Random Pictures





Josh - as we got ready to go out during the school day. Trying to poke fun at the "homeschool kid" stereotype.



Andy made this flower out of some clay and an old pencil we no longer used.



My clay flower bouquet - made by Sarah, Elizabeth, and Josh

Working on her clay flower.

Working on his flower...

The Judge

She sits on my shoulder and seductively points out all that I could be - if only I were perfect. She spits venom into my soul by pointing out all that I am not and all that I never will be. She seethes contempt at my successes and is quick to point out what I could have done better. She is the voice who tells me that I am not good enough - not a good enough mother, wife, sister, daughter, friend, homemaker, teacher...you name it. Each of my failures she counts as a victory. She tries daily to bring me to my knees. She is the Judge.

Just about every day for as long as I can remember she has sat on my shoulder, never taking a break, ready to pounce on my inconsistencies and flaws. She is ever so ready to "help" me out by breaking me down to feel less than. She eats away at my well being, and becomes stronger as I become weaker.

She wears me out and tears me down. She is one of my biggest obstacles in becoming Real. She has done such a number on me that when I tried to come up with a list over the last two days of all of the things I love about myself I could come up with only 2 things. This is not right. Something has to be done about the Judge. I have many people in my life who love me for a variety of reasons. Why cannot I not see those reasons too? It would be such a tragedy if I were to leave this earth and never to see what they see. It would be a crime if I let the Judge rule the rest of my life the way she has ruled it up to this point.

My husband adores me, and yet I cannot see why. That is heartbreaking. I shudder to think of my own two daughters struggling with the Judge the way I do. Something has got to change. It just has to.

Do you have a Judge in your life? If you are like me, and I know that a lot of you are, I bet you do.

Maybe my approach to dealing with the Judge has been wrong. I hate her. I loathe the Judge and often yell at her to be quiet. (Well, actually I tell her to shut the H#$$ up.) Maybe, just maybe what I really need to be doing is befriending the Judge. Get to know her, and to understand why she is so critical of me. Maybe then I can learn to live with her on my own terms. I don't think she will ever go away, but I definitely feel that she does not have to have such a prominent central part in my life.

This is the first step in my journey to being Real. Get to know the judge. Find out why she is the way she is. Befriend her. Love her. Loving her, truly loving her, is the only way I can break free from the hold she has on my life. I know that this will not be easy, but like so much in my life, the struggle will be worth it in the end.

image courtesy of: askville.amazon.com

Becoming Real

I am going through some growing pains. Life seems to be an endless game of bending and stretching. Most of the time I am grateful for both the lows and the highs of my life because I come out of each a better person. It seems like I have been on a journey for sometime now trying to find my footing in this world of what is most Real to me. I have talked before about how I live so much of my life with my feet planted in both worlds. Too afraid to commit to one side or the other out of fear of choosing unwisely. It is tiring, trying to maintain this balance, and I find myself, in some areas of my life anyway, wanting to jump squarely on one side no longer maintaining the balance I have held onto for so long. But I am afraid to do this. Fear is what keeps me in the middle of so many issues in my life. Fear of being polarizing. Fear of not being liked. Fear of offending or upsetting someone else. Fear of being wrong. Oh, fear has a good hold on my heart. It has for as long as I can remember, and although I take steps to live authentically, it is always fear that pulls me back from fully living that life.

I want to be Real. I want to be Really me. For me, this means growing and changing and losing some hair and maybe some of the people in my life. I know that I have the strength to be Real. Sometimes, though, it is just so much easier to not be. To go with the flow and agree with the crowd. Sometimes, it is easier to do something my gut is telling me not to, and to have an internal fight within myself than to listen to my gut and fight with the world around me.

I really want to be Real, not just in the those quiet moments of my life, but all of the time. I know that in doing so I will become ugly to those who don't understand the journey of becoming Real. They will only see my shabbiness and not the parts of me that make me Real.

I know that this conscious journey of being Real will hurt. I know that I will stumble and fall over and over again. It is in my strength that I will be able to get back up time and time again. It is my strength that will help to make me Real. Deciding to live with no regrets has forced my hand, and it is a much needed push. I am scared of some of the changes that I need to make, but I know that nothing worth having or living for is ever easy.

(Photo's taken from bing.com)

Simple Gifts

Simple Gifts

'Tis the gift to be simple, 'tis the gift to be free

'Tis the gift to come down where we ought to be,

And when we find ourselves in the place just right, 

  'Twill be in the valley of love and delight.

When true simplicity is gain'd, 

  To bow and to bend we shan't be asham'd,

To turn, turn will be our delight, 

  Till by turning, turning we come 'round right.

'Tis the gift to be loved and that love to return,

'Tis the gift to be taught and a richer gift to learn,

And when we expect of others what we try to live each day,

Then we'll all live together and we'll all learn to say,

'Tis the gift to have friends and a true friend to be,

'Tis the gift to think of others not to only think of "me",

And when we hear what others really think and really feel,

Then we'll all live together with a love that is real.[

The Earth is our mother and the fullness thereof,

Her streets, her slums, as well as stars above.

Salvation is here where we laugh, where we cry,

Where we seek and love, where we live and die.

When true liberty is found,

By fear and by hate we will no more be bound.

In love and in light we will find our new birth

And in peace and freedom, redeem the Earth.

'Tis a gift to be simple, 'tis a gift to be fair,

'Tis a gift to wake and breathe the morning air.

And each day we walk on the path that we choose,

'Tis a gift we pray we never shall lose.

by: Joseph Brackett

(lyrics taken from constitution.org)

This and That

Sarah is feeling better today. To say that this makes me happy is an understatement. Her appointment with Dr. Locastro went well. 20/50 in one eye and 20/60 in the other. 20/30 vision using both eyes. She has made progress with her vision, and for that I am grateful, BUT (and I hate to use that conjunction) Sarah's last day on steroids was yesterday. I feel, once again, that I am sitting on a ticking time bomb. Waiting for her to wake up one morning and tell me that her eyes are different again. I am ever so patiently waiting for a day that may never come, a day in which Sarah can go months and month (and dare I dream years and years) before having any more issues with her disease.

Each time she has an episode and relapses I am reminded that Hope is like a double edged sword. On the one hand, hope has kept me optimistic in some of my darkest moments. On the other hand, I have had some of my darkest moments because I had hope that did not pan out. Hmmm...Maybe I need to find another emotion in which to hang my heart on or maybe I just need for Sarah to catch a break.
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Bob will roll his eyes after he reads this post, and ask me why I share so much of our lives with the public, but I cannot help myself. I share because it makes me feel more connected. It makes me feel less alone. I share because I know that others are feeling some of the same things I do, and are not able to give those feelings a voice. Seeing that we struggle through some of the same things makes them feel better too.
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I thought I was pregnant this month. My period was 5 days late. It has never, ever been 5 days late (unless I was pregnant).  I was certain I was carrying a child. I am starting to wonder if I paid all that money for my tubal reversal surgery last May for nothing. That it was all a waste of money. I am even second guessing whether the doctor who performed the surgery actually did anything when he opened me up. I guess only time will tell.

I know that some people think I am crazy for wanting more children. Especially with everything going on with Sarah. To be honest, everything going on with Sarah only solidified my feelings to want to expand our family. Family, to me, is the most important thing in this whole wide world. Although I have interests outside of my family, they are my life. My children are the reason I was put on this earth. They are my purpose in life. Children are only young for such a fleeting amount of time, and to be able to walk beside them for this short while is an honor. The more the merrier. I am lucky that I have a husband, who although he is no where near as enthusiastic as me in my desire to expand our family, allows me the opportunity to try.
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The kids and I were talking about next school year today.  Andy and Elizabeth want to stay home next fall. Josh is undecided. Sarah would like to go back to 4th grade (and maybe 5th grade) - after that she wants to be homeschooled again. I want them all home with me next year, but I promised them that they could make the decision on their own after this first year if they would allow me to bring them home for this current school year. I know that the fall is a long way away yet and Josh and Sarah may still decide to stay home. Gosh, I hope that they do. I LOVE, LOVE, LOVE having them home with me. I hate Common Core, and worry about the education that they will be receiving if they go back. (I do not worry about the teachers - just the curriculum they are forced to teach.)

I don't know...my heart is sad about their conversations today. I think that Josh will end up staying home again. I have a feeling when he compares the perks he has at home verse that of being a public school student again he will choose to stay at home. I am not certain of this though, and will need to wait for him to make a decision. Sarah, on the other hand, wants to go back most days. I think that going back will make her feel more normal. I understand that desire. She feels so different because she has NMO that she will do anything to feel like a regular kid. Of course, Bob and I need to discuss what we feel is best for her too, but at least we know what her wishes are.

I wish that I had taken the kids on more adventures this school year. I wish that we focused on having more learning time outside of our house. I wish that we had done more science projects. I wonder if Sarah would want to stay home if I had made our school year more fun. I am stressing out about this, and I know that I shouldn't be. I just want her to want to be home. Maybe she does, but she wants to feel normal again, and feels that going back to the public school is the only way she can do so. Or maybe she just didn't like being home. I don't know...
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When She Cries

Bob woke Sarah this morning for an appointment with Dr. Locastro, and she struggled to get up. Her body was failing her, and her will was almost not strong enough to remove herself from her bed. With tears streaming down her face, she came to me, and said, "Mama, I am tired. I am so tired. I cannot do this.". My mother warned me that the changing of seasons would wreak havoc on her body, and I forgot to heed her words. Sarah's body isn't tired like yours or mine might be after too little sleep. Sarah's body is utterly exhausted - an exhaustion that you and I will most likely never know. Each movement she makes feels like she is carrying a 1000 lbs on her small body. Her neck is aching her terribly and her ribs and legs have been hurting her too.

It is days like this, when even though the ever missing sun is shining so brightly, I feel like there is a dark cloud hovering over my heart blocking out the light. I cannot help but feel a deep sadness and unfettered anger. Children are not supposed to hurt like this. Children are not supposed to know what it is like to have their bodies fail them. Children do not deserve diseases. Young children especially - who have no understanding that sometimes really bad things happen to really good people - who do not know that there is nothing that they did wrong to deserve a disease.

Photo courtesy of: luckytolovelyla.blogspot.com

When she cries it breaks my heart into a million different pieces. When she cries, it is not the cry of a child facing a child's issue. It is the cry of a child trying to face an adult issue that is wreaking havoc on her body. Her cries hurt me in the deepest parts of my being because I know that there is so little I can do to make her feel better, and there is nothing that I can do to make this disease go away. As a mother, I am supposed to have a magical "make it feel better" touch. This f$%^ing disease lessens my magic because its power is so real and sometimes so dark.

Some days, like today, when I am seething with anger at what this disease is doing to my daughter's body and mind, I am ready to go to war with it. I have my battle gear on, and will fight this b%^ch with every part of my being until the day I die. Other days, when I am in a more rational mind frame, I know that I cannot beat this disease by going to war with it. I can only beat it by taking each of its punches, and making the best of them. Only by being positive and in a good mind frame am I going to be able "win".  Unfortunately, after this mornings episode with Sarah, I am not in a rational frame of mind. I have my battle gear on, and I am going to take this thing on mano a mano. I will not fight fair. I will fight as dirty as I need to to tackle this a$$%)^& and beat the crap out of it. NMO has picked the wrong mama bear to screw with. That is a fact.

photo courtesy of: ellenpoems.blogspot.com

More Thoughts For The Day

One day, you’re 17 and you’re planning for someday. And then quietly, without you ever really noticing, someday is today. And then someday is yesterday. And this is your life. 

-John Green

You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.-Steve Jobs
(Quotes from: curatedquotes.com)

We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us.-Joseph Campbell 

A Thought For The Day

(Photo courtesy of: likeawhisper.wordpress.com)

“But I don’t want to go among mad people," Alice remarked.
"Oh, you can’t help that," said the Cat: "we’re all mad here. I’m mad. You’re mad."
"How do you know I’m mad?" said Alice.
"You must be," said the Cat, or you wouldn’t have come here.” 
― Lewis Carroll, Alice in Wonderland

Scenes From Chicago

With our first trip under our belt we definitely learned a thing or two. Number 1 on our list is planning our day around eating. No one likes tired, hungry kids or mommies and sitting down to a meal cures both the tiredness and the hunger. Number 2 is to make sure that we know our location. The St. Patrick's Day parade was NOT family oriented. My youngest son saw some chick's business when she bent over in her barely there "skirt"(IF you can even call it that). They also saw more completely wasted people and people doing recreational drugs than I cared to expose them to, and they also heard the 'f' word every 15 seconds.

On a positive note - the dying of the river was awesome. Probably one of my (and the kids too) favorite parts of the trip. They also enjoyed the Willis Tower. We also lucked out with the weather. It was cold, but definitely bearable.

On our way...

Welcome to Chicago...bumper to bumper traffic. 

Outside our hotel the morning of the parade.

Me & the kids watching as the green dye moved down the river.

It was impossible to see the parade because the crowd was so thick.  Needless to say we did not stay very long... 

The Bean

These drummers were AMAZING. We stopped for a while to listen to them perform. 

View from the Willis Tower

At the Lego store

See that woman hunched over behind the girls? She and the man she was with were passed out most of the train ride except for the times when they each took turns puking on themselves, each other, and on the floor. Was a pretty gross experience. 

Field Museum. (We wanted to go to the Shedd Aquarium, but there was a 40 minute wait outside just to get into the front door. The weather was frigid on Sunday, so we just decided to hit the Field Museum again.)

4 kids completely pooped by their weekend adventures. Ready to head home...

Chicago-bound

(Photo courtesy of: www.richard-seaman.com)

In just another day we will be heading out to Chicago for our first of several trips this year. Its significance is not lost on me, and I can feel the emotions already bubbling up inside of me ready to spill out.

In a way I feel like our lives are just beginning by taking all of these trips, but in another way I feel like part of our lives are ending. I am trying to show my daughter as much of the world as I can in case her world goes permanently black. I want to create as many memories for her and the other kids as I can, so that if there is a time when she can no longer see things on her own she will have all of these good times stored in her mind to recall at a moments notice.

These trips are going to make life more raw for me than I am ready for. I like to live my life with all sense of emotion controlled and neatly tucked away inside of me. I don't like living so on the cusp of what lies deep inside - both the good and the bad - because those emotions can cut like a knife. I am not sure I am strong enough to handle those feelings. I am afraid they will bring me to my knees.

(Photo courtesy of : www.richard-seaman.com)

I am excited to share these journeys  with you. You have been so supportive of me, and I take a piece of you with me where ever I go.  I can feel your love and thoughts of warmth with each passing day as we get closer to our trip. I know that you are as excited for my family as I am. Thank you for that.

We will be spending tomorrow packing up and enjoying a massage courtesy of a kindred spirit who I know would most likely not want to be named on this public space. He is as good at receiving praise and recognition as I am in receiving gifts, so in order to spare him discomfort he will remain anonymous (as much as I would love to tell the world who he is so that everyone knows what a great guy he is). I am ever appreciative of all of his love and support. (His wife, too, is absolutely amazing.)

While I do not want to wish our weekend away I am very excited to be able to come back and share our trip with you. "See" you when we get back!

A Day In Our Life

We took full advantage of the nice weather today and spent most of our time outdoors. From what the weatherman is telling us we should expect anywhere from 6-10 inches of snow overnight tonight. Because of our chosen lifestyle, this winter has not been as bad on us as it has been for those who have to go to a job outside of the home each day or to a school building, but I can understand why some are so upset about this latest (and maybe last) snow storm of the season.

This is what part of our day looked like:

Elizabeth with chalk paste on her hands. She used the past to make paintings on the sidewalk.

Sunshine and rainbows are two things I could certainly stand to see more around here...

Playing soccer for the 100th time today....

Lily taking a rest after playing soccer with the boys. 

St. Patty's Day decorations complete with rainbow and pot of gold above. (Made by Sarah.)

Sandwich bread. (Made by me.)

The girls made a modeling clay bouquet of flowers today.