I Home School

I'm homeschooling.

There are handfuls of people who probably think I shouldn't be homeschooling. I don't know this for a fact as no one has said this directly to me. But I have heard some things.  I also sense the ideas in questions I receive when I talk about Marie.

Those concerns, questions and opinions are battles for me.

Simply going to church is a battle.  Everywhere my family goes there are concerns, questions and opinions.  When these things are brought to my attention, my defenses shoot up high and fast.  This makes me difficult to talk to. I have answers for most questions and concerns that come my way because it all gets repeated.  New town, same story. And that's okay because God is alive in our home.

I don't think I have made it clear how much homeschooling has lessened stress for me at home.

When Marie was in public school, the bus picked her up and dropped her off.  I woke up early to get her showered, dressed and fed. Mornings were the worst for us. I tried many ways to encourage her to pick up the pace and get things done so she would be on time. Lists, pictures, nagging, doing it all for her.  S-T-R-E-S-S

But then I had the entire day to myself. Wooo!!!! Yet by the time 3:30 would roll around I could feel the stress of what was to come creep up on me. What was it going to be today?  Did she eat her lunch on the bus? Did she sneak some nail polish on the bus and eat that instead? Did she pull her hair out of her nice up-do again? What about her "friends?" Did she kick anybody today? Was she disruptive in the classroom again? Are the buttons ripped off her new shirt? There was just about always something that would be wrong. Some of it was minor, as you can see.  But other times it wasn't so small.

After she got home there was a rush of things for me to deal with. Her appearance (torn clothing ect.), the report of her day, finding things in her backpack that aren't supposed to be there, looking at the homework hoping she would understand it.

Between getting home from school and bedtime there was a very small window to deal with what happened in her day, to get her homework done and to eat dinner and go to bed on time.  Forget playing.

S-T-R-E-S-S

Now we home school. It's not perfect.  It's not stress free, by any means. But it's working for us.

We get up leisurely now. Our schooling doesn't have a definitive start and end point.  For instance, this morning she is going to be starting an hour and a half late because I have had a rough morning. There are some days where we don't get to school at all. Don't worry, that doesn't happen often.

Homeschooling is helping to improve my relationship with Marie.  That seems backwards, even to me. While we have our really bad days, we also have good days.  This morning, with Denai sitting on my lap, I asked Marie to refill my coffee cup. That's progress. It's progress for her brain and it's progress in our relationship. When I ask her to do something that is for me, (it's almost a selfish thing) it's a small way that I show I'm willing to accept her and what she has to offer in my life.

While the stress from her public school days are gone, there is still stress being home all day together. She finds things to eat when she feels she won't be caught. (She will actually get up and look through stuff to find something.) If I leave the room, she likes to behave inappropriately - which is really irritating. She struggles with the most basic schooling concepts and I just want her to GET IT. She takes a really long time to learn.

Ultimately, that is why I home school. She takes a really long time to learn.

In math I have spent an entire math working with her on 1 + 0 = 1. I have learned that she learns well visually.  So we use blocks on the carpet to visually see that a number plus nothing equals that same number in the number sentence.  It's hard for her to understand which is frustrating to me because I don't see how it's a difficult concept.  However, she's starting to get it.  Slowly.

So, I home school. It's the right decision for us right now.

What Changed?

Many families can go camping - or go on a number of other activities and vacations - and have a lovely time.  Typically, I would say there is always an amount of stress involved in getting everyone and everything ready to go - especially with small children who "help" or older children who can't be bothered to be removed from personal comfort.  Yet, overall, families move on and have wonderful experiences together.  Some would even call it relaxing and peaceful.  That's why we, the Sexy family, enjoy camping so much.

Yet it's not all that peaceful and relaxing.  At least, not for me.  And if I'm feeling grumpy, for example, it plays into each family member and even effects the friends we are visiting with.

For me, family activities are tense and stressful with very little release.

Saturday night was our second night camping with our friends and I was almost begging Mr. Sexy to put the two girls to bed early so I could finally relax.  Denai was exhausted anyways but putting her to bed before the sun leaves typically proves difficult.  Marie, on the other hand, was a gem.  No signs of grumpiness there.  However, she tends to be my main source of tension these days.  So bedtime is something I always look forward to.

Mr. Sexy has been telling me often I need to relax.  WE need to relax.  But it ain't all that simple.

Something has changed between me and Marie and I have been spending a lot of time deep in thought about what it is.  A few months ago I was getting into the habit of being purposeful in my loving actions towards her, regardless of what feelings were feeling like.  The heart changes began immediately and true connection starting peeking its head out.  I saw glimpses of a genuine relationship with huge potential.  In each other we were finding small pieces of comfort and humor.

That's all gone now.  I feel as if I have gone backwards a year or so.  There are huge feelings happening to me and I am getting lost in it.

After visiting a class on spiritual warfare this weekend (read about the author, Dr. Karl Payne), after seeing the pain in Mr. Sexy's eyes every day, I have realized what it is that has changed.

I gave up.

I accepted.

I welcomed.

I have become completely complacent in my relationship with Marie.  There are two feelings at play now.  Numbness (if that's even a feeling) and anger.  I feel numb to her when she isn't around (you know, the sleeping part).  I feel angry when I see her.

I know how this sounds.  I even know what you are thinking.   I know because everything, EVERYTHING has been said to me when I begin to discuss the deep, dirty issues that life offers.  In order to put anyone's uneasy mind at rest, Mr. Sexy and I are seeking help in all avenues.  He is in counseling, we are meeting with a behavioral specialist (appointment is today YAY!), we are also seeking help spiritually and I am slowly making my way back to counseling.

I have a line from a song in my head.  I'm not exactly sure what it means, especially out of context:

Slow down, let my heart catch up to your heart.

(You can preview this song, Bethany, for yourself.)

It's playing over and over and over again.

Perhaps I need to slow down and fill my mind with the Holy Spirit.  Only through His strength will I be able to fight of those who torment my mind with all these huge feelings.

I have been thinking and talking a lot about feelings lately.  It was only a handful of years ago that I learned and realized that feelings are just that.  Feelings.  When they are good, it's awesome.  But they aren't always good.  Sometimes it's bad, like anger.  Good or bad, feelings are not to be trusted.  In my experience, feelings should not be trusted.  Period.  Unless weighed in with something else.

Fighting the feelings is exhausting work.  But hey, giving in to the feelings leaves me just as tired!  Either way, it's a battle.  So if it's going to be hard work either way, shouldn't I choose to challenge the big feelings and fight off the untruthfuls?  As I am typing this, I'm thinking, duh!  How dense are you?!  But that's no way for me to talk to myself.... or is that something else filling my mind with more hurtful thoughts and feelings?

Life is messy.  It's so messy.  Oftentimes it feels (there are those feelings again) like we are going to be lost in the storm forever.

I'm thankful for friends who can sometimes see more clearly than I.

I know it seems impossible, but you will make it through this. 

You will figure this out. 

I believe in you. 

I love you. 

These are the thoughts we should be focusing on.  

Step-Parenting Special Needs: My Journey Through Parenthood

S is for Step-parenting Special needs.

Everyone has a unique story.  This one is no exception.  It's not a story I ever expected to be a part of.  God has is plans, though, and I'm privy to it only as he allows.

I tend to share my journey openly and as honestly as possible.  This leaves much room for criticisms.  I have lost friendships, too.  People I thought believed in the hope and redemption of Jesus turned out to believe there is only hope and redemption for some people.  I am not one of those people, according to them.

In all the struggles that I have shared with friends, family and strangers, I remind myself constantly that I am not alone.  I can't be.  I'm human and a sinner just like the rest of the world.  I have received many emails from people who have the same struggles I have described but have never heard it voiced before.

Just because we choose to have children, whether it's through adoption, marriage or child birth, doesn't mean we are immune to anger, resentment, and even hatred towards those small, innocent hearts.  That doesn't mean we should act on those feelings.  But they must be dealt with.  Otherwise the seed will grow and become a monster.

I have seen this monster in the mirror.  It was a scary thing to not recognize myself.  It was even scarier to see the effects on my family.

The best thing I ever did - and still do - is be honest about where I'm at.

I don't understand Marie.  She does a lot of weird things that seem to yell DOWN SYNDROME in my face.  I am constantly angry at her so she is constantly in trouble.  I have felt a huge amount of resentment and hatred towards her.  It was overwhelming.  There were some days I simply couldn't be in the same room as her.  She has done things that made my entire body shake with rage.

What I was seeing was the behavior.
I wasn't able to see the heart.
What I was seeing was down syndrome.
 I wasn't able to see the girl.

What I am able to see now is that the anger issue has less and less to do with Marie and down syndrome and more and more to do with me.

Where does this anger come from?  Wouldn't it make sense that anger comes from pain?

Now, as the adult, as the parent, it's my job to work through whatever pain I have been hiding from.

This is the A-Z blogging challenge so go ahead and read the introduction and see a list of all my A-Z posts.

Guilt: My Journey Through Parenthood

G is for Guilt.

Guilt is a nasty little booger.
It eats away at me and pokes and prods.

On the surface, guilt makes me feel safe.
You did it once.  So do it again.  And again.
Now I feel hopeless.
And stuck.
Because guilt plays a nasty little game with my mind.

Sometimes I relish in the feelings guilt can provide.
I enjoy the sorrowfulness of my personal pity party.
However I don't enjoy the heavy heart I wear.
Booze should help with that.
But does it really?
Guilt is still there and following me around.
It doesn't let up and it doesn't get tired.

Guilt is nasty and mean and plays tricks in my head.
Guilt clouds my mind so I can see nothing else.

Guilt is a nasty little booger.
Guilt plays a nasty little game.
In the end, however, guilt doesn't win.
Forgiveness eventually reaches my heart.
Forgiveness clears my head and wipes away the guilt.
Forgiveness becomes my salvation.

Without forgiveness, I am lost.
Without forgiveness, we are all lost.

This is the A-Z blogging challenge so go ahead and read the introduction and see a list of all my A-Z posts.

Feelings: My Journey Through Parenthood

F is for Feelings.

There are 5 hearts in my family, each attached with 5 different sets of feelings.  How in the world is that supposed to work?!

I wish that I could just go with the flow of my feelings.  I wish I could believe the naive thoughts that the phrase "go with how your heart feels" is always good advice.  I wish that my feelings told me truths  all the time.

The truth is that how I feel does not necessarily depict a truth.

Here's a hard-to-share-example:

I feel like I can't stand Marie.  In the past I have gone so far as to voice that I feel like I hate her.  Then I met a group of people who, after hearing me speak about her, would say, "Wow, I can see you really love her."  Say what?!  That was not how I was feeling at all!  What I felt was the opposite of love!  I kept meeting with this same group of people and they told me these things over and over again.

Eventually I saw the truths behind their words.  If I stop to think about my frustrations with Marie I realize it comes from a place of caring about her.  Now that I know that about myself I can stop feeling hatred and start learning to love and hopefully one day I can honestly say I feel that love.

I heard once that feelings don't always come first.  Actions do.  So if I make the daily choice, scratch that, the moment-by-moment choice, to show an action of love, the idea would be that the feeling will follow eventually.

Mr. Sexy uses this philosophy on me all the time.  I'm not alway easy to love.  Sometimes what Mr. Sexy feels like doing is punching a car window or taking off for a drive or yelling at me so I can see how pissed he is.  But he's not the man he used to be.  Instead he puts aside his feelings and does something that shows me love.  Over and over and over again he does this.

The result:  It works.  And although healthy changes in our family feel very slow, the fact is there are changes.  My friends and family may not see them.  I may not always even see them.  But change is happening.

As I am learning that my feelings are not absolute truths, Michael is learning that same lesson.  I cannot describe how humbling it is to be learning a concept alongside my six-year old son.  So many times he has watched me white knuckle the steering wheel, breathing big, deep breaths while angry tears streamed down my face because my feelings were giving me untruths and I had to fight that.

I'm definitely not perfect in how I handle all my feelings.  I made mistakes yesterday and today and I will make more tomorrow.

But here's the truth: A feeling is just a feeling and not rooted in absolute truth.  For absolute truth I will need to turn to my Bible.  And that is where I will learn how to love.

Christmas, 2013

This is the A-Z blogging challenge so go ahead and read the introduction and see a list of all my A-Z posts.

Exhaustion: My Journey Through Parenthood

E is for Exhaustion.

This is my first semester being a homeschool mom.  Things have changed a lot since I was the home-schooled kid.  My mom was my teacher with answer keys and lesson plans.  Anything I learned, I learned from her.  Now things are different.  Thus, homeschooling is not what I expected.

In some ways it's easier.  Marie has a teacher so I don't have to to know all the answers (although I should at grade levels 1 and 2).  Her learning is all completely online.  Her time with teachers is via webcam every day.  So really, I don't have to lift a finger.

In other ways, it's a lot harder.  When I start something new I go all in and go a little crazy.  I typically spend a few hours every day creating my own worksheets for Marie to further help her understand the concepts being taught in the program.  On top of that I spend time teaching her these concepts as well.  My opinion is that an online course alone is not enough - particularly with Marie's disability.

This all leaves me feeling exhausted.  

I have been tired out by the kids before. But now it's even more so.  Sometimes, by the time Mr. Sexy gets home all I can do is hand off the baby and sit like a zombie while I watch a Grey's Anatomy re-run.  And the next day I choose to do it all over again.

Why?  Well, apparently I care about Marie, her education and her future.

This is the A-Z blogging challenge.  Go ahead and read the introduction and see a list of my other A-Z posts.

The Ups and Downs

Things have been so hard lately.  Most days I just feel like crying.  So I have a beer.  Sometimes the tears come and sometimes they don't.  

I don't need my faults pointed out.  I am aware of every poor decision.  

However I often need to be reminded of my victories.  I don't always see those clearly.  

For instance: Marie got a question right on her worksheet from last night.  It's a question that we have spent an incredibly huge amount of time on.  "Does everybody in the world have the same basic needs?"  It's a simple question with a simple answer.  But after weeks of studying through the subject of wants and needs she is finally getting answers correct.  

And that's all me.  I take full credit gladly.  

Another victory:  Just now I came downstairs and Marie held up some tissue saying something so quietly I of course couldn't hear her.  I was upset with her so I was very stern with my "What did you say?"  I got closer and she told me she killed a stink bug.  I had to smile and give her a high five.  I take full credit for that as well.  Like me, she squeals in horror when she comes across one of those darned things.  Also like me, she gets over herself and kills it.  Unlike me, she walks calm and quiet to the bathroom to throw it away.  I continue my squeals of horror for a few moments after I have dumped the stupid bug in the toilet.  I get shivers just thinking about it.  Stink bugs are terrible.  

Mr. Sexy met with a behavior specialist who had some interesting thing to say about Marie's behaviors. 

 First, she thinks Marie's behaviors are mostly attention desired.  Marie is steal dealing with the fact that Voldemort left (4 years ago) and that I'm her mom now.  

Second, the specialist related to my story of being a step-parent to a special needs child and not finding any connection.  She has an adult step-son with a disability whom she has never loved and never will.  As I say that I see it sounds crass and many may see this woman (without knowing her) as heartless.  I don't know her but I hope to meet her at some point.  

She. Gets. It. 

And she voices it.  

I've got to say I believe I have come across only two other blogs where the true ups and downs of parenting a special needs child is portrayed.  Every other blog (that I have found) is overflowing with smiles and fluffy thoughts about there normal special children.  Everyone copes differently and there is nothing wrong about blogging about the happiness.  It just makes me feel like there is truly something wrong with me when I don't have the happiness. 

Is there truly something wrong with me?  

Some would say hell yes.  Some would say my life is obviously stressful and even, at times, hellish.  

I say, not.  I am a human being full of flaws yet made perfectly in God's image.  (Or is it Jesus' image?  The trinity still confuses me sometimes).  

Life is a struggle.  

Right now, today, in this moment, I struggle.  Marie is working through her last chore: garbage duty.  She does it every week.  Yet tonight she is not completing her task.  I don't know why.  She knows what to do.  She has told me.  She has done it before.  But instead of moving forward she is standing in a room and doing nothing. 

This brings me to the last point.  The behavioral specialist said that Mr. Sexy and I need to allow Marie to work through her obstacles - providing she is given the appropriate tools to accomplish the task at hand.  We should not be giving her hints and telling her what to do next when completing her task.  She needs to work through her humps herself.  Even if that means standing in a room for two hours.  That makes sense if she is seeking attention, right?  Oooh when I don't do my chores mom and dad talk to me A LOT.

So I am going to take my beer to the couch and veg to some American Idol while Marie contemplates her journey to the next trash bin. 

   

Journeying Towards Acceptance

I'm linking up with Kaitlyn today for her Friday series:

My daughter doesn't have Asperger's.  But she does have a disability: Down Syndrome.  

Also, biologically, she is not my daughter.  This would would make me her step-mother and I have only been in her life since she was eight years old.  

Step-mother. Step-mom.  Mom.  Mommy.  Mother.  Caregiver?   

Who am I? 

In Marie's world, I am her mother and there is no other.  Even after meeting her biological mother a few months ago Marie still has one mom.  That's me.  

And if I'm being honest with you, sometimes that down right pisses me off.  

See, I wasn't supposed to be her mommy.  I was supposed to be her step-mommy.  I had aspirations to be the best, too.  And before V (bio mom) left town three years ago, I was the best.  I looked past all the weird things Marie did all the time.  She has down syndrome for crying out loud.  I didn't even know what that was until I met Mr. Sexy and worked up the nerve to ask him about it.  Then I had to do research.  Lots and lots of research.  

Four years later I still don't understand down syndrome.  I still don't understand Marie. 

Well, I became Marie's full-time mom just a few months before Mr. Sexy and I married.  Towards the end of the school year Marie lived with me and my son in my two-bedroom apartment while Mr. Sexy lived with my parents two hours away so he could work until the wedding.  During those months leading to our wedding day I wrote Mr. Sexy three letters at three different times, each one giving him an out to our engagement.  I felt like I was going through hell and we weren't even married yet.  How was it going to work to become a loving family?  

In my letters I poured out my heart leaving nothing to the imagination.  I told him how I yelled at her and made her cry as my non-understanding of her was the gateway to anger leading me down a very dangerous path.  I have spent the past three years learning that my anger is not at Marie but with something else.  She just happened to be an easy scapegoat.  

God has been hard at work in my family.  And so has Satan.  There is a constant tension and when I relax Satan attacks. 

This next line is hard for me to admit and believe in my heart and believe in my head as truth: 

Marie is teaching me every day. 

When I'm too hard on her because she is not putting dishes away correctly, she is later able to smile, hug me and forgive me.  When I'm beyond frustrated at the fact she ate more inedible stuff and I lash out with a tongue of fire, she will later accept my apologies and return with her same love and affection.  

Bottom line: She loves me.  As much she doesn't understand me, she loves me. 

For a long time I thought I hated her.  Her differences were in my face, taunting me constantly.  I thought I disliked her so much that I would wish V would come back and whisk her away.  Then I joined an amazing support group and was able to talk openly with other women who understood how I felt.  The encouragement and truths they told me stunned me, motivated me, and gave me hope. 

"You obviously love her very much" is a comment I received so many times.  At first I shook my head (isn't that awful) and was taken aback because love was not what I was feeling.  As I heard this phrase from my friends over and over again I began to see the truth behind the words. 

I wanted her to succeed in life and when she didn't I was disappointed which looked like anger instead.  I wanted her to stop peeing the bed because she was getting a rash from the pee and it looked like it hurt.  I wanted her to stop binge eating in the middle of the night because one day it will make her overweight and sick.  I wanted her to stop chewing her fingers because it made her look weird to her classmates.  I wanted her to talk in sentences because friends and strangers weren't able to communicate with her well.  

I wanted a huge list of things for her.  But in my eyes she fell short over and over and over.  

Finally the darkness covering how I see her is starting to lift.  I actually think our new endeavor of homeschooling is causing relationship change in a positive way.  Now Marie and I spend all day together.  All day.  A year ago I was happy if she spent all day in her room after coming home from school.   Now we talk all day and I am teaching her things.  I am learning how her mind works and am challenged constantly to find new ways of getting information to make sense to her. 

We still have our off days.  She still likes to find random stuff to eat (and we are working on this).  She still pees the bed if we don't wake her up through the night.  

I'm finally starting to see her for HER apart from the down syndrome.  In my mind she used to be a walking Down Syndrome.  I know that's wrong and terrible to even think, much less voice out loud or on the internet where anybody can take my words and misinterpret them.  But it's the truth.  For so long I have struggled to see past the appearance.  Now, years later, I'm finally starting to see her heart.

Marie amazes me at every step of life.  It's hard for me to accept that God placed her and I in each other's lives for a purpose that will and already does bring him glory.  Our story isn't about me, or her or my amazing family.  It's about His Story.  I am lucky to have a part in it. 

Step-mother. Step-mom.  Mom.  Mommy.  Mother.  Caregiver?

So who am I really?   

Logistically I'm her step-mother and I accept that title on paper.  Emotionally, however, I finally accept my earned title of Mother.  

She Got the Bronze!

Today I gave my kids love, time, patience and energy in a way that doesn't happen all too often.

My morning began with waking up late.  Then Michael threw up on our way to school.  Thankfully we had just dropped Mr. Sexy off at work so it was easy to turn around and get him cleaned up.  Then Michael barfed again on the ride home.  Fun.

Michael barfed 5 times by lunch.

After getting home that morning, cleaning up the mess, getting Michael situated on the couch and Denai down for a nap I could focus on Marie.  Turns out out internet wasn't working again so she wouldn't be able to work on her lessons or participate in her LiveLessons (webcam chat room/classroom deal).  Awesome.  Well, I'm no quitter and I devised my own lesson plan of sorts based on what she is currently learning in her online program.

It went swell.

Yes, swell.  It was interesting to see how little information she is retaining and how important patience is going to be in her lessons.  We sat for 45 minutes while she tried to answer the question, "What is different between this picture of the kitten and this picture of the cat?"  It was brutal.  And soooo boring!  I almost fell asleep.  No joke.  When it comes to coming up with her own ideas, Marie needs a lot more practice.

Less than an hour after Denai's nap I heard her screaming.  Awesome.  She really needed a solid nap.  Her eyes were puffy and red and she was covered in snot.  Great!  It turns out she grabbed ahold of a cold along with her crazy bad diaper rash which makes her cry every time we have to wipe her.  It's terribly sad to change her diaper these days.

So yes, what a day.  It's now just about 7:30pm and I'm SO READY FOR BED.  But not yet.  We fixed the internet for the first time today plus I have to watch at least part of American Idol with Mr. Sexy before I pass out.  Side note:  We have followed American Idol for years and this season is so far the best!  Woot woot!  Although Scotty McCreery's win was pretty phenomenal too...

Anyways.  I gave myself to each of my kids in a way that doesn't happen often.

Evan: Lots of TLC.  I rubbed his back every time he barfed and cleaned up mess after mess.  Poor kid.  I felt awful for him.  I served him fresh water, crackers and pedialyte popsicles.

Marie: I gave her time and attention that I normally don't.  We sat in the den, looking at each other, talking to each other, and hopefully at least one of us was learning something.

Denai: She needed me to coddle her for a bit.  I'm not a fan of coddling but every once in a while it's needed.

The most interesting outcome of today was Marie's change in demeanor.  When it was time to pick up Mr. Sexy from work she was all about announcing that she had her snow boots, hat, gloves, scarf AND a book to read for the car ride.  I ALWAYS tell her she needs her hat and gloves but she never grabs them when it's time to go!  And I haven't seen her initiate bringing a book in the car for a long time.  Reading in the car is good.  I used to get so much reading done there as a kid.

Another interesting element that came out of today is my sense of fulfillment.  I conquered!  The vomit, the alternative mini-school program and the extra sensitive Denai.  I didn't yell once, although I'm pretty sure I got angry over something stupid.  But hey, I'm no saint and we all know that!

I'm just feeling like a deserve a medal.  Probably a bronze though.  If I look on Pinterest I'll see what all the gold medalist mom's are doing for their kids who get sick and do school at home.  

My Ruffled Feathers

I need to talk very frankly right now.  If I wind up hurting someone's feelings I'm sorry.  I share intimate details about my family with whoever wants to hear which leads way for offhanded comments.  A lot of the time I can shrug them off.  Today, however, that just isn't the case.

I remember the first time I met Marie.  She was 7.  It was my turn to watch the kids upstairs during Care Group (like a Bible study).  She was loud, obnoxious and she had control over the entire room by singing loudly and rocking in her rocking chair.  She didn't care to quiet down even when I asked her nicely and sweetly.  Oh boy!  I was finally able to entice her and all the other kids with a book.  And then Marie, with her hair in a fro from a long day of school and play, was in my lap and in my face.  It was so, so awkward for me!  She was way too big for my lap but in her mind it was the best spot.  I did finally ask - actually demand - that she sit on the floor so I could see the book. I really love this memory and I hold on to it.  It's the memory of our first connection.  She felt safe to throw herself into my lap.  It made me feel special, like she liked me.

I didn't know she had down syndrome at the time.  I only knew there was something different about her.  At this point her dad (Mr. Sexy) made me nervous and I was embarrassed to ask what I thought was a silly and rude question: What's wrong with her? (Okay, that sounds a little rude.)  I'm pretty sure someone even told me what she had but it was so ... weird ... to me that the name didn't stick at all.

"She doesn't look like she has down syndrome at all!" 
(This is not an exact quote from anybody in particular.)

Mr. Sexy and I get these comments all the time.  I didn't realize why it ruffles my feathers just slightly until Mr. Sexy said it like this: I feel like it undermines our struggles. 

That may not be true.  It may be illogical.  It may not be fair.  But that is truly how it feels.  I struggle day in and day out with the fact that Marie has down syndrome.  She does things all the time that are not typical of the normal kids.  Her face twitches, she licks her lips so much they are constantly flaky and dry, she doesn't speak well considering her age, she is generally slow and simple and she will eat herself sick.  I don't say these things to be mean or diminish who she is in any regard.  I am simply calling it like I see it.  She has down syndrome.  These are some of the attributes that come with it.  And yeah, they are the negative ones.

All this to say: It doesn't take much effort to realize there is something about Marie that is different from your neighbor kid next door.  It only takes a few minutes of talking to her or watching how she behaves or even by hearing me talk about her to see it.

It's okay not to understand it.  It's okay to ask about it - although I understand that would be scary especially if you don't know the parents!  (I was afraid to talk to her dad about it at first.)

But someone telling us Marie doesn't look like she has down syndrome ruffles my feathers.  That is basically saying they don't know our family in the slightest.  And that's okay too.  We don't have to be friends with everybody.  But why broadcast that ignorance?


"My kid does that all the time!" 
(This is not an exact quote from anybody in particular.)

Again, I hear this A LOT.  And I get it.  People want to relate.  I've done this too!  We want to have something to say.  We want to try to encourage or make light of a situation.

But again, hearing this statement rubs me wrong and usually I can brush it off.  But today I'm having a difficult time doing so.

I think Mr. Sexy still says it best: I feel like it undermines our struggles.

This may be wrong, irrational, unfair and you may not understand it.  But I have to be brutally honest today.  I HAVE TO BE.

I classify many of Marie's behaviors as weird.  Marie does weird things.

When your kid is three and learning about play dough she has to eat it.  It's a right of passage.  She may nibble on it for years to come.  But there comes a point when she realizes it's too salty and it's not meant to be eaten.  So she stops.  Well, Marie doesn't stop.  So while your kid can make the connection that it's time to grow up a little, my kid can't make that connection so she turns into a teenager doing things your kid has forgotten they ever did!

Marie wets her bed.  She is 12.
Marie at a bandaid today.  She is 12.
Marie at a tube of Chapstick, Neosporin and diaper cream on Sunday.  She is 12.
The day before that she shared a carton of ice cream with our dog.  She is 12.

I have a huge list of weird things Marie has done or eaten.  I don't think my list would bore you either.  But for the sake of time, let's move on.

Every time she does something weird it hurts.

I want better for her but have no idea how to make that happen.

My hurt quickly spirals into anger.

That anger results in broken relationship.

So as I continue to share the deep struggles I have with my daughter I will be working to grow a tougher skin.  It's just that today is not that day.  Today I'm weak from the exhaustion of the fight against down syndrome.  I do fight it.  I want to erase it.  Ignore it.  Squeeze it out of her.

But I can't.  I know this truth in my head.

Emotionally, however, I'm still choosing to fight a fight I won't ever win.

How lame is that?!

Disclaimer: I know that nobody has intended to ever hurt me or my family with comments.

I will not spit.

I have too many things I want to blog about on this foggy Monday morning.

Chopping firewood in our backyard.

Speaking of fog.  It's been foggy one week straight now!  That's 7 days of zero sunshine.  Not even a glimmer (that I could find at least).  It's so depressing.  To top it off I spend most of my days in the yellow light of my basement while I watch Marie slo-o-o-wly make her way through school work.  It would be nice to take a break and visit the sunshine.

Speaking of school: Marie is starting her morning with 50 sentences that I require to be in her very best handwriting.

"I will not spit."

I checked on her before bed time last night and found wet spots on her sheets and her fingers were wet.  I thought it was snot - GROSS.  Then she told me it was spit.  Apparently she thought it would be fun to spit on her sheets and in her hands?!?!

She used to spit; I just thought we had moved on from this weird and annoying and gross issue.  At school she used to spit on kids when she got upset.  I also used to hear her spitting while she was standing at the bathroom sink.  Now she is spitting in her blankets.

I know that getting angry over something so trivial is absolutely ridiculous.  I was so mad at her that I made myself all hot and sweaty - granted, I was also in the middle of doing laundry and our wood stove downstairs keeps us pretty toasty.

I was just so, so, appalled.  I went back into her room about ten minutes later after telling her she was going to sleep with her hands behind her head for a while.  She was spitting again!  This time just letting it bubble up in her lips.

Maybe she thinks it's cool that she can gather her saliva and make a bunch of tiny bubbles that turns into something wet on her hands.  Maybe she was trying to see how many bubbles she could make or how big she could get one to be.  I just don't think that's what her brain was really thinking.  Then again, I have no idea what her brain was thinking and she could, in now way, explain to me her reasonings for spitting on her blankets and hands.

The conversations that I have been having with Mr. Sexy about Marie have been changing these last few months.  He may not see it completely but I am starting to feel less defensive about the decisions and mistakes I make when parenting Marie.  Therefore him and I are able to have a real conversation about it.

Spitting, for example.  I showed her my frustration.  I gave her consequences.  When Mr. Sexy came downstairs I explained everything and at the end told him I could undo it all if he wanted.  I don't quite trust myself when it comes to being rational with Marie.  Mr. Sexy agrees.  He also knows that when he is parenting in anger he isn't rational either.  It always makes me feel better when he tells me he understands and that he's been where I am.

Every once in a while he reminds me that my angers and frustrations at Marie are familiar to him.  He was once there because it took him years to finally accept one simple fact.

Marie has down syndrome.

So now when she does things that are completely out of the ordinary for a girl her age he can rest in the fact that she has down syndrome and that's okay.

I'm not quite there yet.  I've come a long way and I believe I am well on my way towards this kind of acceptance.

For me, however, I still strive to mold Marie into something that looks normal in my world.  Spitting into her blankets and on her hands is not normal.  It's down syndrome in my face and try as I may, I can't change a damn thing about it!

So yeah, I'm frustrated.  And Marie is writing sentences.

On the plus side she is getting a lot of work in penmanship which is improving!

Changing Perspective

Today I slept in because I was so tired.  This means I missed my shower and when I miss my shower that means I plan to stay home all day so why change out of my sweats and t-shirt I wore to bed?  Forget putting on makeup and brushing my hair.

Today the kitchen is a little messier than when I woke up this morning and the dining room is only slightly less cluttered.

Today I got caught up on Revenge (guilty pleasure) and took an online quiz to see which Grey's Anatomy character I am.  The quiz told me I'm April Kepner.  Eww!  I really, really don't like her character.  I think I should be more of a Meredith or a Callie.  I like tequila AND I like to dance around in my underwear (in the privacy of my own home of course.)

Today I showed Denai some of her new toys, tried coaxing her into crawling until she got mad and fed her to her hearts content.

Today I worked on Social Studies with Marie.  We spent our entire school day working on getting through half one lesson.

And lastly, today I did laundry.

I feel lazy, unaccomplished and bum-like.

As I read down my list of "accomplishments" I see a lazy-ass.  But then I get towards the bottom and I realize how much time and effort I put into my kids.  Yet I still feel lazy, unaccomplished and bum-like.

I wanted to get up on time and shower because it makes me feel good, clean and ready for the day.

I wanted to get the kitchen cleaned up and organize the dining room.

I wanted to either work on my blog or organize our work spaces downstairs.

I wanted to see Denai crawl.

I wanted Marie to get through one lesson.  Just one.

I tend to be driven by tangible accomplishments and victories.  So the fact that I spent most of my day working with Marie and I wasn't able to click "Lesson Completed" shows the world (in my mind) that nothing got accomplished.  All that can be seen is an un-showered mom, a baby who was also in pj's all day, a messy kitchen and an open Facebook page (with loads of laundry in the background).

In reality I actually accomplished a lot.  I spent the entire day sitting with Marie at her computer!  I was patient while she struggled through some harder words as she read her lesson.  I occupied myself as she cut out her study notecards.  I persevered through the laborious process of note-taking.

For the most part my accomplishments today are not tangible.  Some victories will only be shared between Marie and myself.  I'm learning that that's okay.  It's okay that I don't always get dressed and that I didn't sweep the chips off the floor.

It's okay that the biggest victories today were purely relational.

Urinealysis

No matter how much I try to prepare for the smell of urine, it doesn't seem to be enough. I still feel angry, disappointed, discouraged and frustrated.

I was able to avoid the basement for most of this morning. Then I needed some logs for the fireplace.

As I left the couch headed for the stairs I still felt the smallest sparkle of 'what if?'. There is always the hope that the basement will not be engulfed with the pungent odor of Marie's urine. 

That hope disappeared.

I shut her bedroom door quietly.  I shut out the smell, the anger, disappointments, discouragements and frustrations. 

My daughter is 12 and wets her bed almost like clockwork. I say almost because over the last few months she has had short periods of staying dry.  The first time I realized this I almost cried.

 

I was incredibly proud.  I only realized she was dry because she walked by and I smelled... nothing. That's weird because when she pees the stench is in her sheets, her skin and her hair. After peeing she curls up in her blankets to continue sleeping and doesn't seem to be bothered. Anyways I smelled her sheets and they smelled like...nothing. This means not only was she dry that night but she had been dry for a while. I had still been making her clean her sheets every morning because I had lost all hope that she would ever be dry. I quit paying attention because it hurt too much.  That may sound selfish but it's the truth.

I made this a HUGE deal. We called the grandparents, we took pictures and we watched TV in our pj's because that is what you do when you don't have to wash your sheets and shower immediately.

She wasn't peeing herself anymore so she was allowed to wear whichever night gown she wanted (the One Direction nightgown is her "pee nightgown" so only one will get ruined by the urine and frequent washings). Then about a week later, as we were getting used to our new morning routine which was slow, simple and easy, Marie put on her pee nightgown for bed.  She broke the seal.

Since then it's been hit and miss. For a while it seemed that she peed when wearing her pee nightgown but not when she wore her pretty princess nightgown.  That theory got shot down. Then it seemed like she wouldn't pee when she went to bed wearing clothes.  That theory proved incorrect as well.  Now Mr. Sexy wants to start all over with her which means waking her up every two hours to pee on the toilet.  When she remains dry for a week she will get up every three hours, then four, and eventually she will be dry all night.

My opinion is that for some reason Marie makes the choice to wet her bed.  She may make the choice based upon what she wears or how she is feeling.  She may make that choice as she goes to bed or maybe she wakes up and decides to pee in bed.  Heck, Michael made that choice just the other morning.  I can understand that it seems easier to a kid to stay in bed and pee than to leave the warm blankets for a cold toilet. But every night making that choice? 

Mr. Sexy has a theory that I scoff at but he truly believes it. Honestly, he's pretty smart and excellent at reading people. He knows Marie and I better than anybody in this world. And that's his theory: Her struggles with bed wetting are completely emotional which in large part revolve around her relationship with me. He tells me all the time that Marie and I have desires to connect but neither of us have a clue on how to do it. We constantly miss the mark.

The reason I scoff at Mr. Sexy's theory is because he is pretty convinced she started staying dry after one night of drunken connection.  Wow that sounds really bad.  Let me explain.

Mr. Sexy was working that night at his second job which left me home with the girls. We had a busy day and Marie didn't have a chance to work on her homework. So I decided to keep her up and make her get it all finished. The plan was for me to grab a beer and watch TV while Marie worked upstairs.  Instead my beer and I parked at the table with Marie. It was incredible entertainment as I watched her figure out sentences to go with her spelling words.  The beer helped me to relax and ignore the imperfections I seemed to always find in her. Instead I saw a sweet girl working really hard on her homework.

I connected. We connected.

A few hours later she was done with homework and ready for bed.  That is when I laid everything out for her.  I put my heart on my sleeve for her and let her know just what I was feeling. I won't go into the details just know tears, hugs and smiles were involved.

It was about a week or so after that when I noticed Marie was dry.

Perhaps Mr. Sexy is onto something with his theory. I want to agree with him because it almost makes sense. Marie desires my approval so much and I desire emotional connection with her. Yet it's still so hard.

I'm incredibly frustrated about the bed wetting.  It's hard for me to ignore it in the mornings because I'm incredibly disappointed. She is better. She is so capable. I tell her that every morning.  But I also tell her that I am mad that she pees. I know that's wrong and not a loving way to handle the situation. That's why I shut her bedroom door in the mornings.  It gives me time to process my emotions so they aren't so hot for her.