Somehow or another Billy Joel must have written this about my daughter....

 (From February 2010)

It's not a huge surprise that this song is one of my favorites of all time and my 2nd favorite by Mr. Joel. However, the more I learn about my daughter; the more time I spend in her awesome presence; the more clear her heart becomes to me, the more this song seems to be hand picked for her.

She’s got a way about her
I don’t know what it is
But I know that I can’t live without her
................
She’s got a smile that heals me
I don’t know what it is
But I have to laugh when she reveals me
She’s got a way of talkin’
I don’t know why it is
But it lifts me up when we are walkin’ anywhere
.......................
She comes to me when I’m feelin’ down
Inspires me without a sound
....And I find the strength to keep on goin’
She’s got a light around her
And everywhere she goes a million
Dreams of love surround her everywhere

She comes to me when I’m feeling down
Inspires me without a sound
....................

She's just "The Girl". A million dreams of love surround her. Sometimes I wonder if she knows what she does to her dad and I. She is so inspiring, her smile, her laugh, her soul. From the time I held her little 20 oz body in my arms I knew this one was special. There was some overtime put in to this development of a beautiful girl. Sometimes I catch myself saying "When I grow up I want to be like my little girl." Leave me to my dream.... It works in my head....

I am so interested in finding a way to encourage/continue to encourage the light in her. I know the day might come where her imperfections shine through in ways that make my heart fall apart. I hope that I can remember these times with her and the day I realized a fantastic songwriter put my thoughts in to a melody.

She sure has a way............

Autism Awareness

(From April 2010)

It's April 2nd, World Autism Awareness Day.

As (most) of you know our son was diagnosed with Autism in 2006, he qualified for the diagnosis in numerous evaluations over the next couple years.

We poured all we had, and a lot of what we didn't, into getting him what he needed. It worked. Today we have a son that still qualifies for the diagnosis based on testing, however, if you know Gavin, you'd be hard pressed to find any Autistic like qualities when spending an average amount of time with him. He might seem rather "typical". His teachers know different, we know different- but to most, he's just "like all the rest". Which was EXACTLY our plan.

"If a child cannot learn in the way we teach ... we must teach in a way the child can learn." -Dr. O. Ivar Lovaas

This was something we adopted, in a major way. We "forgot" all the "norms" and went against the grain to teach him. It was hard, people tried to tell us we were doing it all wrong, backwards maybe. We couldn't heed the advice from others as they didn't have a son that couldn't communicate, didn't make eye contact or stop banging his head long enough to take a breath. They didn't have a child that screamed, non stop, for years. We sought out those who DID have a child like ours and found few and far between that actually had any hope. I found myself slipping in to a deep depression the more inner twined I became with these families. This isn't how it was supposed to feel. Suddenly I knew a little bit how Gavin might feel. Confused, alone and left wondering if this is how it felt.

I stood back and realized a few things. Our friends and family couldn't really understand- supportive and loving yes, but able to grasp our reality? No. Then, the families with children like ours, well *I* didn't understand THEM. We didn't understand Gavin. Gavin didn't understand us. So, as you might realize and I did at that moment, it's a breakdown of communication.

What do YOU do when you can't communicate with someone? You might learn their language. You might implement the power of touch. You might use a form of body language. You might just smile and keep saying in YOUR native language- I love you, hoping that might mean something one day. You might even hope that you'll hear it back, even if those pesky experts say you may never.

We learned Gavin's language. We didn't learn the language of Autism. I still am not familiar with that dialect. I didn't attempt to flood the information gates with all the different ways children with Autism learn, we employed therapists who worked 1:1 with him, I broke it down to how GAVIN learned- we honed in and dug and dug and dug. We dug until we found what we were looking for. We still have to get the shovels out occasionally to find a way with him, but the beauty behind that is we're getting to the point where he helps us dig. We have a child who's empowered not by his abilities, but his DIFFERENT abilities. He's strong. In his hand is a tool that he's learning to use. I don't think there is a better gift you can give your child then the ability to see himself, not as the VICTIM, but as the VICTOR.

Today we try to remember what it was like, but we can't. We just know that we have a little boy who showed us the beauty of life, locomotives (ask how many trains we sat and stared at and how many trips to Union Station we took) and most importantly a little boy who showed us how many different ways you could love without saying a word. We're fortunate to have a little boy who can tell us he loves us, but can't forget the families who are still learning the language of their Autistic child.

So, today we proudly "celebrate" World Autism Awareness Day.

Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind.-- Henry James

A life with no regrets... More possible than I think? Afterall, it all starts with a choice.

(From May 2010)

Sometimes I wake up, (even when I wasn't asleep) and wonder "What was I thinking?" Great, I guess I'll add another regret to the books..... But, does it have to be?

Life has alot of twists and turns. At times I wonder who/what I should be mad at for handing over the challenges we've been "gifted".

I guess I could find something, someone- but then I realize that is a CHOICE. I've said it for a decade now and believe more than ever- there is a "alternative" to all this. I could see it as; had medical intervention not been available, not ONE of my children would be here today- that is a near certain statement. The alternative to their life, no matter how complicated, would only be their death. None of them had the ability to breathe upon leaving my body, the twins couldn't maintain a heartbeat if they tried. I could look at the fact that I have a degenerative disease and realize that the other alternative would be that upon a Feburary 2009 diagnosis, I could have only had 3 months to live, such as my dear friend Susan. Or, I can choose to live everyday in the present and be thankful for each day as I never know when the alternative will arrive. There is always an alternative. "Oh, I HAVE to wash these dishes." Or can you see it as "I had food to put on my plate tonight, I am gifted the opportunity to eat, I'll happily do these dishes." There's always a choice in how we see things.

So- with this thought I realize I can also CHOOSE my actions, and maybe those actions will lead to less regrets. Regrets are hard. Today I had one. Today, when working my way through a task, clearly getting frustrated, I caught Juliana looking at me from the table in which she was making (another) card. After a few minutes she put everything down and came over and said "Here, I'll help you mommy." She didn't ask HOW she could help, IF she could help. She just said she was going to. I love her heart. I love that she didn't sit around and wonder if her little 6 year old idea was going to make a difference. She didn't realize that helping me once might not save me from the next time I was frustrated. She didn't calculate how helping me would interfere with her day and choose to invest in herself instead. She just said "I'll help you." Well, here is where my regret comes in. I said "No, honey, Mommy's fine. Go back to what you were doing."

Honestly, if I had to put money on it, I'd have to say that I saw disappointment in her. If I also had to put money on it, I'd say that her life will go on. BUT- since I'm the one who's got the million dollar job without a paycheck (homemaker) I really don't have money to put on anything. SO, tomorrow morning, when she's supposed to make her bed, I'll do it for her and tell her that I remembered when she was wanting to help me yesterday and I didn't let her. I really wished I did, and couldn't take back that time. So I wanted to do something nice for her to thank her for what she was willing to do for me and that I couldn't wait to have a spot in my day where I needed her help.

I believe there is beauty in our children seeing us as the humans that we are. I believe that allowing our children in on the little secret that "mommy and daddy don't have it all figured out" will allow them to learn in ways, intimate ways, how to be a responsible, empathetic human being- rather than just moving on and hoping they don't recall. I believe that their hearts and souls will grow faster than science ever documented and we'd better not waste a breath on anything but love towards them. I also believe that the "the school of hard knocks" will come knocking on our doors and deliver the bad news- that doesn't work.

Today, in my daughter, who I have a good 27 years on, I saw a person that I long to be. What a gift, what a blessing that she already is. She is exactly what she should be. And only life, society, adults can take that from her. Well, I can say this much- not on my watch.

"As you grow older, you'll find the only things you regret are the things you didn't do." -Zachary Scott

I can say that 98% of the time I either allow her help or ask for her help, especially when it's not needed- that's what the good stuff is made of. BUT, I regret that other 2%. I'm not perfect and many many things in life I don't get to CHOOSE. But, this I can choose- and will choose from here on out HER happiness, her desires, her heart- for I've been entrusted with it, at least for now.

Authenticity and Transparency

I continuously hear those words over and over in my head.  They ARE my words after all, I vowed to incorporate more of each in to my life.  If you've been following "me" for a while, you know that while looking for those two things in others, I found that I wanted more of that from MYSELF.

I've certainly been able to scratch out a few people, places and things based on the fact that I can't find EITHER of the two.  And that's okay.  Just as I've said all along "I am not for everyone."  It goes to say the opposite, "Everyone isn't for me."  Which for many of you you're sitting there staring at this page saying "Duh!!! You didn't know that?"  Well peeps, I didn't.  I've spent the majority of my years attempting failing at making everyone happy.  I didn't quite get the memo that at some point you'll be painfully aware that people don't like you and (the most important part) THAT'S OKAY!  I thought if I tried hard enough, met people where they were at, genuinely had interest in their lives, cared, shared and loved that the world, all of it! could be my friend.  Pfft!  It's just not that simple now, is it?

So, lately I've been investing a little time in ME.  My journey.  Oh wait, I didn't really have a path I followed, I just seemed to be drug, face down, down a path that LIFE chose for me.  I guess that's how I saw it for a looooong time.  It's been the last few years, maybe longer, that I realize this is all for SOMETHING.  My faith isn't a secret.  We know I am a big ol' lover of God.  And it's clear there is a plan for me.

However, without ME putting forth action, nothing will ever be revealed to me.  I've been led in a few directions, a few times. I've found things I've loved and subscribed to the theory that if you do something you love, you WILL be successful.  Maybe not in a financial/societal sense, but in your heart.  That's the good stuff.  I think my unwaivering pessimism doesn't allow me to "try something on for size", I'll decide "it won't work" before it ever starts.  Or, if I've started something, it seems it gets ripped from my hands before I know it.  I am not one for ripping back, I kinda believe in "What's meant to be will be..."  So, I've moved on.  

Anyone wonder what I am getting at? Ha me too!  All the time.

Anyhow....

I think I've figured it out.  I think I've figured out a way to incorporate a few loves, a few (minimal) talents, a need in the community into a service that is based on AUTHENTICITY and TRANSPARENCY and a few other kitschy words that we all love.

I think everyone needs a Susan. Do you have a Susan? I did, for about 5 years.  Not long enough, about 1/12 of the time I wanted to. My friend Susan started out as my "Mentor Mom".  I was part of M.O.M.S (Mothers of Multiples Society) and when my twins were born 16 weeks early they didn't send me just any ol' twin mom, they sent in Susan.  Susan had signed up to be a Mentor Mom to another twin/preemie mom.  I was her "first" mentoree.   Within 17 minutes of meeting I think we lost the titles and became simply, friends.  I'll never forget trying to tell her when she first contacted me "I was fine... I had a preemie before...I didn't need help, they were still in the hospital... call back when I get home with them."  LOL.  If you knew Susan you'd know that she could see through the crap and would call you on it.  "Girl, just knock that off, yes you do.  I am coming to the hospital tomorrow and meeting your babies and taking you to lunch." Uh, okay?  I remember seeing the NICU doors open and in marches my soon to be dear friend and what would later become my angel.

Susan met me where I was at.  She met me at the bottom of some deep dark holes, some of which I was thrown in to, some of which I dug myself.  And every time she met me there it wasn't to drag me out, it wasn't to solve the debacle.  It was to experience my heartaches, get a little dirty in the muck and then together, we'd figure out a way out.  She also met me when I lounged on and in the clouds of dreams and aspirations, even when they only made sense to me.  "Girl, do it!  Now.  If you don't, I am gonna bug you about it, a bunch."  And she did.  And oddly enough, even though she's been gone for almost a couple years, she still kinda does.  (Read more about the day I found out I lost my closest friend here).

Many a times Susan would call, I'd pick up the phone and say "Hey..." she'd interrupt with this line..."Girl!  You have to try ___________. It will change your life."  You could insert MANY things there.  A book, Sherwin Williams paint color, Puttenesca sauce...  She had a passion for experiences, anything that touched one of your senses or your heart.  I am the same way.  You might hear me around Snooze telling our guests to "... try the Red Velvet Pancake, it will change your life."  or at least palette for a few minutes.   I love to experience "LIFE".  Even if "life" is in the form of a yummy pancake.  I like experiences. I've walked the streets with a person who's lost themselves in the world of crack, prostitution and all that encompasses a life on the streets and listened to their stories.... and paid attention so I could figure out how to love them, in THEIR language.  That's life and those are experiences I wouldn't trade for the world.  There's a broad spectrum out there and it surely isn't a "One Size Fits All" world.

So, how am I taking these thoughts and dreams and making them come true?  Well, I am working out details, business plans, goals, ect.  But, I will say that without Susan I wouldn't have made it through the first few years with the twins.  Granted, I was a mom before the twins it's just that Brennon wrote the book on "How to be the perfect baby.".... (Update: He's making up for lost times and is now writing the book on "How to drive your parents crazy/Being a tween.")  And maybe I would have made it through those years, it's likely.  It just wouldn't have been as fun, eye opening, educating or pretty.  I want to be able to provide moms/families with the opportunity to find themselves or their new selves through mothering and parenting by way of education, health/wellness, fitness/nutrition, organization, environment "sprucing up" and physical (non-judgmental) support.  No "rescuing" here.  We're going into the trenches together and we're digging out together. Period.

Like I said, everyone needs a Susan.  

More details to follow.

(Thank you to Susan for the inspiration. Thank you to God for whispering in to my soul just when I needed You to.)