Just us - there’s a little of the before, but mostly it’s the after...

What a Cheater!

Julien is standing on a concrete step to get up to Chris's level.

Not that it matters that much, he is almost as tall as Chris anyway!

There it is...the magical concrete step.

Good grief, I love my Baby Boy!

or 3...but who's counting?

Chris is the only one in our house not on antibiotics.
Addie is still trying desperately to recover from the awful ear/sinus infection that she acquired before Thanksgiving.
Julien is feeling much better as he just finished day seven of his antibiotics in preparation for a CT Scan on Monday...yep, right in the middle of all of this holiday cheer, we get to also financially contribute to several different physician's Christmas funds.
Man they're lucky.

Julien is having some major sinus problems, so lucky for us we have an ENT that doesn't want to sit around and wait for a year before deciding to figure out what in the world is going on with my child.

We are non-stop from now until after the first of the NEW YEAR - man oh man, I'm ready for a new one to come my way!

I had to switch around a few appointments next week to make everything fit, but as it turns out we have an appointment every day next week.

I'm tired and it's not even here yet...
AND
I forgot to mention that Addie now has seven therapy appointments each week.

SEVEN.
She so desperately needs each and every one of them and I am so proud of her for the hard work and sweet spirit that is evident at each session.

Also, let me share this little tidbit of information.

I sent Chris an email back on June 16, 2010 titled, "and people wonder why we're stressed".

Of course it was in response to the many times people act like we just lazily sleep away our days and avoid them just for the fun of it - which adds more stress to our lives.

This is what I told him:

"I just did a handy dandy calculation by pulling up Addie’s claims statements.

Since she was born, she has been to a practitioner that was able to file a medical claim – 180 times. That equals out to a rounded number of 4 visits per month since she was born.

If you add in therapy appointments – 381 appointments in all. That equals out to a rounded number of 9 visits per month since she was born.

That doesn't include private pay therapy."

An average of 13 visits per month.

Let me just say that for some people - that is nothing.

I realize there are so many people that have medically fragile children and practically live in the hospital.

For us, it's exhausting, but we wouldn't have it any other way because we know that at the end of the day, we are doing our best to give Addie everything that she needs in order to learn and progress

AND

at the end of the day we know that we have shown Julien that we are doing everything within our power to give his sister a better quality of life and all that he deserves, needs (and most always...wants).

Indeed...She is a Girl.

If I remember correctly, I had asked Julien and Chris if Addie's bow was still in her hair (because they tend to come loose during tantrums).

Monkus heard me and immediately became concerned...

She patted her head and said, "hair?" until we reassured her that everything was fine and she was absolutely beautiful!

I Have No Clue

How Kim managed to get this picture.

In an effort to attempt a picture of just the two of us, I sat Addie on the step about 12 inches from me.

Well, apparently at that exact moment, the world came crashing down.

She was mad - really mad.

I couldn't figure out if she was mad because I sat her away from me or if she was mad because she knew she wouldn't be in the picture.

Whichever it was didn't really matter.

All that mattered was that Kim took this picture as I kept the possessed little Monkey at bay by holding her at arms length.

Aaaahhh...the drama...never ends.

Of course she was just as happy as a little clam once I got up and walked down the steps...

My Sweet Baby Girl

In an effort to butter you up after the last post....

There is never a bad time to teach a girl about jewelry and color coordinating (the pine cone had been tossed aside and we had moved on to bracelets).

Photo courtesy of Kim at Kim Sharit Photography.

That Is Just Stupid.

(Some of you might think this post is bad timing, but I wrote it last week and am just now publishing it, so it is in no way in relation to the heart breaking tragedies in the recent days - please pray for our community in this time of grief)

Yes, each random topic relates to the other - and there is a whole lot of rambling to follow...

"Maybe You Should Think About How They Meant To Say It."

Everybody keep their underwear nice and straight, don't get them all wadded up.

This is just a post, not directed at anyone.

This is a soapbox moment.

I'm allowed to climb on up and I sure hope the sound system is working properly.

Please save your questions to the end.

What a lot of people don't understand is that if you haven't personally been through a situation - serious illness, a loss, a tragedy, the birth of a special needs child, etc. - that you really don't know how it feels.

You don't and it's annoying to pretend like you do.

Here's the thing.

Since Addie's birth, we have had an amazing onslaught of asinine comments from people.

Those asinine, hurtful and just plain rude comments even came from people that we specifically told not to say certain things around us because it was hurtful.

Frankly, first timers get a pass, but repeat offenders are intentionally trying to get on my nerves and to disrespect my daughter and my family.

The people who said that they understood, really didn't, and we let those comments slide.

In the beginning, I even let the comments slide when people said things like, "oh, I understand how you feel...my daughter almost failed math and we thought something was wrong with her" or "I understand how you feel because my son has asthma" or "I once had an ingrown toenail and had the rudest podiatrist"....ummm, right.

We even let a snarky comment or two slide about the intelligence of our sweet Baby Girl, but rest assured we have never forgotten and each and every time we see those people, that is what we think about.

So, I try my best to - as tactfully as possible - let other people know a general idea of what to say and what not to say to parents of children with special needs.

On the flip side of that...

from time to time, my sister tells me some of the stupid comments that people say to her when they find out that my two nephews died.

Oh, yes...stupid comments run amuck.

I won't dishonor her by sharing any of those comments.

Instead, we will focus on one of the stupidest things that a professional has ever said to her.

It took months and months, but my sister finally decided to join a support group to talk with other parents who have also lost children.

Part of the program "requires" that she see a counselor/therapist/psychiatrist once a month. Personally, I don't think anyone needs to be "counseling" my sister on the loss of her children if they don't know the pain first hand, but that is just my opinion.

This "counselor" made the statement to my sister that maybe she should think about how people intend their comments instead of the way she perceives them.

That is just stupid.

Really?

I mean really?

First off, I don't care how anyone intends their comments to be taken (I'm not a mind reader), it's how I take their comments.

Yes, special needs parents and parents who have experienced tragedies are sensitive to comments, reactions, the never ending stares, whispers and the gossip from people who have way too much time on their hands.

We are allowed to be that way.

If you said, "look on the bright side, at least your daughter has part of a working brain".

I am not going to look for that warm and fuzzy "intention" that you verbally slaughtered.

Depending on my mood will depend on what kind of response you get from me.

I am the worlds worst at sticking my foot in my mouth, I really truly am and could give you a list a mile long of the many times ridiculous comments came out of my mouth.

I have learned one very important thing over the last few years and that is to never tell someone that "I understand" when clearly I do not.

When my nephews died, I never told my sister that I understood....because that is stupid.

I don't understand and I pray that I never do.

In times of tragedy for other families, I don't pretend to know how they feel.

I think the best thing that people can do in those situations is to offer a hug, a pat on the arm, a freakin' honey baked ham or a chocolate cake, but for all the things good in this world, don't search for words that mean nothing.

Just don't say anything.

A hug says more than any words could say.

(....chasing some rabbits here...)

I know this may seem childish, but I don't think I will ever forgive my obstetrician for standing across the room the morning of Addie's birth and not acknowledging everything surrounding the birth of my daughter.

I don't think I will ever forgive her for not holding my hand, giving me a hug, asking me if I needed anything or telling me that my daughter was beautiful.

I didn't want her to be my friend, but as a professional, she had the power to change the course of the future for my baby.

Had I not been a strong willed and determined parent who loved my baby no matter the circumstances, I could have drown in grief and never taken the steps to give my baby all that she deserved because I was never encouraged to love her.

After all...she exhibited "a problem".

My doctor was the first earthly being to touch my Sweet Addie.

She was the first one to see her and she was also the first one to dishonor her.

She did not congratulate me or tell me one positive thing about my sweet Baby Girl.

(...and while I'm venting...)

I don't know if I have ever put into writing that with the exception of ONE physician - that I changed to brand new providers for my entire family, for everything - from head to toe.

I couldn't handle going in and seeing the same people that I saw when I was pregnant with Addie.

Once a few of them found out about Addie, it was just awkward from then on each time I saw them.

It's almost like they didn't know what to say to me.

I never wanted them to say anything, I just wanted them to treat me "normal".

I could go on and on and on, but this post came about for two reasons.

The first was because I had to sit at Thanksgiving lunch and listen to my sister tell me the comment that this "counselor" made to her that made her heart ache and made her feel like a child who was being scolded.

Second, because when I went in to see my GP the other day, he walked in the room, straight over to me and hugged me and told me that it was good to see me.

Holy hell.

Is that too difficult for people?

No, it's not and it completely made my day.

It also confirmed that I made the right decision by choosing him because he is a man of compassion and understanding and one who I can build a relationship with.

He doesn't tell me how I should feel or what I should think and he doesn't talk to me about Addie, he doesn't have to.

His actions speak louder than words.

So.

My one word of advice tonight is to please remember that.

Your actions speak louder than words.

If you don't know what to say, just don't say anything, but do something.

Give that person a hug, take them a meal, send them a simple "thinking of you" card, offer to run an errand for them....anything.

One of the nicest things anyone did for Julien was the first summer after Addie was born, the Mother of one of Julien's friends offered to take him to the pool for the day with their family.

That was amazing to us.

It doesn't sound like a lot but it made Julien feel special and it made us feel like we were worthy of their efforts.

(Thank you again from the bottom of my heart Susan W.)

As I'm climbing down off my soapbox and trying to find my bed, I want you all to know how grateful I am for your prayers and support.

Please know that I have more flaws than any blog post could list out for you and I make mistakes each and every day, but the mistakes that I make hopefully are not hurtful to people.

I have no desire to cause heartache to anyone - because that - I do understand.

Kim Sharit Photography - Story Time

Although the new pictures are posted in the header of the blog, I will still post them because usually there is a story to go along with each picture.

Most of you know that I absolutely love Kim and I don't think there is another photographer on this earth that would have the patience for my family - so that makes me love her even more.

As my luck would have it, Addie was evil during this photo shoot.

Right before we got out of the car, Addie was sitting on my lap and I was telling her that she was going to be sweet for Kim and she was going to smile and "not cry".

She nodded her head in agreement, it's just that she didn't know what she was agreeing to.

Hence, the bribery.

Yes, I bribe my children and therefore, have no problem letting Kim bribe my children.

We were desperate by the time this picture was taken.

We were trying to think of any way under the sun to get Addie to cooperate and out of desperation, Kim told Addie that she would give her a pine cone if she sat on the suitcases.

Yep...you read that right.

A Pine Cone.

Yes, the exact opposite of soft and fuzzy.

Addie doesn't appear thrilled about the bribery...