Monday, June 28, 2010

Welcome to "Our Special Needs Life"

Update: I have decided to re-post this welcome message because it says so much about what the purpose of starting this blog was in the first place.

Original Post:
Our family life began with Ken and Lori. We were married and started our journey together in August 1996. Our first daughter, Megan was born in October 1999 weighing in at 7 lbs. 5 1/2 oz. Our second daughter, Monica, was born in May 2001 weighing in at 8 lbs. 9 oz. We were excited to have our two girls born close together so that they could become close friends and enjoy one another throughout their lives. However, shortly after our second daughter Monica was born, we began to realize that some red flags that we raised concerning Megan's development would highly impact our family's daily life as well as how we each relate to each other, the world, and to God.

Our plans for living our lives "the right way" with two amazingly well-behaved girls (effortlessly, of course), loving our jobs, providing a nice home, and seamlessly pacing through all the major stages of life together - CHANGED FOREVER!

The more we learned about our daughter's condition, the more our lives instantly changed until we had no choice to simply put everything we trusted in completely over to God. It seemed that no aspects of our lives were safe from the effects of our daughter's illness. When you have a child with a serious illness, the whole way you think, live, and breathe is different. You view the world from a completely different perspective. And, some days, it feels like the world also views your family from a completely different perspective.

Our prayer is for that everyone who reads the words on our site may be encouraged, uplifted, amused, informed, and delighted all to the Glory of God who made us, with no mistakes! It is only by His grace that we all get up every day, face the challenges that come with pride, and live as a steward of His love to the rest of the world. For our success is not in what we accomplish throughout our lives but how we go about our lives being thankful for everything we are given and teaching others to praise amidst whatever circumstances may present.

Please enjoy our thoughts, antics, advice, information, and family history knowing that we are taking this journey together, one step at a time. We LOVE to hear comments, stories, suggestions, clarifications, and situational humor from our readers who consider themselves "Special Needs Families" as well.

Reflection:
When I was a young girl and we would go to my Grandparents house, there was quite a lot of "Jesus" and "church" talk. My Dad was a minister and my Grandparents were mature Christians. I would remember listening to them talk about concepts, religion in general, or songs that they loved. I can still hear my Grandfather's voice saying, "That's a hard one!" I always thought, "it's just a song!"

Now, I get it. It's not just a song, verse, saying, or quote. It's so much more. It's a feeling that creates so many thoughts and ways to analyze how to bring glory to the God who made us and gave so much for us so that the things that we go through in our lives don't have to be so painful forever!

When I wrote this paragraph on May 7, 2009, I had no idea that this blog would become the documentation of the end of a wonderful life as well as a great source of encouragement and support for our family.

"Our prayer is for that everyone who reads the words on our site may be encouraged, uplifted, amused, informed, and delighted all to the Glory of God who made us, with no mistakes! It is only by His grace that we all get up every day, face the challenges that come with pride, and live as a steward of His love to the rest of the world. For our success is not in what we accomplish throughout our lives but how we go about our lives being thankful for everything we are given and teaching others to praise amidst whatever circumstances may present."

(Now, that's a hard one to live by, especially considering what has transpired with our family since then. But still very true. We are doing our best to believe that there was no mistake and to keep praising in the midst of these very emotional times.)

I have decided to continue the initial purpose of this blog by telling more of Megan's story in an effort to encourage those going through similar journeys.

Friday, June 25, 2010

I almost....

decided to delete this blog. I have had a MAJOR case of blogger's block. I could think of things to say. But when I started typing - I didn't like how I did it, the words I used, my thoughts about the topic, etc. So, I never saved or published them.

I almost let my internal negative self-talk beat me down into thinking, "why bother?" anymore. The point in the beginning was to journal our life with a special needs child. But, what happened was, that life ended. Our daily lives look nothing like they did before.

Instead of deleting this blog - I started doing some reading. I got a grasp on thinking things through rationally. I learned a way of planning which direction I want to go.

Initially, I wanted to help others through my experiences when I started this blog. And, because I was just posting with my instincts and not really planning the direction I was headed, I stalled when I internally told myself that having this blog didn't make sense anymore - especially when I started reading through my blog. I hadn't read many of the posts since I published them.

I am trying to shut that thinking down. It has been a huge process for me. I have had a lot of thoughts while I have been working lately, trying to make sense of applying the information I learned to who I am and how I want to portray living a "special needs life". I am still planning and trying to make sense of everything going on in my head so that it comes out coherently.

I still want this to be a place to celebrate the special lives that have touched us, to find resources for living, and keep hoping for our future.

Saturday, June 19, 2010

Take me out...

to the ball game.



Take me out with the crowd.



Buy me some peanuts



and cracker jacks.



Monica didn't care if she ever got back, but I caught her root, root, rooting for the Cubbies! (between her bites of this)




If they didn't win, it (our view) would be a shame.




But it was 1, 2, 3 strikes they were out


- at this great ball game YEAAAA!!!!!


Thursday, June 17, 2010

We're here today! YAY!!!!!



We are so excited - except for Monica, but she doesn't know just how fun it is going to be!

We are praying for a nice day to sit at the ball park and enjoy the company of thousands of people all hoping for the same outcome!

I'll let you all know how much fun it really was tomorrow!

Friday, June 4, 2010

I'm still here...

I have planned a dozen posts in the last two weeks.
None of them were ever photographed, edited, or typed out.
I am tiring of posting about loss.
I want to seem upbeat and not a downer.
My posts keep getting mixed between up and down and I'm worried about seeming bipolar.
I have information about living with special needs and how we did it.
I don't want others to think I don't know what I'm talking about because I don't have a special needs child anymore.
We are supposed to be normal now.
We do everything like we're supposed to now.
I don't always pick the "way of the ramp" anymore.
I look like the mom of a 9 year old child.
But, I don't feel like a normal mom of just one child - because I'm not.