools are partnering with colleges and offering college classes in the high school.  I am SO the person to do this.  The only issue standing in my way (ok… there may be several issues standing in the way – but one I’m not sure can be overcome) is I do not have my master’s in this content area.  I do have a master’s degree – but not in this content.  Don’t worry – I’m willing to push down doors to see if I can find a crack to squeeze through.  I just cannot take on more coursework at this juncture in life. (I mean… I just decided I was going to emotionally be able to handle going back next year!)

Finally – I saw this really AMAZING idea where students partner with other students in another country to become e-mail pen pals.  I am definitely doing this next year.  I am so psyched to be able to offer this as a learning experience.  I mean… how amazing would it be to e-mail about the culture while we are discussing culture in our lives?!?!? 

So…. I don’t often talk about school.  It is a huge part of my life, but it is difficult to decide what is appropriate to put in a blog.  I certainly feel my dreams for crazy ideas in the classroom are ok to share.  I hope you can feel my passion for teaching because I am re-energized to try new things.  I am going back to work.  My life’s calling since before I can remember what I wanted to do.  I will plan to change the world 180 students at a time for now until I can become a professional blogger and change it a few million a post.

Life Lesson #3: Rubbernecking is not nice

You know when you are driving along and all the sudden traffic comes to a halt?  And you think… “Oh no! This has got to be either construction or an accident.  I’m going to be here all day.”  Then – as fast as you came to a stop … you start to speed back up.  That’s when you spot it – the thing everyone else has spotted.  An accident – but it is already off the road.  Everyone is slowing down to rubberneck.  You know – turn their head to get a good look at everyone and everything involved. It has always bothered me. Now – it is entered into my book as a moral, “no. no.”

Life lesson # 3.  Rubbernecking is not rude – it is wrong.  Now, I know that we have all done it.  I can remember standing on my own front porch to see where the fire trucks were headed when they went through town.  And – I wasn’t alone.  Everyone went out to their porches to see what was happening and to whom it was happening to.  So please don’t think I’m taking a moral high ground here and giving a one-man lecture.  I’ve just altered my perspective….

This photo is one from a Hellicopter ride we took to Hershey. 
I was able to ride - this time.  And these pictures are very
benign... But they are not always...

Yesterday, Alexander had a seizure he couldn’t break.  Thank goodness my father was there – he tended to the twins while Ray and I dealt with the seizure.  We gave his emergency medicine.  It didn’t break.  We had to call for the ambulance.  When they came inside, one man said they already had a chopper on standby.  Another EMT said hi because we recognized each other.  We are “that” family.  You know…. The ambulance family.  The family everyone whispers about.  The family everyone wonders, “what is going on over there?  Why do they have an ambulance come so often?”  You have redneck neighbors, snobby neighbors, the rude neighbors, the loud neighbors, the neighbors with the terrible children, … and then there is us.  The neighbors who have medical emergencies several times a month. 

Usually (isn’t it crazy that I’m even going to say this sentence?) the helicopter lands in an open field down the street.  It is nice because it is private.  It is also nice because the closest house is a home with their own special circumstances. Yesterday, we got a different helicopter.  This helicopter landed at the church right behind my house.  This was the sight of the week!  Look at the helicopter! Landing so close to the neighborhood. I packed up my things, Alexander’s medicine, clothes, feeding supplies, etc.  I grabbed my purse and kissed the kids and Ray goodbye.  We took the ambulance (which provided a bit of privacy) to the church parking lot where I was given CRUSHING news.  I would not be able to ride with Alexander to Hershey (over an hour drive).  I wish I could say that I handled it gracefully.  I wish I could tell you that I just told them Alexander’s most vital information and went along my way.  But the truth is – that would all be a lie.  I sobbed. Those huge, ugly tears.  You know – the sobs that you cannot speak through. I’m trying to tell the doctors that Alexander is a hard stick and they need to use the IV in his head.  And that Alexander doesn’t react to Ativan; they need to use Diastat instead.   I’m trying to tell them what the signs of a seizure look like, I’m trying to explain the “do’s and don’ts” ….. while my heart is breaking, over and over again.  I know the EMT’s on Life Lion must have felt like complete jerks because I wouldn’t stop talking about my 9lb baby.  FYI…. I sobbed like that the entire way to Hershey. But this wasn’t the worst of the story – or the life lesson.

When the decision was made to put Alexander on the helicopter, I got out of the Ambulance with my things and walked to our car.  I had to walk through a crowd of people.  People with cameras. People who gathered to watch the scene.  I got to walk through a crowd of my neighbors at one of my most vulnerable points.  As they watched a mother sob so hard she could not speak because she just put her tiny baby on a helicopter and now has to drive to meet him.  My head was filled with a million worries – not only about the care, but all those “extra” things doctors should know about my son.  I literally could not get a grip on my emotions and it was something that should have been embarrassing to watch.  And yet we do.  We rubberneck.  What happened? Whom did it happen to?  What can I see?

This was someone's pain.  How many
people do you think slowed down
to check it out?

Yesterday I felt like screaming, “Did you all get a good enough look at my heartbreak?”  “Did everyone get a full view of my pain?”  I told you Yesterday I almost broke.

When people rubberneck, it must be to see what is going on.  It must be because they would like to take a good look at someone else’s tragedy.  I can tell you – from the other side of the tragedy – It is embarrassing and lowers your view of society about 100 notches when you become the object of the rubbernecking. 

Remember that…. Every time you look – it is someone’s life at a terrible moment you have chosen to witness.  Maybe the more compassionate thing would be to just look away and allow that family to grieve in private.

Journal before the life lessons

I have a series of life lessons that came from Yesterday.  First, I’m going to write a journal entry of the events of yesterday and tomorrow I can post some of those life lessons.

Yesterday was a day to remember. Or forget, whichever you prefer.

Let’s start at the beginning….  I’ve been struggling.  Struggling with the blog. Is it for me? Is it too depressing? Is it real? Do I really want to be someone who has a bunch of people read my words? If so… do I need to “watch” what I say? *sigh*  I’ve been having a bit of writer’s block because I’m not sure how the blog is coming off. Or maybe it is because I’ve become to aware of how many people are reading it since people have started to hear about Alexander’s need for a seizure dog.  Either way – I have really been struggling with what to say here.

So, then yesterday smacked me right in the face.  Actually – the weekend smacked me in the face.  Here is a rundown.

Alexander’s seizure medicine is in the process of being tweaked.  He has been having these small, barely noticeable seizures.  Ray and I have watched and waited… to see if the medicine would take hold and put these seizures to rest.  The medicine is not the right combination.  This past weekend Alexander had a bunch of mini seizures.  It was becoming an issue that needed to be taken care of.

Yesterday began the chain of phone calls.  I called to discuss with the neurologist what changes to make in his medicine.  I also called the pediatrician about his formula, made arrangements to have his formula picked up, called our lawyer to finalize some legal documents, called the medical supply company to order our supplies, called the pharmacy (who knows us by name…), and made arrangements for the twins to get picked up because I had to rush home after work for Alexander’s PT.  I’m not saying all of this because I want sympathy.  Actually – sympathy is pretty far from what I want from anyone.  Sympathy almost rhymes with PITY and as much as I appreciate people praying for our family, at the same time it makes me sad that we need those prayers.  Yesterday was one of those days when I seriously didn’t know how I was doing it.  Some days are good. Some days are bad.

Some days you have to ask your father to stay over because your youngest son is having another uncontrollable seizure and you have to call 911 again, and he rides in a helicopter again (only this time I couldn’t go with him.), and we go to Hershey again. 

Yesterday I worked to not scare my children when the ambulance came.  I needed to explain why Alexander and I were leaving but they were not allowed to go in their most awesome vehicles.  You know what I told my kids last night as I kissed them goodbye? “Mommy has to go and tell Fireman Sam what to do.  She has a big important job to be the boss of Fireman Sam and I can’t wait to tell you all about it when I get home.”  It sufficed, but this morning Andrew asked me, “Mommy? Can you take care of me? Where am I going today?”

Yesterday was a day of lessons.  Yesterday, I was worried about something so insignificant as a little piece of cyber writing.  Yesterday, I realized that many people worry or become angry over insignificant things.  Yesterday, I just as quickly realized the power of words – to hurt and to encourage.  Yesterday I learned that I’m not a fan of helicopters that don’t let the mother of a little boy ride along.  Yesterday, I was not a fan of seizures.  Yesterday, I thought I just might break. 

Finally, yesterday has past.  Tomorrow I will take Alexander to do a 24-hour seizure watch.  An EEG, video recorder, my baby, and myself will hang out to see what happens.  Tomorrow, I’m going to pray for a seizure so we can get some real information about what is going on with my baby. 

And finally, tonight I just kissed my sweet babe goodnight.