Stream of consciousness

I am going to try this blogging method today because I don't have a ready topic right now but want to say something to my lovely readers. I don't like it when I don't say anything for a week or longer.

I have been pretty busy. Running an online store, attending the flea market 2 days a week, keeping up with inventory for both, trying to design a new line of girl/doll clothes, and redesigning my website are HUGE time swallowers!

We did have a chance to take Monica to the fair on Thursday and had a lot of fun. She rode her first non-kid sized ferris wheel, had her hair sprayed pink like Pinky Dinky Doo, and won a gold fish at one of the games.

Me? I found a sewing store vendor at the exhibition booth and fell in love with the serger I have only heard about and think about in my dreams. It did not disappoint! Now, I am completely re-prioritizing my business cash flow to include this machine much sooner so that I can start designing new, more professionally looking KNITWEAR myself and not buying them from other vendors to re-sell. Yes, I know I am crazy about this. I also know knitwear is not known for being an easy medium for sewists. I can't wait to tackle it though, LOL!

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Dear Megan,

I miss you, girlie! Whenever I start to think about you, my heart smiles...then I think about what you must be doing right now. I can't wrap my mind around the place where you are, what that place looks like, how differently you look, what you are thinking about, and if you are thinking of Daddy, Monica, and I waiting to see you again.

When I hear someone speak of Heaven, I think of you. When I hear songs about praising Jesus, I wonder what it feels like to you to actually be there. I can't fathom the emotions that you must feel surrounded by everyone there. It makes my heart smile, and glad that Jesus made a way for us to know and see one another again when I get there too.

Then, I start to think about how long it may be before that takes place and I feel my eyes getting moist and start to wipe the tears. I am not sorry that you don't have to live in a body that doesn't work anymore. I don't know how you did it with such a pleasant attitude - I don't think I could have lived in your body and still smiled most days.

I just want you to know that I miss you and can't wait to see you again. You are in my thoughts every. single. day.

Love,
Mommy

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Praying for Peace and Health

I have a close friend who is expecting her third baby in early August. Her baby is very active and appears healthy. However, she is worried about the baby's position while preparing for the labor process.

She has prayed for me unceasingly and I would like to offer the same back to her as well as make everyone aware that she needs peace and continued health for both of them as the delivery approaches.

"Lord, touch my friend and her baby. Calm the nerves and bring your peace to her home so that her family may enjoy one another as they await their newest family member's arrival to their arms. Amen."

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Application

Our youth ministries pastor spoke yesterday's message at church. His message centered around this verse:

Hebrews 13:5 (NIV)
Keep your lives free from the love of money and be content with what you have, because God has said,
"Never will I leave you;
never will I forsake you."

Even in the midst of circumstances we don't understand, He has not left us. We can choose to let our feelings get the better of us. Or, we can run and jump into the arms of the One who can carry us.

What circumstances in your life make you want to run to Jesus arms and stay there?

Are they the ones for which you are waiting?

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Are you waiting?

Going through a season of waiting is really hard. I remember waiting for an answer I just knew I was going to get from God. But, it seemed like He had forgotten that I was still there asking. It felt, at times, like He just left me hanging there.

When we got married in 1996, Ken and I had a plan for our careers, how to raise our children, and live our life together. However, we were handed a different plan. We weren't given all the pieces to the plan at once either. We weren't sure where exactly the plan would lead us or what the outcome was going to be.

When you are given a new plan with no real details, there's the temptation to start to "fix" situations yourself when you are waiting for the details to be revealed. I have thought to myself many times, "Maybe it is something I am supposed to be doing that will help." However, many times, the more I tried to "fix" things myself, I found myself in a deeper mess.

I remember praying so many times, "God, just help me find the lesson here so I can learn it and my problem(s) will go away!" Throughout my waiting process, I learned something about looking for answers.

Sometimes God is preparing someone else to be involved in our plan.
God knows we need help and sometimes He is lining up the important players to be involved in our life or situation. This takes time and we can't always see what is going on until the day the door opens. Then, more details of the plan are revealed in a way that is practical and makes sense.

Sometimes God is working in us to change our motives.
Have you ever thought about why you are asking for what you want? Are there any other people involved? Are you asking about something only for yourself? Are you asking for your pleasure or convenience? Are you giving God a deadline? Are you asking to be rescued from your situation? What is at the root of your request? James 4:3 says, "When you ask, you do not receive, because you ask with wrong motives, that you may spend what you get on your pleasures."

Sometimes God is waiting on us to figure out that we want something totally different instead - something better.
Have you ever waited for something long enough to change your mind? You aren't even interested in that request any more. Or, you may find a way of fine tuning that request and found that you hadn't thought through the first request well enough. Is the request a real need?

Sometimes our problem is not totally about us!
You may be going through your circumstance so that others around you may benefit from the way you handle things. Is there anything you have finished where sharing the process might be helpful to others? Can you encourage them?

Sometimes God is asking us to trust Him.
When our request really is worthy, waiting enhances the gift of the request being answered! God wants to give us the desires of our hearts. Are we trusting Him to come through for us at His perfect time in our lives? Are we trusting Him to show us another way that is better than we originally planned?

Sometimes God just wants to see us persevere.
You know, a character building thing. Romans 5:3b-4 says, "because we know that suffering produces perseverance; perseverance, character; and character, hope."

What is the hope for? I am glad you asked!

James 1:12 says "Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him."

My Hope is in this promise. So, then, God, can my crown be made solely of diamonds? Unless, of course, You have something better than diamonds in Heaven!

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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.

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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.

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