Thoughts...

**I wrote this on November 19th.  I wasn't going to publish it.  I've decided that I should.  I am leaving all the typos and spelling mistakes because I was in a fragile state of mind when I wrote it.  I think it should remain just as it is.  I am sure some think I whine too much, but I think it's important to know that tragedy to one person isn't necessarily tragedy to another.  My world has been forever changed, and I'm not sure I will ever get over it.  I try everyday.  It gets easier and easier everyday, but it is always there.  A little black spot on my heart.  The spot where I have laid to rest my idea of what I thought all of my childrens' lives would be like.  Every hope and dream I initially had for Betsy has been buried there, and in it's spot I have planted new hopes and dreams.  Different ones.  It is a learning process.  One step forward, two steps back.  Certain things trigger my mourning to surface all over again, and I quietly push those feeling back into their grave and dust myself off, and carry on.  Yes, I am selfish in that sadness.  I can admit that.  In those moments, I have to remind myself my sadness is pity for myself and the way I thought things would be, or should be.  I definitely have other worries and sadness when I think of what Betsy's future will hold.  Jake and I cannot be there for her forever, but my darkest times are when I let the evil of self-pity grip my broken heart.  Pray for me.  Pray for sweet, sweet Betsy.  And always remember...EVERYONE has a cross to bear.  No one is immune from that.**

So, I've been watching 'American Horror Story'.

Not much to report. I guess I'm still waiting for it to get as scary as everyone says it is.

But, that's not really what this post is about.

There is a character in the show named, Addi. She is an awesome person living with Down's Syndrome.

Jessica Lange plays her kind-of-psychotic-but-has-good-intentions mother. And she plays the role well.

In one of the episodes, she's upset with Addi. She asks her if she knows what people think when they see the two of them walk down the street together. She goes on to tell her that they think two things:

1. That they feel lucky they're not either of them.
2. That she {Jessica Lange} must be a hero.

I watched this episode in one of those rare, rare, rare instances that I was home alone, and I cried.

Like a baby.

I wondered if that's what people think when they see my Betsy and me.

Grateful, and full of pity.

I am no hero.

Jessica Lange's character goes onto to say, "As if I had a choice.".

I didn't. Most mothers's do not.

Oh, well, I'm sure some think there is a choice.

But to the ones that are in it, really in it...they don't.

I had a choice in making her, but not how she turned out. Not how God thought she would be most perfect.

My, how long it's taken me to realize that she is just as she should be. Perfect in every way.

My perfect little girl.

We speak a perfect language only we understand.

She walks a perfect way that only I know when she'll fall.

She loves me so perfectly, sometimes I think I might burst from it.

One day, even she'll want to leave. She'll want to spread her wings in her perfect Betsy way. And, I will have to let her go.

And it will hurt.

More than with the other 3.

And the thing is, they'll understand why it will be harder.

Those other 3 are my hero. They know so much more than the average kid their age. And they didn't have a choice either. But I'm thankful. Thankful they know that kind of love, tolerance, empathy.

They let me love her the way I need to, and they get it. Even at their tender age. They know without being told why. Sure, they will resent me, or Betsy one day, for something, at some point for having to be so patient, and lenient. But it will be fleeting.

After 7 long years, I think I'm starting to get it. Why Betsy is all mine.

And the answere is simple...because she is supposed to be.

That's it.

Whatever I learn from it, no matter what I decide to so with those lessons, it's just 'to be'.

It's exactly what I needed exactly right now.

Maybe that doesn't make sense to anyone but me.

And that's okay.

Maybe it shouldn't make sense to anyone but me.

And her perfection is what I will always need right at that very moment

Unfathomable.

image via D. Bush: http://www.missouriskies.org/rainbow/february_rainbow_2006.html

Hello.  No I have not skipped town.  No I have not headed for the border.  No I have not been laying on a beach somewhere {I wish}.  I've just been getting these kids ready for school, and have been busy with photos.  Hopefully, when they return to school I will achieve some sort of balance. I know that sounds sad, but school equals a calm normalcy around here.  Then, come Christmastime, I will be whining that I feel like I never get good moments with the littles between school hours, sports, and social calendars.

But, enough about my silly life.


Recently, I was contacted by my bloggy friend Katie from 'Where is Thumbkin Pottery'.  She is on quite a mission.  She wants to raise money to fund adoptions of children with mental and physical disabilities from countries that treat these children much differently than we do in this part of the world.  It is shocking, and sad, and really hurts my heart to imagine.  I thought the best way to share with you Katie's passion is to share a bit of one of her emails to me...

This subject is such a killer for me -- all of those children in such terrible situations.  I think about it every single day, and wish there was a way we could adopt now.  I am hoping that in a year or two, those doors will be open for us, but for right now, all I can do is pour out my guts to people and advocate for them.  Nicholas {a child currently in an orphanage with downs syndrome} will be having a birthday next month, and while I don't know his exact status, it could definitely mean a transfer to a mental institution.  Children disappear from Reece's Rainbow all the time, and I fear that he will be the next one to become "unadoptable."  There are children in certain regions who are still available after a transfer, but they tend to decline quickly.  The difference between baby houses and institutions are pretty clear.  Conditions are bad at the baby houses in many areas, but the institutions are far worse in general.  Sure, there are some places that are better than others, but for the most part, being an orphan with special needs in Eastern Europe is pretty much hell.  The last few posts in my blog talk about it in more detail.  It is just so SAD.

So for some reason, I feel compelled (in a OCD sort of way, almost...lol) to advocate for one special little boy, Nicholas.  Maybe because he reminds me of Ben, or maybe it's the cut on his lip, or 70's style collar.  Most of all it's his expression.  It might look blank to some at first glance, but there is so much more there.  Tears my heart out.  So I have been his "5/5/5 Warrior" this summer, and my goal was to raise $5000 for his adoption grant through Reece's Rainbow.  Man, it's not easy!  Right now I have raised I asked for donations through FB, twitter, homeschooling groups, had a huge yard sale, and another one coming up, promoted my Kindle giveaway, my etsy shop (100% go to him right now), and just created a new one just for him called Saving Nicholas.  I just set it up last night, so there is hardly anything in there yet.  I wish I could have set up more local fundraisers that would have brought in more, like a spaghetti dinner or auction, etc, but I was not organized enough and time ran out.

I have only a few days left until the 5/5/5 Warrior event ends (7/31), and I would love for it to go out with, if not a bang, then maybe a little pop.  I will still be raising money for Nicholas past the end of the program, and probably will be until he either disappears (the money would then go to another child's grant) or until he is safely adopted.  But raising as much as I can for the 5/5/5 goal before it is over would be a great thing.  But #1 for me is getting his face out there.  It is so important that as many people as possible see him, especially prospective adoptive families.  You can use any of my posts, there is a video there that you can use...If people would like to donate directly to him instead of to the link on my sidebar, they can go to his page here and click on the donate button:  http://reecesrainbow.org/nicholas-25ha

I tend to be long-winded -- sorry about that!  Please let me know if you have any questions, suggestions, anything.  Oh, and if you know of anyone thinking about adoption, direct them to Reece's Rainbow and perhaps Nicholas will be found.  :)
Thanks so much, Beth!
-Katie
www.whereisthumbkin.blogspot.com


I know that time is up for Katie's 5/5/5 goal, but you can still help!  This is a seemingly never ending crusade.  I will leave you with a video from the Today show.  It is difficult to watch.
  



Will you help?

Spread the word.

Many of you probably don't know that it's 'R-word' day.  Or that there is even a national campaign called 'R-word'.  It's main focus is to shed light on individuals with intellectual disabilities.  In March, they have a special day set aside to 'spread the word to end the word'.  Today is that day.

I could go on and on about this topic.  Back in 2008, I did, HERE.  So, today, I thought I'd share with you a couple links and You Tube vids that speak volumes on the topic.

#1: "The retard in the next booth" from J.C. Wert
This is a post I can relate to.  Unfortunately.  I haven't encountered ignorance to quite this degree, but it undoubtedly exists.  Sad, but true.

#2 "Stop Using the Word 'Retard'" from Jeff Goins Writer
Straight forward.  To the point.  Who you are when no one is watching speaks volumes about, well, who you are.  The REAL you.

#3 Johnny Knoxville, Eddie Barbanell and the R-word {probably my favorite of all}

#4 We Need a New R-word


#5 ABC's "The View" discusses the R-word {I hate 'The View'.  But, I'm posting this because I am amazed that not all of these women agree on this ONE topic.  No matter what your political affiliation, job, religion, race: THIS WORD IS UGLY!  And, yes, Whoopi, it is VERY much in the same category as the 'N-word'.  All of the same principles apply. Used to describe someone who is thought of as 'less than human'.  And, Joy, literally it does mean to 'slow down', but get real, that's not the way it is intended when used in everyday slang.  Remove your head from your butt, please. Elisabeth, get off of your right wing soap box for just a moment, and let's not use this opportunity to advance your political agenda. Because, ladies, until we can agree on the bottom line here, we aren't making any forward progress.  Know better, do better.}


So, now you know.  


Spread the word.

Missouri residents: read.

If you live in Missouri OR if you are just plain kind and find this cause worth fighting for, please write your legislator.

Personally, I cannot imagine if Betsy had not had early childhood intervention {she received it from 5 months-3 years}.  These littles depend so greatly upon it.  It is the most crucial intervention they will receive in their lifetimes {those first 3 years}.  

THANK YOU!

image via 'The Technical Writing Company'

Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under Part C of the Individuals with Disabilities Education Act (IDEA).  Children and youth, ages 3-21 receive special education and related services under Part B of IDEA.   Special Education for Kindergarten – 12^thgrade is mandatory under IDEA.   Early Intervention and Early Childhood Special Education are voluntary under IDEA, but Missouri enacted legislation in 1990 to make it mandatory.   This past year, several states, including Missouri, have considered making these programs voluntary in order to cut costs. 

In the upcoming session, the Mo. State legislature will be reviewing options to reduce state expenditures for Fiscal Year 2012.     If the state leadership considers a withdrawal from the current statutory requirement that all eligible 3 and 4 years old children  receive special education, it must be made by a statutory change.   We know that such legislation would have a devastating effect on children, so we are urging families to contact their legislators to ask their support in insuring that Early Childhood Special Education does not get cut in an effort to balance the state’s budget.  

How can you help?   Please consider writing a letter to your senator or state representative.   Never underestimate the power of your voice!    Legislators need to hear from their constituents; and we want them to hear this message from many individuals!    A sample letter is attached to simplify the process,  but it is important to add your personalized message to the letter; especially if your child is currently (or recently) receiving early childhood special education (see paragraph 3 of the letter).    Including a photograph of your child is even better!  

Who is your legislator?   Here is a link to finding one’s legislator.  You search by home zip code.       

http://www.senate.mo.gov/llookup/leg_lookup.aspx

No legislation has been filed at this time, but we will be watching closely as bills are pre-filed in early December.   

Must reads...

Even after almost 6 years, I am often asked 2 questions concerning our life with Betsy:

1. How did you deal with learning about her condition?

2. How do you do it?

I have touched on the answers to both often enough on this blog, but have never been completely satisfied with my interpretation.  It is a difficult thing to articulate and fine tune.  Maybe it can't be done.

Concerning the first question, the closest I've come is this.

However, recently, I've read two things that have touched my soul...to the core.

The first is a response to the first question.  Back in December, Kelle Hampton wrote the birth story of her second daughter.  The happy day quickly took a turn when Kelle suspected, that upon holding her sweet bundle for the first time, her baby girl had Down's Syndrome.

image from 'Enjoying the Small Things: A Blog by Kelle Hampton'

Even though Jake and I didn't discover Betsy's condition until she was almost 4 months old, the shock and sadness over mourning the daughter she thought she was having is so poignant.   The sadness is followed by hope, and more love than she could have ever imagined filling every space in her soul.  

Find the full post HERE, and grab a tissue or two {or a box}. 

The second post was written by my bloggy friend, Tara.  

It addresses the second question: How do you do it?

My answer has always been, "You just do.".

No big mystery.  No real secret. 

Tara explains a bit further, and she does it oh, so well.  

image of Tara's daughter via her blog 'TMI'

Tara's comparison of the balancing act of raising a child with special needs to the careful editing of a photograph is brilliant.  

Read her post, HERE.

Grab a second box of tissues.

Really.  You'll need them.

Same & Different

Last week, Jake and I had a meeting for Betsy concerning her transition from her early childhood school setting to primary school, her inclusion in a regular education setting for parts of the day, her new special education classroom, and ALL OF THOSE THERAPY HOURS.  It's so overwhelming, and a bit sad (because we're even in a position that requires such a meeting), and happy (because there are so many people that truly care about Betsy and love her as evidenced by teary eyes), and scary (because we just don't know what her educational future holds).

Let's face it...kindergarten is hard for any mom. 

It's the big time.

It dosen't get any easier.

I sobbed in my car the day the bus took Jake away, and 2 years later with Pete wasn't any different.

I'm not sure how things will go this fall with Betsy.

I'm nervous.

My Dad has always said {concerning parenting}, "What you do for one, you do for the other."  Material and otherwise.  For all intents and puposes, I believe this to be true. 

But, what do you do when one of your littles is very obviously different?  A difference so great that even the other littles take notice and adjust their own interactions and behaviors with her? An anatomical and physiological difference? 

Whatever I do to try and lessen that gap, it's still there.  Undeniable.  I mean, let's face it...Betsy Jane gets treated differently.  Necessary?  Absolutely.  For better or worse? I'm not sure yet.  Undoubtedly, I'll know the answer to that in 15-20 years. I'll be able to tell the effect it had on the other beasties.  And, I hope I will have raised them well enough to take responsibility for their own place in this world, and not be victims or blame their father, me, or anyone else for everything that may go wrong in their lives.  :)

Fact: the differences between Miss Betsy and her peers in certain areas is quite profound.

This is why letting her go is hard.  Not necessarily hardER, but different.  In every fiber of my being, it feels different.  Cutting loose the bird that hasn't quite learned to fly, and expecting them to take flight anyway in the cruel, unforgiving skies. 

Okay, that might be a little dramatic.  Because, for realz, that girl rarely disappoints or fails to rise to the occasion.  But, it's still a pretty intense feeling.

How do you let go of something that was never really yours to begin with?  I'm just here to help her along in this life.  She is her own woman, a daughter of God, a free and independent spirit. 

And, she's ready.

I'm not...but she is.  Oh, yes, yes, yes she is.

One thought leads to another...

Betsy in utero circa April 2004

20 weeks gestation

~as perfect then as she is now~

I'm was thinking the other day that I need to get my mind-body connection back in gear.  It was only a short year ago, that I weighed 25lbs or so less than I do now.  And, I was 30lbs + lighter a year previous to that. 

Then, I thought about why I was the thinest I'd ever been since puberty, and I realized it was because my life was in a constent state of upheaval.  I may have been thin, but was very unhealthy.  There was NO mind-body connection.  At all.  My body went through the motions it had to, and my mind was else where...always elsewhere.  Worrying.  About Betsy.  About the future.  All of the whys, ifs, hows.  Some days I had to remind myself to eat.  I was tired all the time, I was cranky, I was stressed, I was starving.

So, then, of course, I started thinking about that time in my life.  It was desperate.  I think my weight gain is a sign that I'm healing.  I am not occupied by so many of those thoughts and questions. 

But, last night, while I lay in bed listening to Jake snore, I worried. 

Then, I cried.  For the first time in a long time, I cried without anyone knowing.  I cried silently in my own pain.  I thought about what a sight it would be if she could ride a bike, what her speaking voice would sound like and what she would like to talk about, I wondered if she would like to read books like her brothers, what her handwriting would look like, if she would insist on picking out her own outfits and dressing herself like her sister.  I know there's a lot going on her little brain, and, then, I wondered how she'll feel when I have to change her pants when she's 12.  I wondered if she'll ever find someone she loves more than her dad and me.  Or if she'll ever want to branch out and go live somewhere else. 

Then, I did something I haven't done in years.  I wondered why and I got angry.  I wondered what happened.  I wondered how it's possible for a mother and daughter to have such a profound interconnectedness and glorious bond when it's blatantly clear that connection (in the physical sense) was so lacking when she was in utero.  Why did my body ignore her needs when she was growing and developing inside of me?  I was mad at the injustice of her dad feeling compelled to shed tears of pride and happiness because she finally sat through a dental exam on Saturday.  Yes, a dental exam.  That wouldn't have happend if she were a typical kid.

I got angry at God for entrusting me with such a huge responsibility, as if it's not difficult enough raising children.  Why did he think I was equipped?  Why not someone else? 

Then, I got scared.  Scared, that my life, to a large degee, has been predetermined.  That control over certain things is not my own.  A plan was laid out without my input.

However, with parts of the plan, you're given a choice.  I believe without a doubt that His plan for me included this choice; to take this bump in the road and grow, and learn, and flourish from it or dig a hole, get in it, pull the dirt over my head, and rot. It seems simple enough, but both carry the weight of heavy consequences.  Some days, especially in the beginning, I wanted to choose the latter.  But, it's clear to me that isn't what's best for me or my family.

But, it's still hard. 

I heard the other day, that a friend of a friend, had a baby with a rare chromosomal defect.  Her and her husband are having a very difficult time.  It made me sad.  I know how alone they feel.  How isolated.  No one around them understands.  The helplessness they are undoubtedly feeling by not knowing what the future holds.  It's overwhelming to say the least.  No one ever asks or wishes for this. 

Hearing of this couple made me realize how far Jake and I have come.  In only 5 years. 

The thing we would have never asked for has brought more joy than we could have imagined.  That 'thing' is Betsy.

Thinking about getting healthy to thoughts of being the blessed mother to a child with special needs.  All in the matter of an hour.  It was exhausting.

Incidentally, after all that, I DID sleep like a baby.

She's a winner!

Although, I did not need someone to tell me Miss Betsy is a winner, it is official that, now, she is one. Awhile back, I posted here about Betsy being a nominee for the St.Louis County Special School District's highest honor for students, the Rosemary Zander Award. And, a few days ago we received word in the mail that she was chosen as a recipient. Woo-woo!

She had a professional photo shoot last Thursday for Special School District's and our home district's publications, and in April their is a huge sit-down dinner banquet. (I posted about the outfit Betsy will wear here.) It is quite a big deal.

So, because of the enormity of the event, we will be honoring her with a candy and dessert buffet at Jakey's communion luncheon. In my vision, I see it as beautiful as one that Martha would whip up. But, alas, I do not think I have it in my budget for such an extravagance. The hunt for the right candy and goodies at the right price has officially begun.

source MarthaStewart.com

ps I would appreciate any hints as to how I can do this as fabulous as possible on the cheap.

Thanks!

a couple things...

I found the blog of my dreams. The whole reason I started this craziness in the first place. You can find it here. It's a place full of other mommies who know just what I feel like some days. The trials, the rewards. It is won-der-ful. I have also been asked by its creator, Tara, (read about her little princess, Chloe, here) to share Betsy's story. I am not sure when it will be posted, but add the link to your favorites and keep an eye out. Yea!

I 'heart' bloggers!

Reminder to myself & promise to my lil' happy girl.

Imagine, for a moment, that the only way you could communicate was using a machine or simple signs. Now, imagine that you had trouble controlling your fine motor movements. That means that even though you may know what button you want/need to push or what sign you would like to show, you sometimes can't because your darn brain has difficulty sending the message to those hands. Stupid brain. Right? Well, that's what our sweet, little Betsy deals with every day of her life.

Now, that she is 4 1/2, and becoming quite an independent spirit, it is getting more difficult to endure her fits of frustration because it is so hard for her to tell us what she wants to tell us. Difficult for her, difficult for her siblings, difficult for innocent by-standards, difficult for Jake and I. Just difficult. There is a lot of crying, a lot of grabbing, a lot of hitting (herself), a lot of scratching (herself AND us), and a lot of hurt feelings. Not hurt feelings, like, when someone calls you a name or insults you, but hurt feelings, like, you were sucker punched in the core of your being, like, your spirit has been defeated. I feel helpless, sometimes hopeless (I cannot lie), I feel sorry for myself and Jake, but mostly I feel sorry for her.

So, this is my public promise that I will remind myself and my (most often) happy little girl, no matter how frustrated I get, that Betsy is probably
4, 584, 937, 658 times MORE frustrated. And, I just need to COOL IT! And, upon reflection, Betsy is really a genius. Her brain isn't connected to the rest of her, like "normal", yet she has accomplished soooo much. She has to work that much harder to do what is second nature to you or I. So, I'm thinkin' she has like a gagillion times more brain power than we do. I know someday, someway, she will be able to "say" whatever it is she wants.

Thank you, God, for the gift of Betsy Jane!

heavy & light.

heavy:
this was given to me by one of Betsy's special ed teachers.

i am sure it touches me on a much deeper level than the common folk, but it is wonderful, nonetheless.

A meeting was held quite far from earth
"It's time again for another birth."
Said the angels to the Lord above,
"This special child will need much love.
Her progress may seem very slow,
Accomplishments she may not show.
And she'll require extra care,
From the people she meets way down there.
She may not run or laugh or play,
Her thoughts may seem quite far away.
In many ways she won't adapt,
And she'll be known as Handicapped.
So let's be careful where she's sent,
We want her life to be content.
Please, Lord, find the parents who,
Will do this special job for you.
They will not realize right away,
The leading role they're asked to play.
But with this child sent from above,
Comes stronger faith and richer love.
And soon they'll know the privilege given,
In caring for this gift from Heaven.
Their precious charge, so meek and mild,
Is Heaven's Very Special Child.
-author unknown

light:
(and random. Plus, I thought you might enjoy this, especially after that festival of depression, above)

Look at all this Gymboree loot I snagged for, right at, $150.00. For Gymboree, that is good. Really good.

sha-weet!

Also, I have started on Mel and Josh's wedding cake toppers. This is the 'draft'. It isn't finished, but I think it is turning out very nice.

Mel's dress has a lace coat over it, similar to this (Jay, do not click that link). I was nervous about how that would translate on these little wooden beauties. There are definitely some things that I will tweak on the REAL one. But, I think, I've got it figured out.
Finally,
my dyno-mite sister figured out how we can watch movies like 'Twilight' (below), among many, many others for free on my computer.
I hope she hasn't voluteered my computer to avoid the FBI showing up at her house.
If we don't download these or burn them, is this illegal? Because it would be nice to know...

Have a

fab weekend!

My nightmare.

Betsy needs shoes. I hate, hate, hate buying shoes for Betsy. I normally love, love, love buying shoes.

For anyone.

Here's the problem...

Miss Betsy wears orthotics on her feet/ankles. They look like this. It is super tough to find shoes that fit her properly when you have to factor in those bad boys. Most shoes have to be about 16.5 sizes too big to fit over them. For a girl who just learned to walk in August, I don't think that is a good thing.

I certainly wouldn't want to wear shoes 16.5 sizes too big, unless I was at Clown College. Which, incidentally, my neighbor really, really wants to go to.

Let the nightmare begin.

Skater-type shoes work best. Wide and flat.

Today, I discovered these.
They have swiftly been purchased, at a low-risk, I might add. Free shipping AND returns. I am pleading with the Man upstairs for them to fit. Petty? I know, but, once and for all, I hope my angel girl could have shoes as awesome as she is.

That, AND to start talking.

Not too much to ask for, is it?

Keep the faith.

the R word

I have been trying to avoid writing this post for some time. I don't want to sound like a ranting mother or fanatic activist. But, I can hide in the shadows of avoidance no longer.

I would rather not have to come right out and tell you what the "R" word is, exactly, but I think that I must, in order for my thought process, here, to make sense. The "R" word is retard or retarded. It can represent either, or. I loathe this word. I have loathed it even before birthing, what the world would say is a less-than-perfect baby.

Yes, of course, I have used this word in my lifetime. Probably, last week. But I still detest it. It is so derogatory. I'm not really sure what derogatory means, but it sounds like a good word to describe the aforementioned.

Now, I have heard many a person use this "R" word to describe an event or action.
"Oh, that party was so re*#rd*d! I mean she had no good food, and there was only warm tap water to drink." or "That guy just snaked my parking spot. Is he r#&*$#ed? I'm gonna knock his block off!"

I don't take any major offense to these trite comments. We are all only human, after all. You've got to let some things slide. However, when it is used in an insulting joke (one about Sarah Palin and Trig come to mind), it is just tasteless and wrong. Not because I, personally, have a child with special needs, but because it is ruthless and unnecessary. There are things that you know when you hear them that they aren't worth repeating. Things you shouldn't want to repeat. Things that you wish you could erase from you subconcious, immediately. Things you want to stop thinking about so badly, it seems all you can do is think about them. Once I had heard of someone saying, "R*#@%*s, you gotta love 'em. They were put on this Earth for one reason only; to make us laugh!" Uh, are you kidding me with this? I think that guy is re#*%ded for saying something like that. Much more so than any challenged individual I have ever met (incidently, that guy is in prison, as I type this). What the h-e-double-hockey-sticks is wrong with people? I sure wish that I knew.

People that are differently-abled are certainly not inferior to the regularly-abled population. In fact, I think quite the opposite. I think that God chose them to fulfill a higher purpose. One that we are not equipped for. Because, frankly, God didn't think we had the chops. There is a divine order to life that surpasses all human understanding.

So, okay, we don't understand certain things. And the unknown is always a little uncomfortable for people. It is in our natural defenses to joke about things we are uncomfortable with or ignorant of. I do it, you do it. We all do it. But, now you know a real, live, person who has been touched by the unknown. It isn't so new to any of you anymore. It isn't scary or awkward. At least, it shouldn't be. Not now. Betsy has blended seamlessly into all of our lives, even if you only know her in the cyber-world. What was once a far-off concept is now so close you could touch it. Or her.

No one wants to be described in one word. None of us are that static. Betsy is certainly greater than the sum of that dirty word's parts. She is so much more.

Remember this the next time the "R" word is on the tip of your tongue. You may pull it back into the recesses of your "don't go there" mental file. And, just think, you may be able to educate someone else on this matter, and in 10 or 25 or 1000 years, we won't even use the "R" word any more. Or, other words that suck!

Wouldn't that be grand?

Au revoir!

The First Worst Wait of My Life.

MPS. What's that you ask? I didn't know either. I can't blame you if you don't. So, I will tell you, and then you can say, "At least I learned something new today." MPS stands for mucopolysacharidosis. It is a genetic disorder that has several types. Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

After we received some urine test results, we were told that there may be some cause for concern. The doctors told us that based on the findings from the urine sample, MPS was a possibility. In order to rule it out, Betsy had to get a x-ray of her entire body. Apparently, individuals with MPS have skeletal abnormalities. If her x-ray had any discrepancies, they were certain this is what our sweet girl had.

First, we encountered the wait for the x-ray. If memory serves my correctly, it was about a week. And what does any sensible idiot do in that week? She googles anything she can on MPS. That sounds smart, right? And what does any sensible idiot dwell on after googling MPS? The same words she read over and over on nearly every web site she found; "life expectancy is late teens to early twenties". Now, I don't know of anyone that would read something like that and not think the worst. There is no amount of, "don't worries" or "it will be alrights" that can erase the thoughts I had the ensuing days. Who thinks, when they begin there family, that these things actually happen outside of fiction and here say? Maybe the Eternal Pessimist, but even she seemed to be thrown a curve ball on this one. My mom, at a loss, who knew?

The x-ray day came. It was a nightmare. My little baby, she was about 10-months-old, lying there, crying on a cold table. The whole thing took about a half-hour. When they said a x-ray of her entire body, they weren't kidding. For it being the least invasive procedure she had had, it was certainly the most painful for me. As we packaged her back into her seat and got into the car to head home, all I could think about was a world without her. When I first learned of Betsy's developmental delay, I thought about how she may never walk, drive, have a job, get married, have children. But this, this was too much. Now the thoughts were of no Betsy at all. Who cares if she never drove a car, or worked in a cubicle, or gave birth? I certainly didn't. To have her (period) was the best gift God could give me.

Next, came the wait for the results. This took a few, long, endless, butt-dragging days. The call came, and the news was phenomenal! It was absolutely negative!

With perspective, I think, if this is the worst...God has blessed me with an excessively great life. In writing this, I also realized that I have to keep reminding myself that a fulfilled life does not always mean getting a license, landing a great job, making gobs of money, wearing a white dress and veil, or even creating new life. It is from within and above. Betsy may never know God the way I do (in a cognitive/intellectual sense), but I know that He loves her. I also know that she must feel His love in a way that you and I may never know in our earthly life. He has made her special. His gift to her is LOVE. Love that knows not of judgement, or race, or bias. It is pure, unconditioned, and full. In essence, she is the most fulfilled individual I know, and she is only 4!

Anyway, while everyone else's children, some of mine included, are graduating college, job hunting, planning weddings, and getting mortgages, my Betsy will be tromping around Italy with her Grandpa (he promised). The wind will be blowing through her hair, the sun shining on her face, she will be laughing, and, no doubt, getting free gelato for that infectious smile. What could be better than that?

And that, my friends, was the WORST wait of my entire life.

that is NOT Jake and I kissing in the corner, although, it would be nice if it were

Betsy's Story

The whole reason I think I am blogging is to connect with other mother's like me. I am in a dark place lately, and am only slowly seeing the light. In August of 2004, I gave birth to my third baby. A beautiful girl, our first girl. She came via c-section (another first for me) because of her breech presentation. She weighed a healthy 7 lbs. 7 oz. She had great apgar scores, all in all, a normal Cesarean delivery. We named our sweet girl, Betsy Jane. I felt high on life. Each and ever birthing experience is quite spiritual, and this was certainly no exception. I was relieved to put an end to a pregnancy riddled with severe morning sickness, complete with iv fluids because I could stomach nothing else. But it was all worth it, at that moment in August, when they placed her healthy, little butt in my arms.

The following months were a blur of nursing, two active toddler boys, nursing some more, and reflux, yet another first for us. When Betsy was not quite 4 months old, I started noticing little things that bothered me. She made no attempts to move; no head movements or rolling attempts. She also didn't appear to have reflexes that many new babies have. She would smile, but did not visually attend to anything. I said something to my husband. "Don't worry, all babies are different." I didn't buy it. Next, I approached my mom. "Well, I was going to mention something about her eyes. I think you should talk to the doctor." Ah, the Eternal Pessimist, she's always good for a spoonful of reality.

At the 4 month check-up, my fears were not put to rest, but rather I was told the DOCTOR would make Betsy an appointment with a pediatric neurologist. The doctor left, after handling me with the utmost care, and when he returned I was told the neurologist would see us in 2 weeks. Fast forward through the second worst wait of my life (more on the very worst later), the neurologist confirms there is a significant delay. "I propose some initial tests that I would like done as soon as possible. Can you drive down to Children's Hospital this evening to get started?" Whoa, slow down!

What followed was months of diagnostic tests and questions about my pregnancy (including about 3,678,878,293 people asking me if I drank or used drugs while pregnant. Uh, no and no). We saw geneticists, eye doctors, orthopedic surgeons, the neurologist. It was a whirlwind to say the least. Every procedure included anesthesia because of her low tone, even her MRI. And at the end of those months of testing, Betsy had no diagnosis.

Betsy is now 5, and still has no diagnosis. (Well, technically, it is static encephalopathy. This is a catch-all term, much like, cerebral palsy. Click here to learn more.) The good news for us is that she is healthy as a horse. She attends special school 4 mornings a week, and receives occupational and physical therapy (OT and PT), speech therapy, and individualized classroom instruction. More importantly, she has her family. We love her and support her, and celebrate every accomplishment, no matter how small, with her. She is special, no doubt, and we rally around her in a way that is normal to us now. She IS the odd girl out, but in the very best sense.