Who Am I

When people told me the Hydro diagnosis would be a roller coaster, I prepared myself.  I knew there would be ups and downs... good days and bad days... and possibly good years and bad years.  But I didn't really prep myself for the ups and downs that can occur within a few hours with this diagnosis.  I didn't fully understand how things can change in simply a few hours, or even a few minutes.  Well, we've had one of those days.

Meagan started off great today.  Yesterday, for the first time in weeks, she only had minimal seizure activity for the entire day.  It was such a 'high' ... knowing she was feeling better... she ate well, .... she barely cried ... and when she was awake, her eyes or head weren't twitching to the right side... her arms weren't shakey....her legs weren't tense.  She was just plain awake. It was so great.

Today started out that way.  I thought we were headed for another similar day.  She had one episode around mid-morning time, but, nothing major like before. So I naturally thought we were still headed on a good path of improvement.  Then the afternoon hit.  Meagan had two seizure episodes..including one during Mass.  And ever since we've been home this evening, she's been on her "pre-medication schedule" of seizures.  She's just had a bad night... bad awake times....and overall is miserable.  She's been inconsolable more times tonight than asleep, eating, or awake.  She looks up at me, so helpless, and cries.. and I feel awful.

This whole night has made me feel strange about myself.  I am a very strong person - normally with a great sense of humor... (actually, I normally have humor or sarcasm at timeswhen I SHOULD be more serious) ... I am this joyful, life loving, happy person.  But nights like this can really get me down.  I turn into this serious, worried, and emotional wreck.  While I felt prepared for the ups and downs of Hydro, I didn't prepare myself for the ups and downs of me.

Nights like tonight I almost feel 'guilty' for being so emotional about Meagan.  I think "Where is that humor ... Gotta stay positive .... We have challenges, but, are doing "ok" so how do I have the 'right' to feel this way?" ....

I guess the feeling stems from being a mother in general.  I want the best for my kids ... and even when  my older 4 children got fussy, I would feel awful for them. I would want to take away their discomfort and make them happy again. If all else failed, I knew the next day would be better... the next day would be ok. Even when they were sick, it was always "Just 2 days on the antibiotic and they will start to feel ok..."

 But with Meagan it's different.  Everything is different.  When she gets upset... or when she has a bad seizure episode ... or when she seems like she's in pain, if I fail to comfort her, I can't conclude the next day will be ok.  Because it might not be.  She may still have the same discomfort the next day.  She may still have seizures the next day.  She may still just have so much going on, that there is nothing I can do to take it all away. 

I realize this post is completely selfish in nature.  I am so blessed.  I have so many supportive people around us ... I have beautiful kids.. I have a great husband.....  But, I also have realized that everyone has their own battles in some way. It doesn't do any good to "rate" our hardships because in each of our situations, a hardship is a hardship.  I know for a fact there are people having a better night than Megs.. and I also know for a fact there are people having a worse night than her.   And the latter is where a lot of my guilt comes from for feeling like I do tonight.  It's what builds a wall around my feelings when we do have a bad time because I know there are always those who are having a worse time.  Who am I to complain when there are worse things in the world?

But I have to continue to teach myself that when it's a bad night, it's ok to say so.  It's a bad night. For Meagan, this is a bad night.  Every parent struggling with a hardship with his/her child HAS to have an outlet.  Whether the struggle is social, academic, physical, medical... temporary or life long ... parents have to let themselves air out frustrations so they can be better parents.  I know I do.  That's the only way I can get up the next day and be Meagan's mommy.  I can't guarantee how her day will go - but , I CAN guarantee how mine will go.  She's the baby. She's the one suffering.  I am the adult.  I have to pull it all together somehow to make sure I am the strong one for her. 

Sometimes, pulling it together is hard for me.  Because I end up in this very strange place.. like being between two people at once.  I'm stuck between humor and serious... worry and confidence .... guilt and need of support.  It's a very odd existence because I find myself, on days like today, asking, "Who am I?"  I've realized that Meagan's Hydrocephalus has not only shaped her life... but also changed mine.  It has changed who I am to the core ... because in any other circumstance, I wouldn't find myself feeling like two people at once. 

The irony of this feeling, to me, is remembering that Meagan happens to have been born on the Feast Day of Saint Padre Pio.  One of the mysteries surrounding the Saint was his ability to bilocate.  The meaning of this Feast Day has come full circle with how I feel on Meagan's bad days. ... except I feel like two people at once. Maybe Meagan's birth date was a small gift from God - a little forewarning through Padre Pio's Feast Day that this journey would 'split' my personality at times.  That on bad days, I would want to be my normal, happy, almost silly self, with unending sarcasm and humor ... but that deep down I would simultaneously feel serious, helpless and sad. 

I will close my rambling selfish post with a small story from today. 

We have a window near the front of our home.  I started to hear knocking on this window a few days ago... sort of like a tapping sound.  I would look, and see nothing.  I thought, ok, it's just the trees or bushes.  Today, the same thing happened... and when I looked outside, there was a cardinal.  A bright, red, beautiful cardinal bird incessantly tapping at our window with its beak.  When that failed, he would fly away about 2 feet, and try to fly into our window - determined to get in somehow.  This continued throughout the day.  Because of this, I decided to read about cardinal birds - why was this bird constantly tapping at my window? what was so special about them? What I read hit me like a ton of bricks.  Every site I found stated that the red cardinal bird is a symbol of faith... a reminder to keep the faith through circumstances that may look bleak, dark and hopeless.  It is symbolic of Christ's blood to remind us all of his sacrifice for us.

Thank you, Lord.  Thank you for that little sign I needed on a day like today.  Thank you for telling me to "keep the faith" ... for letting me know it's ok to feel like two people at once.... because the only way I can "keep the faith" are by going through days like today with Meagan.  I have to hit the low, so I can get back up again and be that positive force in her life.  I have to sift through the worry to grab on to the confidence.  I have to be serious to again find my humor.  

So...Who Am I? A faithful mother to a special daughter.  And that is a definition that won't change. 

What Meagan looks like after an episode when she passes out asleep. This has been her night pretty much.  Keep the faith Megs. It's just one night.  Tomorrow can be better.



A small look at what happens when Meagan has a seizure episode.  This one is about 3 minutes.  She's had several that have been 8 and 9 minutes long. :(