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Wednesday, November 30, 2011

The "Not So Lost" Sheep

I am not a religious person, and I never have been.  As you can imagine, this statement doesn't win me a lot of friends.  But, I don't feel "lost" or "uncertain" about my spirituality. I absolutely believe in the greater good, in something bigger than myself, and above all else, I believe in love.  The problem is, until this past year I kept looking for "it" where most people do, in church.  This is not to say that people cannot find peace and happiness in a church.  In fact, I have great respect for religion in that it has the ability to bring out the best in some people.  It provides comfort and strength to people when they have nowhere else to turn.  It just doesn't happen to be where I've found mine.

I try not to get wrapped up in the idea of heaven and hell being real, but I certainly think about it from time to time.  I think that I, like most people, would like to believe that heaven exists.  Of course everyone would like to believe that losing a loved one can result in something positive.  And, I will admit to having read, "Heaven Is For Real" and taking great comfort in the author's idea of heaven.  I absolutely believe in the existence of Hell, because I've been there.  For me, it isn't a fiery underworld dictated by a fallen angel.  It's being thrown in the face of  your biggest fear, and the feeling of helplessness and powerlessness that goes with it.  And as awful as it is to realize that you are experiencing what no one would argue is indeed "hell on earth", it also happens to be the very thing that brought me to my current state of spiritual peace. 

This is where my belief in love above all things comes into play.  When I felt lost, with nowhere else to turn, and I was begging and pleading for someone to tell me "why", I got an answer that I didn't expect.   I will never know the "why" of any situation, but somehow that doesn't seem all that important anymore.  I don't believe that there is some vengeful, wrathful god handing out punishments, deserved or otherwise. I feel that examples such as these are the reasons that religion sort of loses me. I believe that life just happens, and it's what happens DURING the tough times that give you strength and peace.  It's the people around you, lifting you up and giving you a portion of their own inner strength that keeps you going.  PEOPLE are what matter, and their love and support during times of great pain is more spiritual than any sermon I have ever heard.  For me, "God" is making a warm meal for anyone who just needs to know that someone cares.   It's hearing words of encouragement from those around you when all you can see is despair.  It's offering money, food, services, or just an ear when someone truly needs it.  I believe that there is nothing that we can do as human beings that means more than loving each other.  No rules, no judgements.  Just love.

Many of you will see a parallel between my beliefs and parts of religious belief, and I wouldn't deny that for a second.  I welcome ALL support and ALL prayer.  It makes me feel good to know that people would take time out of their day to pray for ME.  Because prayer is important to them, and they take comfort in it's power and ability to restore their faith.  What could ever be wrong with accepting that?  So, I say thank you for your prayer.  Thank you for sharing your faith with me.  It matters to me because YOU matter to me.  And I will never be lost as long as I have you.

Monday, November 21, 2011

Good Day

Sometimes you just know when you're going to have a good day.  I think today was that day for me.  Well, I'll let you be the judge.  I "woke" up, or rather got out of my bed because you can't really call it sleep when you get up every hour and half, can you?  But, at least I was able to get up, right?  Anyway, I noticed that my youngest (aka, my little pain in the derriere) sounded particularly crappy.  As in, he was hacking up a lung and his chest sounded like he was breathing through water.  This is usually a pretty good sign that we will be making our monthly trip to the Hilton/Blessing Hospital pediatric unit.  However, instead of freaking out, I just gave him his medications, let him do his therapy, took a shower, and packed a bag before heading to the clinic for what I was sure was going to be my one-way ticket to the hospital.  

I picked my daughter up from preschool and gave her the little bag I had packed for her to play with at the doctor's office.  She said, "Mommy, are we going to see Dr. Minnick or is Eastie going to the hospital today?"  I told her that it may end up being both.  She just shrugged and said, "Ok, did you pack my Mobigo?"  When I informed her that it was in the bag along with all the games that go with it, she said, "Thanks Mommy!  You're the best!  Now I will have something to play while the doctors fix Eastie."  She then began telling me a story about school and asked one of her questions in that way that only a 4-year old can.  "Mommy, how big is Daddy?"  I found myself feeling grateful that I had such an easy-going, happy little girl.  She wasn't phased at all that our routine would be interrupted, or that she would have to sit in a doctor's office for what has proven time and time again to take hours upon end.  She was just happy to be talking to me about her day. 

The day got better because not only did Easton NOT end up in the hospital this time, he also didn't have to have any blood draws or chest x-rays.  This NEVER happens.  I had packed a bag for both of us in anticipation of at least a three day stay, and instead I was going home!!!  Yay!  I got home, put Easton down for a nap and made lunch for Morgan.  Just as I finished doing that, a friend from my children's school called and said that Logan had hit his head at recess.  I wasn't phased at first because they are always really good about calling when a child gets hurt at school.  But, as I listened to more of the story I realized that we were probably dealing with a concussion.  Really?  So, instead of taking a nap while Easton and Morgan slept, I called my Dad to watch them while I picked Logan up from school and took him to the emergency room.  The doctor decided that after her neuro exam that the benefits of a CAT scan would not outweigh the risks of radiation exposure.  So, he probably has a mild concussion and we just have to watch him for the next week or so. 

So, see?  A good day.  Instead of spending the night in the hospital, I am home with my family.  Instead of all of the things that can happen with severe head injury, I'm simply watching for signs of a mild concussion.  And I noticed while they were examining Logan how nice it was to say that he was a typically healthy kid.  I got to answer "yes" to questions like, "Are his immunizations up to date?", and "no" to ones like, "Has he ever had any major illnesses?"  It was so nice to hear that come out of my mouth.  If you'll recall I had called my father to come sit with my children while I took Logan to the hospital.  He answered, said yes, and showed up.  That, in and of itself, is something for which to be grateful.  Not everyone has a Dad that will do that, or that is able to get away in the middle of a workday.   Also while we were waiting in the ER, Easton's neurologist called me and told me that because I didn't see a significant decrease in his seizures with medication increase that I could hold off going up on it this week.  He's still having seizures but I'm grateful to not have to go up this week. Even if we end up having to do that in the long run, today we don't!  And, if you think about it, TWO of my children DID NOT have to see a doctor today!!!

Plus, I don't know if you remember, but another amazing thing happened today...I showered. 

Monday, November 14, 2011

Honesty is the best policy

Honesty is the best policy, right?  I mean, that's what I tell my children.  My entire blog is based upon not being afraid to tell the truth.  And, I stand by this claim 100%...unless of course the persons reading this happen to be my husband or my children.  I am a woman after all, and sometimes it is probably just better to come up with a really good lie/compliment in order to ensure your allowance back into my house.

My propensity for honesty has actually gotten me into trouble throughout my life.  Of course there are those moments when I should probably just keep quiet so as to dispel any sort of awkward situation, and instead find myself all but standing on my chair in the middle of the room sharing my version of the truth.  But, recently  the trouble has been that I've noticed my children being entirely too honest about things...mainly me.  Here are a few examples:

1. "Mommy, when I get big are my boobies going to get long and fall down like yours?"  -Addison

2. Morgan:  "Mommy, is art a talent?"
    Me:  "Yes it is."
    Morgan:  "Mommy, does everyone have a talent?"
    Me:  "Everyone is good at something, so yes."
    Morgan:  "Oh well, anyway...when are you going to get a talent?"

3.  "You know, Mommy, you may think you are young right now, but you would be dead in cat years."  Addison

4.  Morgan and I once went into a public restroom and shared a stall.  This was our conversation:
     Morgan:  "Mommy, can you get my toilet paper ready right now?"
     Me:  "Ok, why?  You can just get it yourself when you're done, can't you?"
     Morgan:  "Well, yes, but you are gonna go potty next and I won't be able to throw it in the potty seat because your bottom is SO big and there won't be any room."

5.  I recently sang at a wedding, and I hadn't done so for many years.  I was enjoying the comments from friends and family praising the job I had done.  But, when you have children you should never worry about getting a big head.  They tend to fix that problem.
Me:  "Well, that was fun.  What did you think?" (to my son, Logan)
Logan: "Yeah, do you think it was the microphone that made it sound bad?"
Me:  "Excuse me?"
Logan:  "Well, I mean I've heard you do it at home and it was good.  I'll bet it was the microphone."

And while we're on the subject of telling the truth, men should know that there is only one way to answer the, "how do I look?" question. Here's the thing, if she thought for one second that she looked anything less than great in what she has on, she never would have come out of the dressing room in the first place.   You just smile and tell her she looks great.  EVERY SINGLE TIME!  It is never acceptable to give us your honest opinion when it comes to something we're wearing.  In fact, if a woman ever asks a question related to her appearance just let your mind sort of glaze over and pretend that she just told you that your favorite team just won the pennant.  Even if she says, "No, I REALLY want you to tell me the truth."  She is lying.  Go with the pennant, trust me. 

I'm ultimately going to stick with my original premise, that is, HONESTY IS THE BEST POLICY.  Unless of course you have ever inhabited my uterus, or if I have agreed to take your last name.  In either case, you still owe me.

Monday, November 7, 2011

Stinky Face

Have you ever read I Love You, Stinky Face, by Lisa McCourt?  Well, it's this little book of genius that I discovered yesterday and this is why it, along with a visit from my mom, saved me from a day of destruction.

Yesterday started out pretty well actually because I got up earlier than usual (because I'd actually slept longer than an hour) and worked out.  I then got to take a REAL shower because it was Sunday and my husband was home so I didn't have to wipe, feed, or yell at anyone while shaving.  After my shower, I decided to check out my facebook page while waiting for my son to wake up.  I was a little nervous that he'd decided to sleep in so late, but decided to write it off as the difference in time change and enjoy a few moments of peace.  While on facebook I noticed a fellow "mommy of an epileptic child" said that her morning was ruined because she was awakened by her son having a seizure.  I felt that familiar pang of fear at the thought of being awakened in such a way, and my mind flashed to the image that plays repeatedly in my head.  I read the responses to her post and noticed that she eventually wrote that now "things were better."  I couldn't help but think about that word, "better."  What does that mean in this new world we live in?

A few minutes later, my son woke up and I went down to get him out of his crib.  Instead of the silly smile he usually greets me with, he looked up at me slowly and saw this droopy-eyed far away expression on his face.  I picked him up and immediately assessed him for signs of a seizure.  No tremor in his extremities, no fever, no cough, no respiratory distress.  Not even a runny nose.  Ok, so what was the problem?  Fear gripped my heart further as I set him down and he didn't protest as I walked away.  This was not the same baby I'd put in bed last night.  Was it all starting again?  Was this something new?  Who should I call?

I ended up calling my favorite pediatric nurse and very trusted friend, Carla. I didn't know what I wanted her to tell me.  In fact, I don't think I was expecting her to say anything, but she knows Easton and she knows me and she knows the pain and fear associated with having a child who scares the crap out of you on a daily basis.  I just needed to hear a voice that I trusted.  Just talking to her made me feel a little better, and I decided to just watch him.  I called my dad because that's what I do when I freak out, and he came to stare at Easton with me.  It's just become part of our lives...staring at Easton.  My dad suggested that maybe he just had a headache or a stomach ache or something.  This hadn't even occurred to me because we don't "do" easy.  We don't just have "headaches."  I gave him Tylenol anyway and an hour later he seemed to perk up a little.  However, the damage had already been done.

At the first sign of something possibly being wrong, I began a mental checklist of all the things I would need if we ended up in the hospital by the end of the day.  I even went down and put on my best "living in the hospital" jacket because it's comfortable and has pockets.  I was so glad that I'd already showered because that would be one less thing I'd have to do in a hospital room later.  This is how I live.  Just when I think things are getting "better" something comes along to slap me in the face.  You can't live in a state of "fight or flight" every single day.  You can't be "strong" all the time, and so I wasn't.  I mentally shut down yesterday.  Easton began to act more like himself, and as he got better and better, I felt increasingly worse.  My head hurt, my stomach hurt, and I didn't want to do anything but sleep.  Unfortunately sleep doesn't happen either, so I just got through the day.  Sometimes this is all I can do.  Luckily, things were about to take a turn.  It wasn't a cure-all or a permanent fix to the problem, but it was just the band-aid I needed. 

My mom came and got me out of the house.  Just the walk to the car in the fresh air helped my mood a little.  We went to a restaurant and shared some comfort food, and it was amazing.  We then did a little mindless shopping.  I didn't need anything from the store, but what I did need was to not be in my house counting seizures for a few hours.  Then, just as we were getting ready to leave I found this little book.  I Love You, Stinky Face is a book about a little boy whose mother tells him she loves him right before bed, and he then proceeds to test the extent of her love by asking several "what-if" questions.  "But Mama, but Mama, what if I were a super smelly skunk, and I smelled so bad that my name was Stinky Face?  But Mama, but Mama, what if I were a big scary ape?  Would you still love me then?"  I read the whole book while standing in the checkout line, and began to cry.  Of course she would love him if he were a super smelly skunk.  Of course she would still care for him even if he were a big scary ape.  She would give his skunky-smelliness a bath, and she would make a big banana birthday cake to feed her hungry ape.  She would sit by his bed and hold his hand while he was ill, and stay strong for him even when she thought she would surely break.  And she would come pick him up, and take him to eat some super-indulgent food and do some mindless shopping just to scare away a crappy day.  And she would do this because she is his mother, and that's what mommies do.

I love you, Stinky Face.

Saturday, November 5, 2011

A Rough Landing

Well we jumped, and just as I'd suspected,  a parachute would have been nice.  We finished weaning the Keppra last Sunday.  By Tuesday he began having strange movements that were eventually identified as seizures.  They obviously weren't as dangerous as the first one, but they did warrant another trip to St. Louis Children's hospital via fixed-wing airplane.  However, this second time around was decidedly different from the first. 

The first time we left I had tunnel vision.  I was petrified, uncertain, shaky, confused, and pretty much on the brink of total meltdown.  This time I was a little more in control, partly because Easton's situation seemed far less dire and partly because I was involved in the decision making process.   While we were waiting for the transport team to arrive Easton was yelling at everyone who came into the room, pulling the iv pole over, and eating a popsicle.  This was a decidedly different scenario than his first trip.  We arrived at Children's safely and were taken to our room.  We had a roommate, and that can be interesting when you're trying to share a room and sleep with two babies and two families.  However, it was very nice to talk to someone who had some idea of where I'd been.  Our stories are very different, but the look in her eyes was oddly comforting.  We both live in a world of parenting that, thankfully, most parents will never experience.

At first we felt like the trip had actually given us a few more "answers" to our never-ending questions.  But, like all things associated with this roller coaster,  we had some unexpected discoveries as well.  We were told initially that the little jerking movements that our son had been making all day long, every day for the past 6 months were just "myoclonic jerks" and that they weren't harming him.  Hopefully he would grow out of them eventually, and we'd forget they even happened.  Then, while taking two of our other children to the doctor for a persistent cough, I received a call from the neurologist saying that upon further review of the EEG, they had come to a general consensus that the movements were, in fact, seizures.  I immediately felt that knot in the pit of my stomach.  The fear that sort of bubbles up all the way from the bottoms of your feet was returning full force.  My mind began racing with scattered thoughts and possibilities.  If you could have seen my thought process it would have looked something like this:

Ok, so if they are seizures and he's been having them every day all day long for 6 months, how could I have missed it?  What have we been neglecting to do for him?  Is he gonna need more medication?  Will I let them snow his brain again for something that doesn't seem to be doing irreparable damage?  Why has he been progressing so much physically and cognitively if these are seizures?  Do the docs really know or is this another guess?  What will I tell Jeff?  This will kill him.  I don't want to be the one to cause that look of pain on his face.  Maybe I won't tell him.  No, I have to tell him.  He's my partner, my teammate, my strength when I can't stand anymore.  He has to know. 

I actually probably missed some of the conversation with the doctor because these initial thoughts were kind of taking up all of the room in my brain.  I did tell Jeff eventually, and I had been right about his reaction.  He was also furious and confused, but mostly just hurt and I've seen that look on his face too many times in the past year.  I knew he wasn't mad at me, or at Easton, just at the whole stupid situation.  I also knew that nothing I could say would change how he felt at the moment, so I just picked up my baby, sat in the rocker with him and read an alphabet book.  I just let the tears roll silently down my face.  Now the jerking movements I felt as I held him meant something new and I couldn't deal with the pain that brought.  So, I just "ignored" them and finished the book.  I realized that our life is kind of like when you learn to go to the basement during a tornado or a bad storm.  You know that it's what you're supposed to do, but the truth is that the basement doesn't have any magical powers.  It doesn't guarantee that once you get there you are undoubtedly safe from any possible harm.  It's just your best option.  That's all the security any of us have.  My family is just a little more aware of that now.

Since then I've had time to clear my head and to think about my next move.  I could have stayed angry, but I don't have time to waste on being mad about something that I can't change.  I had to rally my support system, and remember that he's still here in this moment and that is something.  I've begun to look at alternatives to treatment for him that include dietary changes, homeopathic remedies, and pretty much anything else I can get my hands on at the moment.  I may not be able to change any part of the situation, and I even know that I cannot "save" him.  But, I will sure as hell die trying.