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Wednesday, November 30, 2011

The Lists… things you never knew

I’ve decided to write to another Mama Kat’s writing prompt.  It is a bit of a tough one… I had to copy and paste it here to get all the wording right:

Five Things. List 5 things we don’t know about you, 5 things you’re knowledgeable about, 5 things you know nothing about, and 5 things you believe.

IMG_0676[1]Five things. … It sounds so simple, but – actually it is so tough.  I mean… what if I hit publish and then suddenly remember something different that should have been on that list?  What if there are not 5 things people don’t know about me? I mean… I’ve shared a lot.  And just today I was in awe of a blogger who revealed some things that I could not have put on the internet.  Do I reveal those things? eeek! So here goes… my lists of 5.

5 things you don’t know about me:

1.  I once rode to Florida in the bed of a pick-up truck.  Yes, the bed had a cap on it.  No, that still doesn’t make it quite legal.  In my defense…. it seemed like a brilliant plan at the time.  We put a futon mattress in the bed of the truck and 2 people drove while the others slept.  We were able to make an 18 hour drive strait through and feel like a million bucks when we got there.  We also had a blast on the way there.

2.  I am a psychologist / sociologist at heart.  I’ve worked in the social work field before.  I scored a perfect on those parts of my “teaching” tests.  I love the way the mind works.  The way people work.  I love arguing the other side.  I love sharing both sides of life… in the science of people.

3.  I know how to paint. As in… I’m actually pretty decent at it.  People (including myself) always laugh at my drawings – because I don’t take the time to make them good.  It is funnier and faster to just pretend you are terrible… but – I actually have pretty decent talent.  Some day I will dig up my old paintings / drawings and put something on here. Until then – you will just have to trust me.

4.  I love to bake.  I used to bake pies and cookies and cheesecakes and … pasta dishes and chicken cordon bleu from scratch. … when I was off work on maternity leave.  I enjoy it.  I enjoy making a mess and having a meal come out just right.  I enjoy finding a recipe and anticipating that first bite. Love it.

5.  I have a fear that deep down people will not like me.  I hate to go to parties alone (I end up acting desperate for a friend.) I sometimes obsess over what I said… did I say too much? too little? Was I too aloof? or to sociable?  Was I really funny? or just obnoxious?  I can drive myself crazy sometimes.  I’m better (a little) now… but usually because I have a kid with me.  How sad is that…. I use my kids as my “wingmen?” *sigh*

5 things I’m knowledgeable about:

1.  I know a lot more about WHS than any person ever should.  When Alexander was diagnosed, I did what I do best… learned.  I learned and continue to learn… how to care for him, how to help him, how to …. I would consider myself an expert in my son’s life with this syndrome.

2.  I know how to build things.  I actually think I’m “male” brained.  If it is broken, I can usually fix it.  I can usually find my way out of some lost situation, and I knew how to change the oil in a car before I could drive.  I’m pretty handy with a saw (yes… even a table saw), drill, and all those sort of “fix it” tools.  I actually like to build things and usually I’m the one who puts things together in our house.

3.  I know how to write.  Although… this is a passion I’ve only recently begun to indulge.  I was always good at writing papers.  I could whip up a research paper at a rate of about an hour a page in my hay day.  A persuasive paper? with no sources? a page in 10 minutes or less.  These blog posts take much more time, but they also require much more thought and care with my words.

4.  I know a lot about kids.  It turns out… I know more about babies than I thought I did.  A mothering instinct did exist in me (I thought it might not.)  I actually like small children.  (I didn’t used to.) I honestly like teenagers.  I sort of “get it.” I mean… growing up is rough.  I usually can figure out a scene and have basically a good relationship with most people age 18 and younger. (Older… maybe not.)

5.  I am knowledgeable about history.  I am a total history buff and love stories about Rasputin and Gandhi and the Louis *of France* – see the next list.  I like geeky things like the history channel and the Biography channel.  A great biography? – there is nothing like it.  I always said my dream in life was to be featured on A & E’s Biography Show… because that meant I did something special.

5 things I know nothing about:

1.  I do not know a foreign language.  I can’t memorize for the life of me.  I took 3 years of French and could not pass the test to get into basic French in college.  I was going to have to take “remedial” French … as if 3 years wasn’t remedial enough.  So…. foreign diplomat – gone.
2.  I don’t know anything about how to live in wealth.  There is this phenomenal book by Ruby Payne … and in that book she actually has 3 tests.  “Can you survive in Wealth?” “Can you survive in the Middle Class?” and “Can you survive in Poverty?” It turns out – I am strait up Middle Class… although, I could survive in poverty.  The skill set needed to survive in wealth escapes me – so when I hit Powerball or the big time, I will have to hire someone to help me.

3.  I know nothing about mechanical advantage.  I specifically put this here because… despite the efforts of many people to teach me the laws of physics (while I was in physics class and later in life) and specifically mechanical advantage – I do not get it.  The only real law I understand is * If you drop something on your foot – it will hurt.*  Other than that – I don’t understand it. And … to tell you the truth… I really don’t care.  So, yes. If I have to lift something heavy, I WILL have to call someone for help.

4.  I don’t know how to to rap.  And I sort of wish I did. (This probably could have gone under things you didn’t know about me also.) It could also be because I’m watching the Grammy reveal and it is a country / rap song performance… sort of weird.  But – I do practice “rapping” when I’m alone in the car and need to vent out some frustrations.

5.  I don’t know how to get rid of my stress. There – the serious part of this post.  I really don’t.  As soon as I figure it out – I’m going to let you all know. 

5 things I believe:

1. I believe in God.  I believe that he exists.  I believe that heaven exists.  I believe I will go there someday.  I believe that I will be reunited with the people I love in heaven.  I believe that this life is only temporary… 

2.  I believe 99% of the population was born good.  They want to be good and just don’t know how.  I believe people can be reached… changed… if only you can find the way. 

3.  I believe that somehow I am going to change the way people look at the world… for the better.  I don’t know how.  I don’t know if it will be through this blog or through teaching or … some other way. But… I believe that I will help people to stop using the “R” word, that people will learn acceptance of others, and that I can have a part in this.

4. I believe you should own your actions.  I believe that you should stand up for what you believe in… but own those things. If you believe in something – say it out loud… and stand by it.  I rarely even get angry when students break a rule.  It is when they don’t accept the punishment that I become disappointed.  You can break a rule… but own it.  Be prepared to accept the consequences.  Be prepared to accept the consequences of your life. I believe that.

5. I believe that life is a gift.  That every moment wasted is … well – a moment you will never get back.  I believe you should live hard and love harder.  I believe you can have bad days and good days …. and bad moments and good moments – but you should still live hard… and love harder.  Because – tomorrow is just one more day closer to no more days together.
 Mama’s Losin’ It
Thanks MamaKat – for making me really think this week.

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It is So Much Work

I need to choose my words carefully.  I don’t want to offend anyone or misrepresent my true opinions.

Got everyone’s attention now?

There are these tools.  For children with special needs.  These … amazing resources.  They give life (literally) where life would not have survived.  They change lives. 

- In the literal sense… Alexander’s feeding pump has saved his life.  His g-tube has allowed him to be hydrated and nourished; I know he would not have survived the past year without it.  You have no idea how hard that is to actually say. Because the reality is I hate that thing.  I’m the mom that dreams of ripping that thing out. Who dreams of the day when we don’t need it.  Alexander didn’t use the pump regularly until last spring.  You can read that post HERE.  And…. then he just didn’t eat enough.  Went way down hill….. This past summer, there were days where he was not oral at all.  *sigh*

- In the life changing ways… we have standers, a wingbo, sensory toys, AFO’s, Vision therapy tools, a z-vibe, the iPad, and tons of other things to help Alexander develop skills he might never have gained.  I really feel these therapies are changing the things people (especially with Alexander’s syndrome) can achieve.  Sometimes older children are scary.  But, what if that is just because they didn’t have access to all the things we have now?

Ok. So here comes the controversial part.  To help a child with disabilities reach their full potential requires a ton of work. And… I’m not only talking about from the child. 

IMG00019-20101105-1136Don’t get me wrong.  Alexander is the hardest worker I know.  He puts more energy into sitting up than I put into any activity.  And often I find it ** tactless ** when parents of children with special needs whine.  This is a little different.  It is not a whine.  It is not a post about “why is this happening to me?”

But … on a very regular basis – I beat myself up because I haven’t done enough to help Alexander that day.

In case you missed it … Alexander is eating now. And I mean eating like a champ.  He is almost 100% oral.  I say almost because he is probably just shy of his caloric mark.  Here is where it becomes a lot of work.

* If Alexander is fed on the pump – all I need to do is calculate how many calories he needs, formulate a feeding plan, and pump it into his stomach.  (In all honesty…. easy)  There are other things that go into it… but you basically figure out  the best nutritional cocktail and serve it.

* I have fought the pump since the beginning and it has required a lot of extra time and energy.  And now… It is a ton of work.  Not only does it take him a long time to eat (time that I can’t do much else), but I must also count every single calorie and nutritional aspect of what he takes in.  Do you know how many calories are in 3/4 of an egg over easy? Or in 1/2 slice of bread? with a little bit of butter?  How about how many calories are in an oz of cheese? Or is it too much to give cheese and eggs on the same day because of protein overload?  How many calories are in “some” pizza? Or “some” pork? Anyway – you get the idea.  It is not easy to figure out how many calories he is getting during the day to recalculate how many he needs to grow.  It is so much work. I’m not going to lie. It is hard work for him to eat and it is hard work for me to help him to eat.

IMG00116-20110317-1828* The same respect, every piece of physical therapy equipment takes so much work.  Alexander has to work so hard to move those muscles, but I have to put his braces on, his shoes on, give him time in the stander, adjust the stander, put him on tummy time, help him roll over, help him grasp for things, make the signs for “more” and “all done” when he is eating.  We also have to use the z-vibe on him, mimic his coos, practice sitting, practice with the iPad technology…. practice.  It is labor intensive and … work.

It is really a labor of love.  I once heard a woman speak about how she spent 2 years touching her son on the shoulder to indicate when he should put the spoon to his mouth… until he was able to self feed. Two Years.

I am so grateful for all these things to help my son.  But, there are times when it still really lies on the motivation of parents to move past these tools… to put the tools to necessary use – so development happens – and they aren’t necessary anymore.  So much work.

So next time you see a parent of a child with special needs.  Celebrate any milestone you can. And give the child a high five. … and the mom a hug. Because she probably needs it. 

Thanks Shell…. For letting me Pour My Heart Out.

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Monday, November 28, 2011

This post is the equivalent of a “Real World” Episode

Who ever invented the term “terrible twos?”

They are the Terrific Twos. … The real terror starts at age 3.

I beg them. I remind them. I time-out them. I take things away. I do every single positive / negative reinforcement / punishment known to man.  They still don’t listen.

They climb on everything. They talk back. They refuse to eat. (Unless it is a cupcake.)

They steal toys. They hit each other. They try to throw chairs in anger? (Seriously… where did they learn this stuff?)

Tonight, I was speaking to a friend. I asked her, “Have you ever talked to someone and walked away thinking – ‘they must be on drugs?’ … This is exactly what it is like to have a conversation with toddlers.”

Later, we decorated the Christmas Tree.  I had to give the twins a broken strand of lights to choke each other with play with.

They dug out everything break-able and said, “Should I drop this?” as I shouted, “NO!” every 3 seconds.
If an ornament had a movable part – they tried to move it.  If it didn’t have a movable part before… It probably does now.

I give that tree until approximately 7pm tomorrow night. Then I say that tree is on a pile on top of two silly children.

And yet…. they are so cute.

And these pictures are completely true.  And they are also part of our night.  They are also part of life with twin 3 year-olds.  In reality TV… photos and video clips are compiled to show people in a certain “light.”

Tonight… my kids were angels.  Just look…..


This right here is the “Twin Money Shot.” You never seem to be able to get them to hug.  (or even look at the camera at the same time.) Super proud of this picture!


Oh yes… and that is totally a small cheese “knife” in Addison’s hand on the big photo.  It was the only way I could get them to let me photograph them…. to let her hold a knife. *sigh* Mother of the year award… again.

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Make Me Laugh Monday: Christmas is in the air….

Welcome  to this week’s edition of Make Me Laugh Monday.  Where you can embarrass yourself on my blog with funny pictures, funny stories, or … just laugh along while I embarrass myself (or my kids).  Either way… Mondays shouldn't be a bad start to the week. Life is too short.

First up:

Andrew has a “Christmas list” 


Andrew and Addison sing and dance to “I Want a Hippopotamus for Christmas”  Seriously. Too Funny.

Next up…. The time when I post photos that will make us all cringe  smile.

For those of you trying to copy Alexander’s Runway StyleHe is wearing a classic sweat shirt under a one two of a kind sleeping bag given to him by his girlfriends E and E, followed with yellow shades.  The new style is to cover one eye. … yes – he did this on purpose.
AddisonMooooommmmmyyyyyyyy…… I need more PPPPIIIIIIIIIIIIIIIIIINNNNNNNNNNKKKKK. please.
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I know you are wondering about the spoon.  It ran into the blender. Enough Said.


Black Friday Madness.  See that Big Black Ottoman? Didn’t plan to buy it.  Or almost anything in that cart. I just couldn’t pass it up. *sigh*

Finally … my favorite funny picture. This “hug” lasted all of 3 seconds.  You can see how thrilled they both are for it.  But her mom and I are forever friends.  So they will hug at every special occasion. ….. until they are 50 or so.  So go on and make those faces girls. I will just keep posting them.

Have something funny you want to share? Come on – Link up and join the fun! And .. if you have a minute – post the button to link back and share the love!



Sunday, November 27, 2011

And the Irony Is…

Sometimes you are so busy living happiness that you don’t really have time to blog about it.  I mean… really.  What is the definition of happiness?  To be happy?  Then what is the definition of happy? If you look it up, you will find a list of synonyms… not necessarily a true definition.  Because defining something you can’t touch is hard. So how about this….

Happiness is time spent with your family….
DSC_0823DSC_0783DSC_0828Nov 6th 2011 041DSC_0803DSC_0805DSC_0839DSC_0834DSC_0785DSC_0787DSC_0858

Happiness is creating a house from gingerbread and candy…..

Happiness is cutting down the perfect Christmas Tree….

Happiness is making some memories where your heart smiles with your face. 
Happiness is keeping plans with friends and family.
Happiness is cuddling your children.
Happiness is going to church… and watching your kids practice Christmas songs.

Happiness is …. Eating.  I know thanksgiving is all about eating – but for one little man – eating has come to a whole new level.  Here are a few videos.  Alexander decided his gift to us this Thanksgiving is … to eat. And we love it. He is almost completely oral right now. … for almost a week.  Happiness.

Don’t forget… tomorrow is still Make Me Laugh Monday.  Wait until you see the videos / pictures I captured this week!

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Wednesday, November 23, 2011

There are no words to really explain

The post of my heart tonight is about my friends.

So many people have done the 24 days of Thankfulness challenge in honor of Thanksgiving.  I started a post listing my things… and it was erased… and I decided I just wasn't going to do one this week.  But… then I posted 2 videos and a photo. 
The videos are of Alexander eating.  You can view them HERE and HERE.  But they aren’t the focus of this post.  The video shots got all sorts likes, loves, and comments on Facebook.  Then my friends started chiming in on my photo.  I received an e-mail from an old high school friend. At just the right time.  Another high school classmate dropped everything twice to help me get my self dignity (A.K.A. hair done) back. Just today.. a new friend gave me a generous gift.  Not because of the monetary value –but because of the meaning behind this thoughtful gesture.

It is sort of a given that we should love our families.  I’m proud to say that I have a relationship with God.  You all probably realize that I am thankful for my kids and husband.  But… do you know that my friends are sort of a life force of their own?

I have been amazingly blessed to join 2 elite groups.  Yes, I call them elite.  One is to become a mother of 2 children who walk the wild side at the same exact time.  (Twins.) Many people would not care to be in these shoes – but the mothers who journey this path with me are amazing.  They know things about me that I sometimes can’t reveal to anyone else.
              IMG_0029[1]                      IMG_0205[1]
I am also part of an ultra elite group of parents of children with a rare genetic syndrome.  When I have fears… I call them first. When I struggle, I know they will understand.  I felt pride knowing that I picked the right gift for a girl near and dear to my heart… who is turning 6 but … needs 6 year old interesting gifts that can be appropriate for a different developmental level.  Her mom and I?  We get each other.  I love that.
                 DSC_0084bw                 DSC_0770
My college roommate? I haven’t phoned in several weeks. Busy. But I love her. She dropped everything to come to the twins birthday party.  She is always there. Like no other.
                        Christmas 022                  
Most of the girls from my wedding… still on speed dial.  I need them.  I’m blessed with them.  The cheer us on.  They cry when I’m hurt.  They … are so amazing.
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Almost everyday at work – someone asks me, “How are things?  How is Alexander?”  How do people get such great colleagues?

I am thankful for my friends. Yes – I have other things I am thankful for also: church, family, Ray, Kids, etc.….

But today – I wanted to say to all of my friends… thank you.  There were over 100 phone, e-mail, text, and Facebook messages this past weekend.  Thank you….  I am Thankful For You.

And thank Shell… for the chance to link up!