Friday, July 31, 2009

Summer over?

I was riding in the van with Bob and the girls. I said "It rains all the time, what happened to summer"

Ellie answered in a sing-song voice "it's over mommy"

Wednesday, July 29, 2009

Why does Lauren have Autism?

I have struggled with this and will struggle with this forever. I will never know why Lauren specifically has Autism. Why is it that out of 150 kids she couldn't have just been one of the 149? I will never know on this side of eternity. I may know of the other side but my hope is that I will be so busy worshipping, dancing, and signing that I won't care.

I can answer the question of why Lauren has Autism in a general sense. We live in a fallen world. Disease and disorder is all a part of the fallen world we live in. Autism is no exception.

The other reason is so that God may be glorified in all of this. It is He, and He alone, that gets the glory. A special needs child has made me cling to His promises like never before.

Bob and I find great comfort in this story from the New Testament (a paraphrase)

The Pharisees were questioning Jesus and asked about a blind man. They asked who sinned the man or his parents. Jesus replied "Neither, for this is done so that God may be glorified in this"

Monday, July 27, 2009

The fiery furnace

I became a Christ follower in 1995 when I was a freshman in college. I fell in love with the realness and simplicity of the Gospel.

One of the first stories I leared came from the Old Testment, from the book of Daniel. The story of Shadrack, Meschek, and a Abednego. It took me forever to learn to pronnounce these names (and I've never leared to spell them correctly). They were captured as teenagers and sent to Babylon. I'm going to skip some points to make a very, very short recap.

At one point the king insists that everyone bows down to him or a statue of him. I can't remember and I'm at work and can't look it up. They refuse. The pentaly of this refusal is being thrown in a firey furnance. This furnance was so hot that upon opening it, several guardsman died from the heat.

Before they are thrown in comes my favorite verse (emphasize mine) "The Lord our God will save us. But even if He chooses not to, we will not bow down to you". I love that verse. It is the "but even if he chooses not to" that gets me everytime.

I know beyond a shadow of a doubt that my Lord could heal Lauren instantly. Imagine it, her chromosomes would become "un-enhanced" IMMEDIATELY. I could toss out medication. I could shred her IEP. I could call her OT and neurologist and say that we were never coming back. It could happen because He who formed the universe could do that if He chooses so.

But chances are that is not going to happen. I still believe that it could but looking at our life I don't think it will. I think that God is healing Lauren on a slower level. I think that God is an ever present force in Lauren's life. I know that God loves in a way I cannot even begin to imagine but He has not choosen to heal her that way.

And you know what. It's OK. It's OK for one very, very important reason. He is God and I am not. I don't know the reason for this nor do I want to. It is too much for my finite mind to handle. However, I know that God is infinite and Lauren is part of His greater plan. Maybe part of the miraculous healing of Lauren is manifested in my newer found belief that He is God and I am not.

Monday, July 20, 2009

New swing

They had this swing at OT that Lauren loved. It was very expensive because if you slap the words special needs in front of anything you can raise the price by at least 300%. Here is our Ikea version, it's under $40

Wednesday, July 15, 2009

9 years ago today

I stood and made the biggest commitment I ever have or I ever will. I committed to Bob and to God that I would love and honor Bob forever. I was so nervous, I couldn't imagiene how I would keep a promise for the rest of my life when I was only 23.

But I have and I will. It's never been easy but it's always been worth it.

I hope to writing about our 50th anniversary.

Tuesday, July 14, 2009

Just for a moment

I was looking at Lauren the other day and was transfixed by her. She's a wonderful kid that I wouldn't trade for 100 other kids but life with her is hard. Really hard. Just for that moment I thought about what life would have been like if she hadn't been born with "enhanced" chromosomes.

I would still have very little idea what an OT does. (My best friend is an OT but it wasn't until Lauren that I got what she did).

I wouldn't be up for the day at 1:00 am because she can't sleep.

If I had a question about development, I could go to a child development book and have some point of reference.

I wouldn't have to translate Laurenese to English.

I could just send her on to 1st grade without agonizing over that decision.

I wouldn't have to go to MFE/IEP meetings.

Bob wouldn't be driving her to summer school this week.

I would lack the compassion that I now have. I never assume that a child throwing a temper tantrum is just being a "brat". I realize that just like the world doesn't know my entire story, I don't know the world's story.

I wouldn't be able to fight the insurance company like my life depends on it because in many ways it does.

I wouldn't be able to "fire" a doctor who is not a good match for us.

I would still be assuming that special needs kids happen to "other" people.

I would be watching Lauren read and write.

I could relax at Girl Scouts, playing with other kids, interacting with other kids. I have this constant need to explain Lauren so people don't think I'm a bad mom.

I wouldn't rejoice that my other kids did something; I would be fixated on when they did it.

I wouldn't agonize over my choice of drugs for Lauren. It never fails to shock me that I was giving my child a narcotic at 4 years old. I would do it again in a heartbeat.

I wouldn't have a 6 year old that bites her sister.

I would be able to think of her future in a clear linear path. She'll graduate, go to college, get married. Now I wonder if she'll be 30 years old living with me. Is a group home our biggest goal?

I wouldn't have met so many fascinating people in this community of special needs.

I would be able to let Lauren go to a birthday party without panicking.

I wouldn't have the compassionate girl I have.

Just for a moment, I look and I wonder. I've come to accept and love the life I have but just for a moment, I wonder about the life I might have had.

Saturday, July 11, 2009

New cars

We have no plans to get a new or new to us car any time soon. Ellie has different ideas though.

I will get a green car.
Bob will get a blue car.
Lauren will get a pink car.
Ellie will get a purple car.
Shannon will get an orange car.

Anyone care to guess what our favorite colors are?

Friday, July 10, 2009

The great boyfriend debate

Lauren sings "Ellie got a boyfriend. His name is Josh"

Ellie shouts "His name is Josuha. He not my boyfriend"

Who is right? Time will tell.

Thursday, July 9, 2009

Special Girl

It's a special girl to have an entire village named after her at only 2 years old.

Monday, July 6, 2009

Paid in Full

I opened the mail today because it's one of my many jobs here. I'm also the only one capable of doing something with the mail rather than just tossing it around.

I looked at a statement that I never thought I would see.

Lauren's last neurologist appointment, paid in full.

Lauren's micro array charege was $4195. The insurance paid for $2300. That is considered paid in full.

I never thought I would see the day. It's still all about the diagnosis.

Saturday, July 4, 2009

Friday, July 3, 2009

Trip to the zoo

I think we spend more time doing other things at the zoo then actually seeing animals.

An actual animal!