Camp Picture...WAY Too many of them!

This summer we got to go to CAMP EXPERIENCE as a family. It's a camp through the Division for Blind Services. They allow families with special needs children to go to the camp so everyone can "experience" camp. We've been invited each year, but this was the first time Miles was well enough/I was brave enough to go. I really didn't know what to expect, but it turned out to be so much fun. Honestly, I wasn't even ready to come home after a week of being there. We had our own 13 bed cabin. : ) There was a ton to do at the camp. We were free to do all of it or none of it. We ended up doing almost everything available. They had a Zip Line, Rock Climbing Wall, Crafts, Swimming every afternoon, Slime Olympics, Horse Back Riding, Petting Zoo...and several other things. We had a ton to do, but it was also relaxing. The whole camp was totally free for us which was a total blessing. I should also mention that Randy was in a "Womanless Beauty Pageant" on the last day of camp. I'm disappointed that I didn't get a "before" shot when he had all his gear on A.K.A his boobs. Also, he has on shorts in this picture. He was showing quite a bit of leg in the "before." I didn't get a good shot of him while he was in the Pageant because I was laughing so hard I was crying!
Anyway, we had an amazing time. The camp goes on every year. I'm already looking forward to next year! (Tons of photos to look at.)

Day of Firsts

Today was a day of “Firsts.”

Joey had his first day of 7th grade.

Jocie had her first day of 3rd grade. It also was her first day of being in a combined class.

Melody had her first day of 2nd grade. Also, it was her first day to go to school without her “Bubba” being there.

It was Spencer’s first day of Home School. It was also my first day to teach Home School. We had a great day together. I think the 5th grade is going to be a lot of fun for us both.

As exciting as all those things are, there’s been one thing that has made my heart heavy today. Today would have been Miles’ first day of Kindergarten. I still can’t believe he’s not healed yet. Obviously every day isn’t devastating, but days like today make my heart feel tender and my eyes easy to tear up. Of course it doesn’t help much that Miles has been sick for quite a while now and that the last two mornings he’s woken up with a blood-covered face. He’s been having bad nosebleeds so it’s been very sad in the mornings.

Today when I went to pick up the kids from school I saw Ginny picking up Austin. Ginny and I were pregnant at the same time. There were actually five us that were pregnant at the same time: Francesca, Ginny, Me, Becky & Kristy. All of those “babies” are now in Kindergarten or Pre-K. Well, except Miles.

I haven’t cried about it yet. I’ve felt like it all day, but I’ve been busy with everyone else’s “Firsts.”

Lord, please…

An Oldie But a Goodie

I was talking to Jennifer today and I remembered this story that I wrote a long time ago. I thought I would repost it today.



Stinky Easy Mac!
Today my Mother In Law came over to let me rest this morning since we didn't get in from Six Flags until 2:00 this morning. She had the great idea to make the kids pancakes. (Us and our great ideas!) Well, she gets in the house with a mission to make pancakes, but the kids have other plans for Grandma! They wanted to tell her about every detail of their trip. Joey was going down the list of rides the he rode and the list of rides that he will ride next time. Melody got down a blown glass hummingbird that Spencer got on his trip yesterday, broke it, and Spencer went in hysterics! He was crying so hard. At the same time everyone of them wanted to help make pancakes with Grandma. When I walked into the kitchen Joey had the hot glue gun fixing Spencer's hummingbird, and Spencer was insisting that he knew how to crack eggs. It is true that Spencer knows how to crack eggs. He smacks them on the counter real hard and they crack all over the place! So, that's what he did and he got grossed out at the egg all over his hand so he ran to the bathroom to throw up. Did I mention that the two little girls had the spice drawer opened and their fingers in the powdered sugar? They did.
So, with all that going on I decided it was time to go back to bed. :) I was in bed all snuggled up just about asleep when Shirley comes to my room panicked because she thought she couldn't get my stove turned off so it was smoking up the place. I got up out of bed and walked into the kitchen that was full of smoke. It was terrible! Everyone was coughing and choking. Melody had taken her orange juice and ran for cover and spilled it all over the floor.
Come to find out Grandma Shirley makes different pancakes then Mommy does. She makes whole wheat pancakes so they are brown. My kids didn't think brown pancakes were going to work out for them so they wouldn't eat them. The girls decided they wanted waffles, Spencer wanted Toaster Studel, and Joey wanted a box of Easy Mac that I got free at the store the other day. He insisted that he knew how to make the Easy Mac. Unfortunately, his Easy Mac skills are as great as Spencer's egg cracking skills!
Shirley had turned off my stove correctly. Joey had cooked a package of Easy Mac for three and a half minutes without using any water! Oh my goodness that macaroni was completely black! It was horrible. Smoke was every where! We had to open all the doors and some of the windows. Jocie kept saying, "It's in my throat!" I can still taste it. When Randy came home for lunch he had a strange face and asked, "What's cooking?" I think he was relieved that it wasn't his lunch in the making.
So, my house smells like crispy pancakes! So does everything that you cook in the microwave! Joey can't stop talking about it. He was glad that Miles was still asleep because he didn't think that Miles could have handled the smell.
My Mother-in-Law said that I probably wasn't going to let her come over any more after that episode. YEAH RIGHT! If she thinks that smoking up my kitchen one time is going to prevent me from letting her take care of my five children while I take a nap she's wrong! She's going to have to come up with something better than that! :)
The ending...Joey and Spencer came to my room and said that they were going to make a banner that read, "Easy Mac Stinks!" and sit in front of Wal-Mart with it. Comments like that make it all worth it!

One More Week!

WOW!

This day next week Spencer and I will begin our big adventure of Home Schooling!

I've got things ready.

I've got the supplies ready to go.

I'm excited and nervous. I really think this year of schooling has been set up by the Lord. I'm excited to see the "fruit" of Spencer and I getting to spend a year together while the other kids are at school.

I will be happy when I get used to the curriculum. Right now I feel like I'm trying to learn a whole new language. Still, I want to try and enjoy the fumbling while we get settled into a new routine.

The song I keep hearing in my head is "I have Confidence" from the Sound of Music. Most of it applies except for the 7 children thing...

What will this day be like? I wonder.
What will my future be? I wonder.
It could be so exciting to be out in the world, to be free
My heart should be wildly rejoicing
Oh, what's the matter with me?

I've always longed for adventure
To do the things I've never dared
And here I'm facing adventure
Then why am I so scared

A captain with seven children (Home Schooling someone who doesn't like getting up)
What's so fearsome about that?

Oh, I must stop these doubts, all these worries
If I don't I just know I'll turn back
I must dream of the things I am seeking
I am seeking the courage I lack

The courage to serve them with reliance
Face my mistakes without defiance
Show them I'm worthy
And while I show them
I'll show me

So, let them bring on all their problems (MATH)
I'll do better than my best
I have confidence they'll put me to the test
But I'll make them see I have confidence in me

Somehow I will impress them
I will be firm but kind
And all those children (Heaven bless them!)
They will look up to me

And mind me with each step I am more certain
Everything will turn out fine
I have confidence the world can all be mine
They'll have to agree I have confidence in me

I have confidence in sunshine
I have confidence in rain
I have confidence that spring will come again
Besides which you see I have confidence in me

Strength doesn't lie in numbers
Strength doesn't lie in wealth
Strength lies in nights of peaceful slumbers
When you wake up -- Wake Up!

It tells me all I trust I lead my heart to
All I trust becomes my own
I have confidence in confidence alone
(Oh help!)

I have confidence in confidence alone
Besides which you see I have confidence in me!



Okay, so I know that was Cheesy, but I'm Cheesy sometimes. : )

My Favorite Present Ever.

Today Spencer asked me what my favorite gift that Randy ever bought me was.

When I turned 30 he gave me my FAVORITE gift ever!

He took me to our bedroom and told me to open up one of my dresser drawers. When I opened it up there was a $30 gift card to ROSS (my favorite place to buy clothes.) I was happy with that. THEN he told me to open another drawer. When I did there was a $30 gift card to HOBBY LOBBY. I was really happy with that. THEN he told me to open another drawer...by this time I had the biggest smile on my face! With each drawer there was a $30 gift card to one of my favorite places. Every time I opened another drawer I was sure that it would be the last one, but he would tell me again to open another drawer! it ended up being $300 worth of gift cards to places all over town.

I was shaking by the end of it. I couldn't contain my excitement. I was so thrilled.

I love gift cards because it just feels like free money. : ) I had gift cards for a long time because I spread out the spending.

Anyway, I just thought I would share that since I remembered it today.

Jocie & Spencer...the Continuing Saga

Jocie just came to me and handed me this note.

High Tech

In the last month Miles has had 4 doctor appointments to see different doctors. 2 have been here in town, one in Ft. Worth and the latest one was here in town with a Dr. from Ft. Worth in the Cook Hospital clinic we have on Ambler.

All 4 offices are in the process of going “paperless.” There’s no more charts at the door, checking insurance cards, prescription pads or check out sheets. They’ve all been replaced by lap tops and no eye contact.

The office visits are all longer as the nurses and doctors try to master the program. The visits are longer and more detailed, but less personal. Their eyes are glued to the computer for 96% of the time. I’m thinking it will get better in time when they’re used to working with the program more.

It’s so interesting because I’m getting to watch a new era in medicine take place. The Dr. from Ft. Worth was able to see what the Dr. in Abilene recently did and the notes that he put about Miles’ latest surgery and the complications. They’re all able to see what medicines he’s taking and have all the correct dosages. It’s all very impressive.

At the Cook clinic today I was in a room where they can do “web medicine.” (That’s my own term.) In that room a Dr. from anywhere can “see” you through the web cam. It’s a live feed. There are attachments where the Dr. can see in the ears and throat. They also have some kind of sensor machine where the Dr. can see a certain part of skin up so close you can count the pores in the skin. It’s all very amazing. I snapped a picture for ya.

Tough Day

I was doing the catheter on Miles and all the sudden panic filled my heart.

I’ve done the catheter a lot of times up to this point. Since our last pediatric urologist appointment we’ve been told that we need to do it twice a day. It’s still a little strange that I stick a tube up Miles’ “private part” so he can pee, but it’s becoming routine.

Still, when I was doing it today something came over me. I thought, “Oh my gosh, I’m peeing for him.” He’s now to the point where he will rarely pee on his own. His body has just stopped doing it. His bladder just keeps getting more and more stretched out to the point that it causes pain. When he does pee he only empties his bladder about half way. I have a CUVG to prove it.

Anyway, it’s not the catheter that freaked me out. It was the fact that this is one more thing that Miles can’t do. Then the flood of questions comes crashing back to me:
HOW DID THIS HAPPEN?
HOW FAR IS TOO FAR?
HOW LONG WILL ALL THIS CONTINUE?
HOW MUCH MORE WILL MILES NOT BE ABLE TO DO?
HOW MUCH MORE IS THERE NOT TO BE ABLE TO DO ON HIS OWN?

He can’t sit up, talk, walk, or go to the bathroom. He can’t have clear lungs without 6 breathing treatment medicines a day. His body convulses without seizure medication. His body goes into withdrawals if he’s even 3 hours late on getting his meds. He can’t move his arms or legs without Botox or his Baclofen pump. He can’t swallow even the smallest amount of water while brushing his teeth without choking for 5 minutes and turning colors. He can’t feed himself. He can’t even eat food or drink liquids. He can’t poop without a daily laxative and an enema. Now he can’t pee.

What is left?

Breath.

That’s all I can think of at this point.

He’s like a baby, an infant. For over 5 years I’ve taken care of an infant.

How far is too far? I never thought we would have to go as far as we have. I mourned when he had to get to feeding tube. It was The Thing I didn’t want him to have to get. I wanted him to be able to eat like a normal person. He enjoyed it until he couldn’t do it any longer. Eating by mouth was physically killing him. He was constantly aspirating into his lungs, which caused the continuous pneumonias.

Oh, I really don’t have a point here. My heart just feels heavy today.

I don’t understand how a few minutes in time without oxygen could change our lives so drastically.

eBay Stuff

Here's a FEW of the things I've sold on eBay lately.

Poor Cookie Monster

I cracked up when I saw this. : )

My Dream

I had a dream last night that was wonderful and devastating at the same time. Once I had the dream I thought about it all night. In the rest of my dreams I was describing the first dream to friends of mine. I also was also dreaming about when I woke up how I would feel disappointed about it only being a dream. Did that make sense?

In my dream Miles was healed. I haven’t had a dream about that in so long. It’s probably been years, and I’ve never had a dream about him being healed the way he was in my dream last night.

It was awesome. In my dream we had all just woken up. Everything in my dream was normal (which is rare for me.) Anyway, I had just woken up and I went to get Miles up for the day. He was laying down and looked like himself, but there was something new in his eyes. His eyes looked alive. There was Life in his eyes. He began to move around just a tiny bit. I could tell that he knew me and that he was trying to reach out to me.

Randy was beside me and I told him that I thought Miles was trying to reach for things. I told him to get one of the rattle toys that I had saved back from our other kids so I could see if he could grab it. (He’s never done this in real life.) Randy picked out a small yellow rattle from the box that I remember our other kids playing with and I held it out to Miles and so slowly he reached out and was able to grasp it. Then I waited to see if he would put the rattle in his mouth. When he did I was overjoyed! I remember telling Randy that if he could have control of his hand then at the very least he would eventually be able to control his own wheelchair and that if he could do that then he would be able to go to college and that everything would be okay. (I didn’t know I valued college so much.)

We were so excited to see such a small yet huge milestone! Then it was like a montage of milestones that happened throughout the day. We saw him crawling and getting under the bed to get to the box of toys for himself. Then we saw him running through the house. I remember I was face down crying before the Lord. Spencer was playing with Miles and wanted to show him everything all at once. Then I had a flash forward to very late in the night and my eyes were bloodshot and burning and I was exhausted but none of us wanted to go to sleep because we were afraid that Miles wouldn’t be able to do anything in the morning.

That was the end of the first dream. The rest of the dreams were me replaying the first dream and talking about the first dream and mourning the first dream. Even right now as I write this down my heart is physically hurting and it feels heavy in my chest. I feel Closter phobic at the reality that I can’t do one single thing to make that first dream come true. I can’t make it happen on my own. I can’t earn enough money to fix Miles. I can’t pray enough, worship enough, give enough away, serve the church enough or fast enough. There’s nothing in my own strength that can heal my son. The word frustrating doesn’t cover it.

Of course if God does ever heal Miles there will not be any way that I can take credit for any of it. That part is awesome, but being on the other side of healed makes that fact painful to my mother’s heart.

In my dream I was so excited because I was going to get to know Miles. Strangely I was excited about all the work I wasn’t going to have to do anymore. I was excited about getting to have a real relationship with my son. I was going to get to know him and he was going to get to know me and all his brothers and sisters and Poppa. That’s what I long for. That’s what I desire. I want to know Miles and I want him to know me.

Really? Who's Idea Was That?

I remembered something today.

Something Funny yet so not funny at the same time.

Way Way WAY back in the day...like before Randy and I could could even legally buy alcohol although we often had some, for some crazy reason we thought it would be fun to go to the movies, sneak in some booze and get blasted while we watched a movie. We walked there so we wouldn't have to drive. We used to live in an apartment close to a dollar theatre that used to be on the hill.

Anyway, we snuck in something to drink...it was cheap I'm sure, and we bought tickets for When a Man Loves a Woman. We didn't know anything about the movie, but it had Meg Ryan in it so we were sure it was going to be good.

However, a few minutes into the movies (and a few swigs later) we began to rethink our movie selection.

I don't know if you remember the movie or not, but Meg Ryan plays an alcoholic!!!

We watched a few more minutes of the depressing movie and then got out of there! We laughed so hard at the irony.

I don't know what made me think of that today. It wasn't because I was contemplating getting tanked at the movies.

Oh, I'm so thankful for how far we've come. : )

Anyway, we never did see the rest of the movie.

There's No Place Like Home!

There’s No Place Like Home
It’s almost been a year since we stopped going to Kingdom Life Fellowship. We went to church there for over 10 years. It’s been such a huge adjustment. We spent last summer alternating between two great churches to try and find where we were supposed to be. We decided on Morning Star Community church. There’s so many wonderful things about this church body. I’m very glad that we go there and serve there. I love that it takes 3 minutes to get there. I love that it’s a multicultural church. I’ve grown so much from that single thing. I love who the pastors are and what they’re about. I really love the people. There’s so much more that makes it an awesome place to be a part of.

All that being said…and meant…I’ve really been struggling with FEELING HOME SICK. I do. I can’t help it. It started about a month ago and has just gotten stronger. I miss our old church. I’ve missed it the whole time. I’ve gone through seasons where I didn’t think about it too much, and a little while where I thought I was over it, but I’m not. I still love everyone so much. I miss being a big part of their lives. I miss going and knowing everyone. I miss their connection to our family. I miss the feeling of the fact that they know everything about Miles and how they’ve prayed for him for years. I like that many of them have seen me in my darkest valley and my highest high. I love that most of my kids have gone to church with a lot of their kids since they were born. I miss the music. I cannot tell you how much I miss the music. I miss the encouragement from people who have seen me walk through tragic times and come out peaceful on the other side. I miss how they call greatness out of you. I miss having deep relationships with almost every family. I miss watching the other kids grow up that I’ve known for so long. I miss the feeling of being a part of something that’s bigger than just a Sunday morning meeting. I miss the “everyday” living that the people do so well. I miss going over to people’s house during the day and hanging out or going out together at the spur of the moment. I miss the Pastor. I miss going to church with my best friends. I miss the community of the place. I even miss Clyde.

When I go back there for a special occasion I feel like an out of towl relative. I’m always welcomed so lovingly. I’ve gone back to a Halloween festival, a women’s guest speaker, a Christmas program and a funeral. Each time I realize again what I’m missing and it hurts.

I’m not saying that I want to go back. I’m not saying that I don’t like where I am. I’m not saying the place I’m at now won’t turn into more. I’m just saying that I feel Home Sick. Lately I’ve been having this mental picture of me gathering my things and dragging them behind me while I walk down Hwy 18 to get to Clyde. Then days like yesterday when we went to our church picnic I fall in love with the people of Grace Point (name changed) even more.

I don’t know what to do about it. I don’t know that there is anything to do about it. It’s true though, There’s No Place Like Home.