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Thursday, March 31, 2011

This is ME

This is not a cry for help. Don't read anything into it.... but I'm feeling very overwhelmed right at this very moment.  It is spring - the end of school ... and there are just so many things going on. 
I feel like I'm being pulled in a million directions. 
On any given day -
I don't spend enough time with the twins. When I say not enough time... we spend tons of time with them... but Alexander's needs are so much greater. It is a triage center. Alexander still needs fed. Each feeding takes between 1/2 and 1 hour.  Alexander needs put in the stander, exercised, played with, stimulated.... and yes - we try to do these things all together - but it doesn't always work.
I usually have about 3-6 phone calls about Alexander I'm making or waiting to hear from.  He takes 7 medications daily ... these medications need refilled, change in dosage, etc. We also order from a medical supply company (same deal.) We have in home nursing care. Calls to the Health Insurance Company. Fights with the Health Insurance Companies.
I also take care of our bills .... enough said on that topic.
Work is just crazy. Between end of the year - state testing - and reduced funding. Pressure is everywhere. (I love my job). But it can be high pressure sometimes.
And Ray does a ton. Much more than most husbands... but I feel like my brain can never turn off. 
Some people may question why I'm writing a blog if I feel so overwhelmed.
Because this is the ONE thing I do for myself.
The ONE thing. 
 Every other ounce of me is taking care of someone else.
I feel like a tree that has been struck by Lightning. 
Don't worry... a tree that is split is not dead... It merely needs pruned....

Wednesday, March 30, 2011

Opinionated... Varsity level

My good friend calls me "Varsity Opinionated."  So here it is.  There are times in a person's life when circumstances are out of our control. (Well.... all the time) - but what I mean is major life changes.  Birth, Death, Weddings, Divorce, Accidents, Illnesses, Special Needs... the list goes on - but these are the most prevalent I believe.  Here are some things well meaning people say.  You should all know - these are inappropriate responses to situations in this "Varsity Opinionated" person's perspective.

I know what you are going through -  (um... no you don't)  unless you've actually done the exact same thing in the exact same way at the exact same time... you don't

I understand - No you don't.  unless you've actually done the exact same thing in the exact same way at the exact same time... you don't

Everything happens for a reasonAlthough this statement is true... Sometimes these are not seen as words of comfort. Better to err on the side of caution.

Maybe this is for the best - see above notation.

Any statement that puts your needs first - (I want to come see you. I want to ....) Totally inappropriate. Another person's struggles are not about you.  Another person's birth is not about you.  (maybe they want some private time.)

Any time you try to "One Up" the story with some other story - When people come to you for support, the last thing they want to hear about is your "bigger and better" story. 

Gossip  - No one wants to hear about how they were the topic of your latest phone conversation.

Doing these things could damage a relationship beyond repair.

Now... there are things you Should Do or Say....

I'm here for you. - Offering up those simple words can be just the right thing. 

How can I help you? - Sometimes this is enough. Sometimes you need to offer suggestions.  Can I bring dinner by? Can I stop at the store for you?  Would you like some company? Would you like some candy? Ice cream?

A care basket or card. - Do not undervalue the effects of a card.  No one uses cards anymore. We e-mail. We facebook. We ... whatever. We don't hand write little notes and stick them in some one's mailbox.  We don't do care boxes.  I once gave a box of hard candy to a friend I knew was trying to quit smoking during a rough time. Do you know what it cost me? $5.00  You know what it gave that friend? Support.

Remember that life changing events change a life - Things don't automatically go back to normal in a day or a week.  Sometimes it takes a long time to grieve or celebrate something.  Sometimes people find themselves talking about that life changing event even a year or two later.  Allow them to have these moments.

Be available - You never know when your words or actions might be needed.  If you see a friend have a major personality change... like slip into a depression - be observant.  That doesn't mean read extra meanings into everything they say, but a true friend will keep an eye out.  If you do suspect a depression or personality change... choose your words carefully.  I cannot emphasize this enough.  Write down what you want to say.  Practice.  And no matter what - make sure the person you are supporting knows you are always available. 

Remember.... This is just one set of my very Varsity Opinions 

Tuesday, March 29, 2011

Wordless Wednesday - Pappys


My personal hero....
From Left to Right: Me, my brother, PAPPY, and Grandma

I was blessed with 2 Pappys (the other one I could not find a picture of us together at this very moment)
My dream for my children is that they grow up to idolize their Pappys as I grew to idolize mine.
Some people are meant to be remembered as Perfect....

Represent your Job, Represent your Community, Represent yourself....

I feel an obligation to post this because my opinion on this topic has taken a 180 turn in the last 24 hours.

As teachers, we are encouraged to "watch ourselves." 
*We are discouraged from FB friending students. (to be honest - this rule of thumb I follow.) 
*We are discouraged from FB friending former students. (This suggestion I have a harder time following - when can former students become "adults?")
*We are discouraged from having too many social media outlets - they can lead to "problems."  This is one thing most school districts and unions agree on.....

Up until 24 hours ago - I felt this was wrong.  I felt that I should be able to have a life separate from teaching.  I felt I should be able to choose whom to be friends with and if I wanted to say something outside the classroom.... I should be able to do this. Now..... I exercised caution ... because I love my job.

However.... I now change my position.  I now believe I should exercise caution when writing... not because anyone has told me to -but I represent people when I am out in cyber world.  BECAUSE.....

I am always representing something.  I do represent my work.  I represent all the students I teach.  I represent my bosses who trust me to do a good job. I represent the parents who want to know what I am filling their child's mind with. I represent my church.  I represent people who say they are friends with me - either through real life or facebook.  I represent people who recommend this blog to others - their reputations are all on the line with my words. 

I represent myself.  These words don't go away. Once in cyber - space... always in cyber - space.  I represent myself.  I represent my beliefs. My values.

Monday, March 28, 2011

Advice for my children

Dear Andrew, Addison, and Alexander,

Last night when I could not sleep... I was thinking of you - as always. And I began to compose this list of the 3 most important things I think you should know.  In 5 years, it is possible that my perception of life could have changed and I will have to update this, but if I were to leave you advice today .... it would be this.

1. The best thing you can ever be is a good person.  I know this sounds juvenile and very simplistic.  The thing is .... what better can you do with your life than just be kind to others?  Be the person others gravitate to because of that internal light that shines outward.  Be a good friend to others.  Be kind, be generous, be faithful, be... good.  Please remember this - genuine kindness is rewarded many times over.  It can be a testimony to your life. It can be a legacy you pass down to your children.  What better can someone say about you than I was proud to know you... you were a good person?

2.  Believe in something... and fight for it.  It is ok to see the world in shades of grey.  Often the best people are those who can view life from many angles.  But in the end... do not allow society to rule your life.  Educate yourself on topics and create opinions.  Your opinions.  Although you should always keep your mind open to other's opinions... stand up for what you believe in.  Be strong in your values.  Your thoughts are important.  Be a protester.  Be a revolutionary.  Be a visionary.  Be an opinionated person. If you remember piece of advice #1 - then you will find a way to state your opinion in a kind way.  I don't care what it is that you believe in.... only that you know what you believe in... and stand up for it.

3.  Dream Big and Reach for the Stars.  You are capable of anything. You can do anything.  A mind set can get you further in life than any natural talents.  A door is never completely closed... There is always a way - you just need to find it.  If you want something bad enough - don't give up. Find a way.  I was lucky enough to live my dream - being a teacher.  I have wanted to be a teacher as long as I can remember.  I have other dreams... floating around in my head. Those dreams may be realized before you are old enough to read this - they may not... but they will be realized.  You can be or do anything you want to - so reach for the stars and don't stop until you catch one.

Probably the most important - thus no for you to remain faithful to God. At times it may be hard to take a leap of faith... and that is a journey you must travel by your own will.  Know that God has a plan for all of us.  When this life is over - I will rejoice in spending eternity in Heaven together.  Love, Mommy

Sunday, March 27, 2011

Wolf Hirschhorn Friends (warning - picture heavy)

I bet you wonder what it is like.  When all these families get together - pulled together by this single syndrome. Here's a peak into our world.

There are about 8 families who are in the area and could come at any time.  Most of those families are "families of 5" believe it or not.  Most of the children are elementary age and younger - and almost all of us - our child with WHS is the youngest.  What this looks like is a lot of 2 (my twins) - 8 year olds trying not to step on WHS beauties ages 1(Alexander) - 6 (still very very small).  The development of children with WHS is delayed (as if you didn't know that) - so the older kids have to be careful of the 9 lb one year old.  It can also be tricky with the equipment people need.  Kangaroo pumps, other pumps, things to help children sit, swings, bumbo, etc.... tend to clutter even the largest rooms!

But there is more.  We are not just a group of 40 people flung together ... dreading our next visit.  We are not unified by this syndrome.  We were introduced to each other because of the syndrome.  We are friends.  In the kitchen, there is a "bro-mance" going on between several of the husbands.  There are pods of children playing in every space of the house.  There are diaper bags flung everywhere - and I swear... every 5 minutes someone is changing diaper.  The bigger boys are playing with dinosaurs and airplanes.  The smaller boys are trying to get into everything the bigger boys are into.  Someone's child is always whining.  The majority of the children are laughing.  And there are moms ... WHS moms with WHS kids.  They are gathered in little groups that grow into large groups and eventually break off into little groups again.  They hug. Chatter. Gossip. Hug. Ask Questions. Answer Questions. Show off tricks. and .... support each other.

This is where the abnormal is normal.  We discuss break though seizures, Keppra, Topomax, Ketogenic Diet,
Diastat,  our last hospital stays, physical therapy, occupational therapy, Kenesio Taping, Standers, Walkers, and Orthopedics like most people discuss food.  What we like, what we don't like.... it is all so normal....

My life is fairly normal. I try.... I really do try to keep it as normal as possible for everyone.  There are people who do it better - people who have a harder time with it... - but the truth of the matter is: our lives are not really normal.  It doesn't matter how many ways you cut it... They aren't. My friends are so supportive.  They listen, they rejoice in Alexander's triumphs... but I know the seizures and stuff scare the crap out of them. 

But this is a different kind of normal.  This is a normal where we all know that  trips to the hospital happen.  And while we all pray when a trip is made.... we don't stop.  We don't talk about each other with pity in our voices.  We feel compassion for each other when necessary - but not pity.  There is a huge difference. 

To just be normal - because we've all had these common experiences. Yesterday, I said my heart was happy and it was.  If only I could bottle all the joy from yesterday .... I could ride that wave forever.

Here are some pictures of our get together. 

Haley and her favorite toy.  She is SO beautiful.
Alexander and Mia
Kaylee.... in the arms of her Momma
She is a total Rock Star
Mia.  Somewhere I think there is a caption on her picture that says Innocence.... Is that not the truth or what?!
Tanner - "Alex... If you want to hang out .. you better eat so you can get as big as me!"
Because I'm THIS BIG!!!
Addison showing Alexander how to play a new toy
Alexander checking out Tanner's cool toys
Princess Izzy
Addison's New BFF
Lauren supervising 2 stinkers (AKA Norrah and Andrew)
Dulcie and Haley.  Meeting them was like hanging out with old friends.
Addison and Ray actually had an argument over weather or not this was a helicopter or an airplane.
I had to trick Addison just to get a shot of her looking at me. But she does love Izzy!
Norrah - I have a similar picture of Andrew doing the same thing. They really are 2 peas in a pod
Jess with some pink :)
My BFF Norrah
This might become my new favorite picture. 
Missing: Chrissy/Mia, Jen/Karly, and Hannah/Riley `
Soul Sisters
Alexander and Kaylee
Haley and Norrah
Norrah and Alexander

It is a wonderful life. I love our family. I love our WHS family. "The Life that's Chosen Me...."

Saturday, March 26, 2011

We are STANDING ... and rewarding negative behavior!

Things here have been crazy busy.  This week just seems like one day runs into the next day - and all the while I am counting the minutes until tomorrow - we are driving about 2 hours to get together with some other Wolf Hirschhorn families.  It is so unbelievably nice to talk to other people about things that we go through as a family.  Speaking of - lets show off our standing skills:
We finally were able to see the rep and order a bronco.

Here is Alexander showing off his skills
 The Bronco is the smallest stander available.  You must be 24 inches tall to fit it.  Alexander is 24' with his shoes on :)

 It does sort of look like a medieval torture machine, but he loves it..
 You can see the pride across his face!

Here he is standing up to the table to play with this little box toy. It is so AWESOME to watch. 
He is so proud of himself!

This is a poor quality picture I got of the twins playing with Alexander.  Although the picture didn't come out that great... the idea behind it is perfect.  They will all 3 play together. 
This is what I have waited for....
not 2 children playing and 1 child watching,
 but 3 children playing.

Alexander operates that thing like a champ. Here is the problem... yet another week of constant therapies around Alexander.  The people came to set up the Stander for Alexander.  They had to measure him and everything was so precise.  There are so many straps and his little body is so small.  It took a long time to get it adjusted to where it should be.  All this time ... spent on Alexander ... and not on the twins.
Needless to say they have been holy terrors.  They have kicked, bit, stood on, jumped off of, etc everything they are not supposed to do!!! It is crazy!!!!! Ray and I are really trying hard to balance the punishment with rewards. I really think they need some positive attention to get away from all the attention they are getting when they are in trouble.  We just need to make sure we are not rewarding their bad behavior. 

It is just a blip in the road of life.  We will look back on this and laugh. The key is to make sure this blip doesn't become a mountain.