Welcome to My World

Regardless of where we are, life comes at us. If we want to cherish the moments, they tend to pass us by faster than we can savor them. If we would rather skip a day, it seems to linger endlessly. But life is what it is, and we have to make the most of what we have and focus on the good aspects, large or small, to truly relish our life.

Tuesday, November 30, 2010

Giving Thanks

Yesterday we got back from a week long trip to see my family for Thanksgiving.  Last week was also a time of celebrating birthdays in my family: first my brother, then my husband, actually on Thanksgiving this week, and finally my father.  It was a full week, filled with travel, excitement, fun, and weariness.  But most of all, it was a week that was.

We had the opportunity to spend time with friends and family we hadn't seen in six months or longer.  We had the ability to have some heart to heart talks.  We were able to encourage one another and see how we have grown.  We were able to laugh and share our concerns with each other.  We had the chance to be a family.

The kids all had a blast, staying up to all hours of the night with cousins that they had counted the days to see.  They performed a play loosely based on Barbie's Mariposa video, which seems to be the girls' favorite video save the new Tinkerbell.  They played with trains and books; they fought over who got to play with which toy when.  They fussed when they annoyed each other, but they got over it quickly and were all too sad to leave when it was time.

We got to see my dad, who looked better than he has had the last couple of years.  He was trying to communicate with us with gestures and expressions.  He wondered over and over again who this tow-headed boy was that seemed to belong to us.  Benjamin definitely takes after his daddy, as there is nothing De Benedetto-ish about his features whatsoever, but I think my dad eventually got the picture that he belonged to me.  We never know from visit to visit if he will still be here the next scheduled trip, so we are grateful for every memory my family is able to have with him.

Of course Thanksgiving is a time of reflection, but it shouldn't be limited to just one day of the year.  We are family, and even though we are only able to gather together twice a year, we enjoy what time we do have to spend together.  Each moment we get to spend with one another is another chance to grow closer as a family. 

We are all children at heart in one area or another, and I think I could learn a few lessons from this past week.  Don't be afraid to speak up for what is yours in a kind manner.  Be willing to share what you have with someone else, because it will be returned to you eventually.  Run, laugh, enjoy life, but not at the expense of others.  Watch a piece of life and when you see something you want to emulate, go ahead and put on the play, act it out for someone else to enjoy.  It's alright to be flexible with your schedules once in a while:  the unexpected doesn't have to be scary, it can be lots of fun.  Go outdoors and let the sunshine penetrate your pores, warming you up.  Come inside to the arms of safety when a cold, wet wind appears out of nowhere.  It's ok to be sad to say goodbye to someone you love even though you know you will see them again.

Most of all, be thankful for every single little drop of sunshine that enters your life.  You don't know how long it will last, but you do know that it brings life to your bones and warmth to your heart.  Look for the sunshine after the rain and see the rainbow that appears.  Take nothing for granted, but be grateful for all.  That's what I learned this week.

Monday, November 22, 2010

A Nice Talk

I got to see a college friend yesterday who I haven't seen since my wedding.  Since I had moved from Texas to Georgia, we hadn't had an opportunity to get together all these years.  It brought back old memories as we talked a little about those days.  What was really nice, however, was the fact that we could discuss the past few years and how life is now without pause.  There was no awkward empty space that sometimes occurs when you meet up with past buddies and discover you have nothing in common anymore.  It was the rare moment that happened when I realized a friendship surpasses time and that we were able to pick up where we left off, catch up, and keep going from here.

We went to a local neighborhood park so the kids could have fun playing while we talked.  The older children played on the monkey bars and the slides most of the time while I pushed Gabriela in a swing.  We stood there talking in the cool breeze of the afternoon sun while my daughter expressed her joy at being in the great outdoors.  We reminisced a little, but then we talked about life such as it is now.

We talked about balancing life once you have children, and how it changes.  We discussed honestly how it's not always a bed of roses, but that they are worth the hard times, and they are a joy.  We spoke of how relationships change once you have them because of all the responsibilities associated with raising children.  We talked about balancing your relationships with others and not losing touch with what is important.

I think that for me, one of the most encouraging aspects of the conversation is show children truly are our education as much as we are a part of theirs.  We never stop learning.  when we take a moment to step back, we learn a great deal about ourselves and about life through them, and there is oh, so much still to learn!

That's one of the reasons I started blogging.  Sometimes I like what I learn, like the growing capacity to love.  Sometimes I don't, like the amount of patience I thought I had versus the amount I actually have.  But every day, if I look closely enough, I can learn something by looking at things through their eyes or by seeing them through the eyes of another.  I see how much they really do rely on me.  I see how much they are dependent on me to show them how to live.  I see how much their escapades are metaphors for the important matters of life.

Sunday, November 21, 2010

The Journey

In order to actually take a journey, one has to travel.  There is a beginning point and a destination.  Then of course, you have the stops, sights, or reference points along the way.  Movement of some kind is involved, or else one will go nowhere.

We left the house around 5:30 am yesterday morning.  Richard had put all the bags in the car top carrier and in the minivan Friday night so we'd be ready to go after a few hours sleep.  We woke up a little after 4, got ready, and loaded up the kids.  We traveled for a couple hours before stopping for breakfast and had a fairly uneventful beginning, not withstanding the key issue I mentioned Friday night.

We stopped at the Waffle House for breakfast, a place that all regular road trip travelers should try at least once in their lifetime.  It's friendly, yummy, and you can get hash browns any way you like them: scattered, smothered (in onions), covered (with cheese), diced (with tomatoes), capped (with mushrooms), chunked (with ham), peppered (with jalepenos), topped (with chili), or country (with gravy).  Everyone had waffles, the kids got to move around a bit, and we got to watch the children marvel at the cooks behind the counter.

For the next part of the journey, the kids watched videos while Richard and I got a chance to talk.  I think it was the first time we got to talk for more than 15 minutes with kids in tow and awake without being interrupted for years, literally.  It was quite refreshing.  We had a chance to bond over things we hadn't had the opportunity to discuss in quite a while.

Then we hit Mississippi and Louisiana.  Construction for 27 miles at 35 mph or less, 3 accidents, more construction with lane shifts and cement pylons, and lane closings made that part of the trip seem endless.  But the kicker came after all that.  I kid you not when I say it took us an hour and a half to get past the last 10 miles to the border of Texas.  10 miles before the border, we hit a lane closing due to construction.  At 8 miles, police sped by traffic that was just about ready to move again, and traffic stopped again.

At mile 7, an hour later, 5 police vehicles, including state, county, and local police were parked on the side of the road with a pickup, a semi, and  one man on his knees surrounded by 4 officers.  I'm guessing it was either a coyote or drug smuggler, as nobody appeared injured, and no emergency vehicles were on their way.  Then we almost got to travel at regular speed.  Mile 5, at the home stretch, we saw bright orange diamond signs posted road work for the next 3 miles.  Uggh!  Would this construction insanity never end?

Then, we were on the bridge!  At last!  Nyssa clapped her hands excitedly as she read the Texas state line sign and we all rejoiced along with her.  Thankfully, the rest of the trip was smooth sailing, and the children fell asleep for the last 45 minutes of the drive.

Life is such an adventure.  Some parts we are aware of; we know we are going to pass through specific points, such as potty training, school, and jobs.  Other aspects seem to be roadblocks keeping us from our journey, making it more difficult, such as sickness or loss of a loved one.  Then we have construction.  None of us is perfect, and we could all use some repair work every now and then.  The actions of someone else may even bring us to a complete halt for a while, but eventually we go on.

Then, if we have followed the right directions, we find ourselves crossing the bride in excitement, ready for the destination.  The rest of the trials are all but forgotten.  We look towards the house and the loved ones.  We look toward the prize.  We lay back and close our eyes, knowing that all is well and that we will soon be there.

Friday, November 19, 2010

Road Trip

We are on our way to Texas tonight, or at least we hope to be.  I had all the laundry done and the kids are packed.  I am packed and Richard is packed.  The diaper bag is packed, and so is the bag with all our extra clothes for while we are in transit.  We've got everything we need from deodorant to DVD's.  Well, we have almost everything.

For the last 3 hours, we have been looking for the keys to the car top carrier.  Since everything won't fit in the minivan with 6 people going on a 8 day trip, the carrier is essential.  We can get in it, but we can't lock it.  And if you are not familiar with how one works, let's just say that it will not stay closed unless it is locked.  Driving down the highway at 70 mph is not exactly palatable when luggage is flying off the top of your vehicle.  So, we are stuck.

It's interesting, isn't it?  You go through life's journey and you think you have everything you need.  You have all your ducks in a row and all is well.  Then you realize that everything you own means absolutely nothing unless you have the key that holds it all together.  Everything will fly out during the journey, putting everyone around you in jeopardy.  Then when you get to the destination, you realize that the one thing you needed was just a simple key.  If you don't have that key to keep everything in its rightful place in your life, nothing matters, and all is naught.

Excuse me while I continue looking, because it won't do me any good to go on this journey in life if I don't have the grace that holds me together until I reach my destination.

Tuesday, November 16, 2010

Running Away

I will never cease to be amazed at how we tend to want to be somewhere else.  We seem to strive for something else, to be somewhere else, to do something else.  Else, else, else, something other than this.  We are not often happy with where we are.  We have lost the meaning and the understanding of contentment.

Yesterday morning, Nathaniel did not want to go to school.  He wanted to stay home, curled up in bed, sleeping.  I can't say as I blame him, because as soon as he left, I crawled right back into bed until the younger ones woke up.  Nevertheless, he got dressed, put on his coat and donned his backpack, for his trip out to the school bus for his final destination.

When he came home, he fought every step of the way.  He refused to get on the bus to come home.  When the bus driver delivered Nathaniel, he resisted coming in the house.  He wanted to go back to school.  He didn't want to see his teacher or his friends, but he wanted to go back to school.

I brought him in the house where his brother and sister were, though that was a struggle.  No sooner had I closed the door and picked up Gabriela who was determined to follow me to the curb, when I heard the door open once again. Nathaniel had darted off.  I tried to leave Benjamin and Gabriela in the house, but they were fussy and Benjamin was following me outside, in the cold rain, with no coat and no shoes.

So I had to make a quick choice.  Nathaniel did not come when I called, so I had to get Benjamin's coat and rain boots on him, as well as put on my own coat.  I bundled Gabriela up with me as we went in search of my runaway.  Even though Nathaniel had made it over halfway across the block, I knew I had made the correct decision.

When I finally reached him, Benjamin and Gabriela in tow, Nathaniel was so downcast it brought an ache to my heart.  His blue eyes were red, tears streaming down his face.  "Mommy, I wanted to go back to school.  But I couldn't remember the way."

I gave him a hug as he pulled at my heart strings, took him by the hand, and started walking back towards the house.  "I know, honey.  School is a long way from here, and I want you to be safe with me."  He did not understand why he couldn't go back, nor did he understand the repercussions of running off the way he did.  But we walked together back to the bus stop to get his sister.

Just like Nathaniel earlier, we all find ourselves wanting to be somewhere else.  He wanted to stay in his comfortable bed rather than get up and explore life.  Then, after a good day in class, he was not ready to move on.  Instead of recognizing the end of a period in his life, he wanted to prolong it, to go back to where the fun experience was.  But the time had passed.  The bus had gone, and he had no way of getting back.

When he tried to relive it, he was caught in the cold rain, a storm of life that he would not have had to experience if he had stayed where he belonged.  He was not content to come to the warmth of the house, to the company of his family.   Fortunately, even as Nathaniel was running away, I was there, getting bundled up to go after him.  Even before he was ready to come home, I was waiting for him to take my hand.

Sometimes we try to relive the glory days, or to prolong a moment in time that has passed.  There comes a time when we need to move on, to keep going.  If we try to go back to something that we should leave alone for the time being, we may find ourselves in the midst of cold, wet weather, all alone.  And when we realize that we are lost, unsure of where to go, that is when another can reach out his hand, let us know we are not alone, we have been found, and we are led safely home.

Monday, November 15, 2010

Something More Than Feelings

I am so glad that life isn't about how you feel, but about what you do with those feelings.  Things don't always go according to plan.  Circumstances arise that are beyond your control and may make you feel like you're tied to a pole with no way out.  Situations come that may take you on a mountaintop experience or down into the toughest white squall known to man.  But what do you do when you feel your ship is about to capsize with you in it?

Some days I am overwhelmed by everything.  Thoughts invade my mind that tell me I can't accomplish anything, that I'm useless as a wife and a mother.  They threaten to paralyze me completely, and there are moments when they succeed and try to drain the life out of me.

They would succeed if it weren't for one thing:  they are total and utter lies!  Every single one of them, and when I realize it, I get angry.  I get angry at those thoughts that would lead me astray and make me become just what they accuse me of being.  I get mad at those who would tell me that I can't do this, that I can't get my house in order, that I can't get my children the care they need.  I get angry with the negativity that would threaten to harm my family through getting me to believe those lies.

I may not always feel like Wonder Woman, and my house may not look like Donna Reed's, but there is one thing that it has:  love.  Let me say that again:  L-O-V-E.  Love.  My children know I love them and that they are important to me.  My husband knows that he comes before them.  My friends know that I care about people above all else.

There's something else in the middle of all this, too.  People who know me know that I love the TRUTH.  And the truth of the matter is this:  I have many faults, and housekeeping has been one of them, and will probably be a thorn in my side for a bit longer, but I have been getting better.  I've been able to keep the hallways and the bathrooms clean.  I've been able to straighten the kids' rooms up at least twice a week.  The family room floor is clean, the dining room is clean, and even my bedroom looks better this week than it has in two years.

Even when I was mentally attacked by those useless thoughts on Saturday, the truth was still there, and would not be silent.  That's one thing about the truth.  It will always rear its beautiful head and, if we allow it, will save us from those thoughts, from naysayers, and even from ourselves.  When my world was rocked, I was also confronted with the truth by my dear husband who kept knocking at the door of my mind until I let the light shine through.

Sometimes we have to push through the frustration, the anger, the lies that we have believed about ourselves, and let the truth be revealed.  There's the saying..."You shall know the truth, and the truth will set you free."  I believe that, and I know that regardless of how I feel, the truth is still there, steadfast, immovable, a fortress that cannot be shaken.  It is my rock when fiery darts would wound my soul.  It is the healing balm of Gilead that is placed on my scars and takes away all traces of injury.  It is not a feeling, no.  It is a fact, indisputable, and this is that truth:

You are somebody.  You are special.  In spite of all your flaws, in spite of what you or anyone else believes about you, you are special.  You are priceless.  You are a diamond in the rough.  You mean something important to this world.  Ignore all that would tell you otherwise; ignore the thoughts and the feelings, because there is something greater than even what your mind would say to you.  This is not a feeling, this is something more:  this is the God's honest truth.  You are a masterpiece.  You are worth far more than rubies or gold.  You are cherished.  You are loved.

Sunday, November 14, 2010

Sad or Just Stubborn?

We don't always like being responsible.  Sometimes we just want to play and let nature take it's course.  We want to be free to run around, make a mess, and go our merry little way, remaining a happy go lucky child with no responsibilities.  I have some news for all of us:  even little children have responsibilities, and they act just like us.

Benjamin's latest excuse for not obeying is the following words, "But I'm sad."  Sure, he was laughing and playing only moments before, but if I tell him to put his cup in the sink, those words come out of his mouth.  "I can't because I'm just sad right now."   Uh, what?  You were just giggling for all you were worth.  Oh, I see, I told you to do something you don't want to do so all of a sudden you are sad.  You are too sad to do anything.  Got it.  Um.  No.

"Benjamin, put your puzzle away," I will say.

"But I'm just said right now."

Sometimes I'll give him the benefit of the doubt, just in case he actually is sad about something.  "Come talk to me, honey.  What's wrong?"

"Well, I'm just sad."

"Why are you sad?"

"Well, I don't know.  I'm just sad."

"Did something happen to make you sad?"

"Well, no."  "Well" has become his favorite filler word at the moment.

"You were just laughing but now you say you are sad.  What happened, why are you sad now?"

"Well, my puzzle.  I'm sad."

"Are you sad because I told you to put it away?"

"Well, yes."

"Are you still playing with the puzzle?"

"Well no."

"If you are finished playing with the puzzle, then you need to put it away now."  By this time, I've figured out that the only reason he is sad is because I'm telling him to do something he doesn't want to do.  So I put my foot down and, in spite of his hemming and hawing, he has to put it away, much to his chagrin.  He doesn't want to put it away, he doesn't like having to put it away, but he does it because he knows he won't like the consequences if he disobeys.

We have a choice when it comes to life.  We can either dig in our heels and refuse to do something, making it harder on ourselves and still have to do it later, or we can just do it and get it over with.  It's all in the way we respond.  When we do things, we have to strike a balance between playtime and responsibility.  Yes, it's fine to have fun, it's good for us to cut loose once in a while.  I love to laugh; it's good medicine for the soul.

But when we have a responsibility, do we go ahead and do it with a happy heart or do we suddenly turn into a sourpuss?  Guilty am I, as charged.  There are times I look at the kitchen and say, "Do I really have to do this right now?  I'd rather read a book.  Can I take a bath instead?  How about watch this show?"  Granted, sometimes I do leave it until morning, but it's still there.  So I get myself moving and straighten things up that I didn't get to the night before.  It's clean up.  It's responsibility.  It's my job.

Saturday, November 13, 2010

Sometimes You Feel Like a Nut

Some days fly by like I'm on top of the world.  Other days seem to drag on in wearisome trappings filled with mud puddles and rocky, mountainous terrain steeper than Mount Everest.  They may begin the same way, by opening the eyes, but the way in which they are lived determine what kind of day it ends up being.

I slept in this morning, for the first time in I don't know how long.  I actually got 8 hours of sleep, a mother's dream!  My dear, wise husband realized I've been beyond tired and tried to let me sleep in.  And, sleep in I did, until I was very rudely awakened.

Nathaniel was having one of his fits.  He was mad at the world and would not settle down.  Eventually, my husband sent him up to his room to cool down, which usually works after a few minutes of ranting and raving.  Unfortunately, it was that angry outburst in his room that woke me from my slumber.  I don't know anyone in their right mind who appreciates coming to consciousness from a much needed rest to a loud angry screaming rant from a strong-willed Autistic 5 year old.

The day actually went pretty well, though, and I was easily able to get past the rude awakening.  I played with the kids, read to them, and served pizza for lunch.  I kept them off the computer for most of the day and they enjoyed using their imagination to play as pirates on the high seas looking for buried treasure.  An upside to that was the finding of the beloved VCR remote in the cushions of the couch.  Finally, the kids could watch their programs in English again as the remote had somehow caused all their shows to be in Spanish.  I must admit, I had actually enjoyed watching them in Spanish as they were starting to get some of the words.  I couldn't help laughing when Nathaniel chanted, "not a rocking horse" instead of "nada rapido," which means, "swim faster."

Then something happened that caused my dear, patient, beloved husband to wonder who took over my body.  We were cleaning house and Nathaniel was cleaning the downstairs bathroom when Richard asked me to stop and discuss something for a few minutes.  Somewhere in the discussion, I told Nathaniel to turn of the water in the sink.  He did...and turned it back on a couple minutes later.  When we finished our discussion, I went into the bathroom to check on how he was doing.  Warning:  the following contains an explosion of epic proportions.

Barefoot, I stepped onto the carpet, which was soaking wet.  I wasn't happy, but I figured it wasn't that bad...until I noticed it was a mini puddle..on the carpet.  I opened the cabinet door to find the wood soaking wet, along with the toilet paper, the towels, and the other items in there.  As I started pulling them out, I saw the particle board coming apart as I lifted the towels from their positions, and I saw the bubbles separating the wood.  That did it for me.  I'm not sure why and I'm not sure how, but that just hit the button that had been exposed somewhere along the line.

I called my love to the bathroom and told him, a little too serenely, like the eye in the middle of a hurricane, that we were going to have to replace the particle board at the bottom of the sink and probably the carpet, as well.  Not so calmly, I began to show my frustration as I told him there was no way I can sit and talk when the kids are cleaning because I have to keep an eye on them.  Angrily, I began pulling everything else out of the bottom cabinet and tossing it away, explaining that when the kids are home I can't do anything but sit and watch them every second of the day because they will destroy the house if I don't.  Then, the hurricane itself came in full fury.

I suddenly got so angry that I was yelling.  I'm not proud of it, but that's what happened.  I was so frustrated about the mess.  The bathroom was 5 minutes away from being clean and checked off the list and now it was in worse shape than it had been in months because of the damage that had been done.  How was I supposed to get the house in working order when it falls apart at the seams if I take my eyes off the kids for 5 minutes?

Nathaniel's room has 2 holes in it from banging things in the wall, as well as peeled paint off the walls that were covered just a year ago.  The girls' room has the writing on the wall, the halls have ink stains on the walls, in the dining room lies Sajak who still has not been put to rest several months after the kids broke him for the third and final time, and the laundry room has about 10 loads that need to be washed.  Everything around me felt like it was coming apart.

I suddenly got blindly furious at myself.  I told Richard that everything I touched turned bad.  The house has gone downhill since I moved in, he's been down a lot lately, the kids aren't even fully potty-trained, 3 of them have Autistic issues, I can't cook well, the house is a wreck, and I can't keep clean clothes in the closet.  I wanted to go hide under a rock because I felt like nothing I did amounted to any good.

He tried to make me feel better, poor man.  He asked me about the choir...I did good there.  I told him I felt like a hypocrite sometimes singing because I get frustrated here too often and can't get things straightened.  He mentioned my writing.  I told him half of it was a lie, 'cause I didn't always feel happy go lucky.  He told me that it made me feel better and put things in perspective.  I had nothing to say.  He said that, yes, when I start writing, I'm almost ranting in the beginning with frustration, but by time I'm done I can see things more clearly and with understanding.  I glared at him.

And I said nothing.

He's right.  Sometimes I need to just sit and think about what has gone on during the day, frustrated or not, and just let it all out.  Eventually, somehow, I begin to see the worth in it.  I see everything that has gone wrong and then the right just starts peeking through, undeniably.

Yes, I've got my problems with my own insecurities, but I have a husband who truly does love me beyond all reason.  Our children have developmental issues; but they are trying to help and they are full of love.  Yes, the house isn't where I want it to be, but it has come a long way the last few months.  Yes, there are 10 loads of laundry that need to be done; but there are 3 that just need to be put away.  Yes, Nathaniel's wall has paint he's peeled off of it, but he's not hitting his head against it anymore, either.  Yes, the particle board in the bathroom sink needs to be replaced now; but the carpet will be fine, thanks to a dehumidifier Richard bought when Nyssa flooded us a few years ago.  Yes, we are tired, but we have each other and love each other deeply.  Yes, I'm not a great cook, but the kids eat pretty healthily.  Besides, Richard loves to cook.  He is my match in every way, and I don't deserve him.  But he's mine, just the same.  Oh the wonder of it all!  How blessed I am!

Friday, November 12, 2010

Specials

My children love to watch a certain movie:  The Incredibles.  They marvel at the superheroes and pretend we are the Parr family, attempting to live regular lives in the middle of having to overcome supervillain antics and other adversities.  They say we are a family of specials!  Benjamin wants to be Dash, running on water.  Nyssa is Violet, who invisibly works behind the scenes, and Nathaniel is Mr. Incredible, strong beyond reason and indestructible.

I'd like to introduce our family to you, beginning with the most loving patriarch I have ever known.  Richard is an ubergenius when it comes to mathematics and computers.  He is the logical problem solver with a heart of gold.  He senses when things are not quite right and does his best to make everything better.  He carries the weight of the family and holds us up under circumstances that would crush others.

Then there is me.  It's mind-boggling to think that we have been married 7 1/2 years now.  I spent most of the first 4 year pregnant.  I had 4 children born in the span of 5 years and 2 months.  I have the literal stretch marks to prove it.  Some days, though, I find myself stretched beyond my limits and yet being stretched further, amazingly, without snapping in two.

Nyssa is precociously intellectual.  She loves people, but doesn't always know the right way to interact with them.  She is socially immature but a genius at getting her siblings to do something while she sits invisibly on the sidelines.  When they get caught, she is nowhere around and yet we know she manages to pull the strings without being seen.

Nathaniel seems to be somewhat like Frozone.  He can appear cold as ice, but inside he's all mush.  He gets frustrated easily when he is not able to communicate with us effectively.  He gets angry and pouts when he doesn't understand what we are trying to say to him.  The Autism causes a barrier of sorts that he is unable to break.  But we work on going around it instead of tearing it down.

Benjamin is our blonde, green-eyed wonder.  He wants to be free to have fun without responsibilities.  He likes to wander around at night when he thinks we can't see him and hide behind the chair and just listen to us.  He is four years old and likes everything to be in its proper place before he goes to bed or else he can't sleep.

Gabriela is our own version of baby Jack Jack.  She can keep up with all of us and can get into things so quickly it's like she's able to teleport from one spot to another.  She'll be beside me one minute in the kitchen and the next she's upstairs in the boy's room chewing on a toy.

The thing is, most of our children have special needs.  They have Autistic mannerisms that make them stick out like a sore thumb at times, but yet they are also full of wonder and so much love.  Yes, they have special needs, but I think every one does in one shape or another.  Theirs are just more obvious than the average Joe's. 

I think Helen Parr said it best when she was talking to Dash, though in a way she may not have originally intended.  She said, "everyone's special."  Dash took it as to mean that "that means nobody is."  But that's not exactly true, because we all have our strengths.  We all have our weaknesses.  We all have those special aspects about us that make us unique, whether it is flapping our hands, repeating movie lines as our means of communications, or just being a great giver or being a huggy person.  All these things are special about us.  We all have special needs, but we are also all very, very special.

Thursday, November 11, 2010

Alarm Clocks

Life is full of deadlines.  We have to be at school at a certain time.  We have to have our homework finished by the next morning.  We have college reports that need to be typed and turned in by a certain date.  We have a job that requires punctuality.  Why are we so obsessed with time?

I awoke this morning at 5:30 and reset my alarm for an extra 15 minutes of sleep.  I don't have one of those electronic alarms with a snooze button, though. I have an old fashioned alarm clock in which you have to turn the alarm dial to the correct time and then push the button once again to set it.  The funny thing about that is that I actually had to be awake enough to see what I was doing in order to avoid oversleeping.  Then, by time I placed the clock back on the desk and went back to sleep, I only had about 8 minutes left.

Why didn't I just get up the first time?  When I did wake up just a few minutes later, I felt cheated out of the sleep I could have gotten.  I should have either just decided to get out of bed when the alarm first went off or set the clock for 15 minutes later to begin with.  Either way, I would have felt better upon waking than I did by going back to bed.

I spent the next hour and 15 minutes getting my two older ones awake enough to get dressed and ready for school, while making sure I was decent enough to go outside to the bus with them.  Honestly speaking, it meant putting a coat on over my pajamas and slipping into a pair of flats while I sent them on their merry little ways.  I then went back inside to "start" my day.

I know I live in a society in which "now" means "right this second," or better yet, "yesterday."  However, many places I have been to have a different viewpoint...later, tomorrow God willing....both of these mean "whenever we get around to it hopefully."  If I get caught up in either one of them to an extreme degree, dangerous things can happen.  I have to strike a balance.  I need to help my young ones get ready by a certain time in the morning.  I need to find time to cook so the family doesn't go hungry.  I need to have clean clothes for everyone for the day.  I need to spend quality time with my husband and children.  But I don't have to rake the leaves up this week because they are still falling off the trees.

In a sense I think we are all aware of this clock ticking away inside each of us.  Our alarm may go off sooner than we want it to; we may or may not have the opportunity to press the snooze button and take another 15 minutes or so.  But sometimes we need to feel the urgency and wake up to everything going on around us.  What time we do have is precious and if we waste it away just waiting for the bell to ring, we will find ourselves even more exhausted with no accomplishments to show for the chances we have been given.  We are not here forever, so we should spend what time we have wisely so that we can look back and be satisfied, content, with our lives.

I am reminded of a movie that came out when I was in college, Dead Poets Society.  Robin Williams played a charismatic teacher who wanted to encourage his students to learn, love, and to live lives to the fullest.  There was a scene in which he pretends to be Walt Whitman.  He tells the boys to lean in and listen closely as he whispers, "Carpe.  Carpe Diem.   Seize the day!"  I think I'll try that tomorrow.  I'm setting my alarm and, God willing, I am going to wake up and seize every moment, every opportunity that I am given.  I want to be a good steward of my time.  Time is precious.  It is a gift, not to be squandered, but to be cherished and used in a fashion where I can lay down my head at night on a pillow and be at peace for the way I have spent this precious present.

Monday, November 8, 2010

Aspirations

What are your aspirations?  What do you aspire to become?  What inspires you?  These are but a handful of the questions I have asked myself of late.  Each question, in and of itself, is a good one to ask, but I have found a common thought behind them all.

Three of my four children suffered from seizures as very young infants.  When my Nyssa was 3 days old, she stopped breathing, not once, but numerous times a day, to the point where she sometimes turned blue.  For the first 3 months of her life, I hardly slept at all because I was constantly having to give her infant CPR.  My pediatrician at the time never witnessed these episodes, so she chalked it up to me being an overly protective mother.

We had no such issues with Nathaniel, but by time Benjamin was born, I had learned to go with my gut feelings regarding the lives of my precious children.  The day after he came home from the hospital, he started doing the same thing Nyssa had done.  He would slowly turn his head to the side, his arms would go up at the elbow, and he would freeze.  He wouldn't blink.  He wouldn't move.  He wouldn't breathe.  Once again, I fell into the life-saving maneuvers as before.  The third time he stopped breathing, mere hours after his first episode, I called the pediatrician and told her we were taking him to the ER at the children's hospital.  We sat in the waiting room as time dragged on until someone called his name.  The doctor listened to my concerns, examined him, and gave him a clean bill of health.  Having witnessed nothing himself, he turned to walk out the door.  At that moment, I pointed to Benjamin's little body and said, "There!  Look!"

When the doctor saw my baby, his entire mannerism changed from a slow calm to a rapid fire questioning and professionalism.  How often had this happened?  Did it look like this every time?  This was not simply a case of an infant who skipped a breath (a common occurrence).  Benjamin was having a frozen, silent seizure.  The doctor picked him up and carried my 56 hour old son into the closest trauma room.

The next four hours seemed like an eternity as they tried to run tests in between seizures, for they were coming so close together.  I had never heard the terms, "Brady," or "tachycardia," but I became quite familiar with them over the next few hours.  This night I heard them over and over and over again.  It got so they had to put my baby into an induced coma and put a ventilator tube down his throat so they could run tests on him.  They took blood from everywhere, ran a spinal tap, and took blood again because it congealed before they could get it to the labs.

I spent the next 10 postpartum days in a chair fold-out bed in the PICU, the Pediatric Intensive Care Unit, while the doctors tried to discover what was wrong with my son.  I pumped milk for him and sang to my infant, holding his hand while he slumbered, hooked up to heart monitors and breathing tubes as he lay ever so still in his incubator crib.  The first 7 were the longest of my life.  I couldn't move him, couldn't hold him; as far as I could tell, because of his induced sleep, he had no idea I was near.  All I could do was call the nurse when one of his machines beeped.

90 finger pricks and 70 toe pricks later, after an EEG, it was determined that my son suffered from BFNC, benign familial neonatal convulsions.  At the same time, we received a post-diagnosis for Nyssa, who it was now known to have had BINC, benign idiosyncratic neonatal convulsions, as the first in her siblings to have it.  Simply put, they had seizures that were caused by the lack of potassium ion connections in the right frontal cortex of the brain with proteins that weren't working right.  That part had not developed in a normal fashion.  It was a diagnosis that most neurologists didn't even know existed when Nyssa was a baby, so far had medicine advancement come in 27 months.

The next 3 days went by a little faster, as he was finally able to be awakened.  Once he was eating 70cc's of breast milk a day we were allowed to bring our miracle baby home.  Along with him came a heart-oxygen monitor and two daily doses of phenobarbital.  During this time, we learned that at least 86% of infants that die from SIDS probably die from this very underdeveloped portion of the brain.  It took 3 months for his brain to develop the new neurological pathways that told his body how to function.  After another EEG in January showed no more seizure activity, he was weaned off the medication.

When Gabriela's first seizure hit, we took her downtown immediately.  They ran all the tests on her, but since the seizures weren't as closely together as Benjamin's, they did not have to induce coma.  And, since we already had a history, she came home with the same medication 3 days later, after assessing it was the same problem.

My children had nothing to aspire to.  The part of their brain that inspired them to breathe was malfunctioned for a while.  It took time, patience, and vigilance to keep them alive until their brains kicked in and gave the natural commands.

For a while, I too had lost my aspirations, my dreams, and had fallen into the monotony of just being.  Take it from someone who's been there, that is existing, not living.  Sometimes we think that what inspires us is one thing, like the potassium ion connections in the brain.  But then something doesn't work the way we think it should, so we just stop; we freeze.  We have to wait until something new, something better, something hard-wired just for us kicks in and gives us an aspiration.  When that happens, we don't have to think about breathing, we just do, automatically.

Sunday, November 7, 2010

Just Being There

It's often hard to sit back while people close to us are suffering.  We don't know what to do and we wish that we could take all their pain and discomfort away.  We may feel like we are not doing any good by just sitting on the sidelines while they endure what they must.

Friday night, I was awakened around 1 in the morning to the cries of my youngest child.  She was scared, sad, and sick.  She awoke from her slumber to throwing up in her crib, a rare occurrence, to be certain.  My husband was with her, had cleaned her up and was trying to console her, but she was miserable and wanted nobody but Mommy.  I took her in my arms and went downstairs with her so we wouldn't disturb the rest of the house.

The rest of the night we spent together, just Gabriela and I, curled up in my little white Lazy Boy recliner.  We held onto one another as the hours dragged along.  I changed her clothes several times and used a few towels until I finally decided to just put a towel around her until morning.  She was hot, miserable, and thirsty but couldn't keep anything down. 

I gave her some children's electrolyte drink to sip every so often, but to no avail.  No sooner had she closed her eyes after swallowing a few mouthfuls than it came right back up.  That's how we spent the hours:  sip, throw up, clean, fall asleep for a couple minutes, repeat.  It really was one of the longest nights of my life.  Only once before have I felt so helpless...and that was when Benjamin was in the hospital when he was a baby.

There we sat, through the dark hours in the family room.  As she tried to sleep between fits of sickness, her little hands would cling to my shirt.  When she was awakened by her upset tummy, she would look at me so pitifully with eyes that seemed to say, "Make this go away, please?  I don't understand."  She started looking pale and lethargic.  She was exhausted from all her body had gone through.  I made up my mind that I would take her to the emergency center in the morning if she didn't start holding down fluids.

Around 7:15 I took her up to the bed with me as I was worried I'd drop her over the side of the chair in my own weariness.  There we lay, with two towels, waking and sleeping in spurts of sickness.  Shortly thereafter, Richard took over her care so I could get a little rest.  By noon, her fever had broken and she was sleeping restfully for the first time since she first felt bad.  She had gotten past the worst of it.  She was starting to hold down the Pedialyte.

As a mother, I wanted to be able to cure my daughter, but I couldn't.  I was helpless to do anything but to hold her, whisper lovingly to her, clean her up, and let her know she wasn't alone.  I couldn't wave a magic wand and take away her pain.  I couldn't just make her feel better.  And even though I felt helpless to do anything, she was comforted.

When someone we love is hurting, we don't always have to be able to solve the problem.  We don't always have to take it away.  Sometimes we can't.  But perhaps the only thing we have to do is to let them know we are there.  We help them clean up the mess and wipe them off.  We try to sustain them with little droplets of love.  We whisper words of encouragement and we hold them.  We let them know they are not alone.  And sometimes, even in the midst of all their trouble, they get a few minutes of peaceful sleep in the midst of the storm.

Friday, November 5, 2010

Piano Lessons

Every person is unique, an individual.  There are no two people in this entire world who are alike in every single way, not even identical twins.  We all have something that sets us apart from one another.  We all have our own personalities - in case you haven't guessed yet, I am a sanguine.   We all have different learning styes.  And sometimes all these different personalities and styles can clash like a two year old banging together a set of large orchestra cymbals with no adult in sight.

My oldest two children, whom I lovingly call N&N, are taking piano lessons.  They do not, however, take the same lessons in the same way, because they are different.  They don't learn the same way.  Up until recently, they were being taught similar, but my daughter, precious child that she is, was very resistant about her lessons.  It seems she is very much like her mother in that she rarely does things the conventional way.  Thankfully, for us, my children have a very experienced teacher who is loving and realizes the need to individualize their classes.

You see, Nyssa wasn't exactly sweet about her piano lessons, I am sorry to say.  She wanted to know instantly how to play and didn't want to take time to sit and learn pentascales and finger positioning.  No, she wanted to just pound out her songs in her own way.  But her teacher did not give up on her.  She knew from the way Nyssa loved playing the keys on the piano that Nyssa really does want to know how to play, deep down inside, and that she needs the consistency at working at something.  If something doesn't come to Nyssa as quickly as she thinks it should, she gives up too quickly.  As a whole, she also gets distracted too easily and has a hard time focusing; and when that happens, she isn't the easiest person in the world to deal with.

So, the wise woman changed tactics with my daughter.  She gave me a CD for my children to listen to throughout the day.  She assigns Nyssa themes for which she can compose her original songs.  She has Nyssa just sit and play notes on the piano and then describe what her mind's eye sees as she plays.  I am very pleased to say that she is starting to get through to Nyssa. 

Nyssa is starting to warm up to this style.  Though she still has to utilize her pentascales in her songs, and she has to use correct hand positioning, she is enjoying the freedom to create.  Just the other day, she played a song for me about ballerinas dancing.  First, they danced all together in a jumble of notes.  Then they started dancing sadly, so she played low, somber notes.  As another set of ballerinas danced happily, her fingers lilted joyously in the higher register.  Then they warred between mourning and gladness until they met in a sweet melodic tune in the middle for her finale'.  It was a joy to listen to as she described it to me, and I was actually surprised how she was beginning to connect emotions with different octives.  She was, for the first time in a while, actually enjoying her practice time.  By time she was done, her face was all aglow.

Her teacher saw Nyssa's need to continue in structure, even if it is something she doesn't think she likes to do.  But she also had the wisdom and the ability to change tactics when my daughter was seemingly getting nowhere.  She didn't give up on my daughter; she adjusted the lessons to a better style for my daughter without compromising on the basics.  She still has to go over all the basic rules, notes, and such during her lesson, but she also has that free time in there to show her creativity.


I think we can all be like Nyssa.  We all have our own personalities, our own styles, our own melodies that we play, and sometimes they may clash with one another.  But if we can recognize our differences and enjoy that part which makes one another unique, we may find ourselves blending much better than we thought we could.  I'm reminded of the Donny and Marie Osmond show when I was young.  "I'm a little bit of country," "and I'm a little rock and roll..." and yet they made the song work in its own way.  We don't have to be all made of the same mold, we don't want to be; we weren't designed to be.  We were designed not to copy, but to complement one another.  And in order to do that, sometimes we just have to stop.  Sometimes we have to be like Nyssa's teacher.  Sometime we just have to listen.  Then we will know how best to help one another.  Isn't that one of the reasons we're here in the first place?

Wednesday, November 3, 2010

The Game is Afoot, Dr. Watson!

I wish things were always as black and white as people make them out to be, because they should be.  Then thing about that is that people are inherently flawed and are not always able to see things clearly.  I know I am ever so guilty of that sometimes to the point of being blinded to what may be directly in front of me.  I want to believe the best of everyone, I want to find out what's really going on, but sometimes it's not that easy.

Take, for instance, yesterday morning.  I think it was yesterday, anyway.  I got up and went to Nyssa's room to get her ready for school.  She was not in her bed.  Rather, she was laying on the floor in her room with her sister.  This is the same sister whom I had put in her own crib mere hours before.  The crib rail was up, and she's not big enough to crawl out of it, so there was only one answer with a couple possibilities.  Someone else had taken Gabriela out of her crib.  Who was it?

I turned into Nancy Drew and questioned the prime suspect:  my oldest child.  Nyssa's immediate reaction was to play the blame game card.  She said that one of the boys took the baby out of the crib.  Realizing that under normal circumstances this was a possibility of events, I considered it.  I have seen Benjamin trying to do that very action before.  However, when Gabriela was last seen in her crib, Benjamin was already asleep, so that was not the truth.  So was Nathaniel, for that matter.  Upon having all the facts in that situation, I was able to determine that Nyssa was lying to me and that she had taken it upon herself to get Gabriela down.  Confronted with the facts, Nyssa admitted what she had done.  Case closed.

Not all cases are that air tight, however.  Sometimes you look at a situation, things don't add up, and you don't have all the facts to determine the truth and it takes a while before all the evidence surfaces, if, in fact, it ever does.  The next conundrum occurred a mere few minutes later.

When I walked into the boys' room to wake Nathaniel, I smelled the problem immediately.  Then I saw it.  If you have read much of what I have written before, you can probably guess what I found next, as it seems to be a recurring theme.  Poop was spread out on the carpet.  A not so clean pull up was next to it.

Donning my cap once again, I looked to see if I could instantly find the culprit.  Who had taken off their pull-up?  Sigh.  Evidence here was covered up as whoever had taken it off had also put on another.  I decided I'd have to wait a little while to figure out the truth as I had to get Nathaniel and Nyssa ready for school.

When he was awake enough to be able to answer some easy questions, Nathaniel told me that Benjamin had put the poop on the floor.  I knew what I had to do.  As gross as it sounds, I smelled Nathaniel's hands.  I should have known better, because he always touches poop regardless if he's on the potty chair or in his room, so all that did was prove he had touched the poop at some point.  His sensory integration issues made certain of that.  With more immediate concerns at hand, I got him cleaned up and ready for school and got N&N on their respective buses.

Part two of the investigation happened when Benjamin awoke.  I asked him about the poop and he said it was Nathaniel's.  Hmm... Two boys were telling apparently two different stories.  I wasn't in their room when it happened, and they often wake each other up in the middle of the night, so I couldn't instantly determine the truth.  So, I did what I had to do.  I smelled Benjamin's hands.  Inhale.... Cough.  Yuck!  I couldn't see it, but I could definitely smell the offensive odor.

So now what?  Both boys had something to do with it.  But what really happened?  It took me all morning to discover the truth, for one fact had been left out.  To whom did it belong?  The case began to make sense as this discovery came to light.  Nathaniel had taken off the pull-up and Benjamin had spread the poop.  Sigh.  Alas!  They were both guilty of doing something.  Nathaniel was supposed to take it off and put it in his trashcan, which he didn't do.  That neglect allowed his brother to step in and be creative, for lack of a better term.  That particular use of medium, however, is strictly prohibited in our household, thank you very much, as they have both been told on numerous occasions.

In a sense, they were partners in crime.  Nathaniel left it there to be handled, and Benjamin did the deed.  While Nathaniel was not guilty of the actual act, he was guilty of leaving it in a place where it could be abused.  But who really needed punishment, Nathaniel?  Benjamin?  Both?  That is hard to answer because you can't blame one for someone else's actions...or can you?  That is my conundrum.

In the end, we are all responsible for our own actions.  We are responsible for doing what is right, such as putting that pull up in the trashcan.  And we have the choice with what we do when someone else leaves a situation in front of our eyes.  Do we just leave it alone, just put it in the trash where it belongs, or just get in the middle of the mess and make it bigger?

We never know how our actions may affect someone else.  Something we do can actually cause someone to be tempted to do something wrong.  While we are each responsible for what we do, I think we should also take responsibility for our actions to do our best not to cause someone else to stumble.  Because when that happens, it stinks!  We both lose, and sometimes others not even remotely involved in the situation get pulled in and are forced to take some action, like I had to take a carpet shampooer to the boys' carpet.