Tuesday, March 31, 2009

By the Grace of God

You hear people say that, and they don't always really mean it. They might mean oh that was close or any other thing. I truly saw that today, God's grace. Because without that Mike's Uncle Jerry would have died today.

It started out ok enough. I went for a haircut. Which is a huge deal in my life. I have to plan for that and usually talk myself out of it for one reason or another. But I'd hacked off the top of my hair two weeks ago and my choice was to continue to layer it myself or get help. So I choose help. I took Zachery with me and was thinking we'd stop at Sonic on the way home. But things were going good and I decided I had a hankering for a cherry limeade on the way so we went before.

The haircut was great. I could have gone to sleep. On the way home I was going to stop at Walmart for a few things. I was actually looking at Walmart and decided I'd turn the other way and just go home. I don't get out much so that's huge for me. lol Walmart is the biggest thing out here.

I'd only been home a few minutes. I'd put some chicken in the micro to thaw out and sat down on the couch to pop on facebook. I heard the dogs start barking and told Zachery to look out the door to see if anyone was here. As he walked outside Mike, who was sleeping, hollered that someone was here. Well, I'd just sent my four year old out to great whoever that was and thought it best to not bother with shoes and to just get out there.

It was a neighbor, Johnny. As I walked to his truck, he said, "some thing's wrong with Jerry." I said I'd go right over. Uncle Jerry is diabetic and has stage 4 renal failure. Aunt Linda called me the day before to let me know she had to go watch the grand babies from Tuesday till Thursday. I ran in the house yelled at Mike it was his uncle and for him to watch Zachery I had to go.

I drove next door and ran into the house. Let me just say nothing in my life had prepared me for what I found. Uncle Jerry was on the floor, screaming, seizing, thrashing about and alternately begging for help and telling me he was going trying to take a nap. I was pretty sure it was his blood sugar but didn't know was it too high? Too low? I knew I needed help and went to call 911. I had no idea where the phone was. I've been in the house tons of times but evidently hadn't made any phone calls. I found the phone and made the call. Ok I need an ambulance. What's your address. Huh? Well I know my address and I live next door so lets start with that. No you can't see the house from the road. I'm sending Johnny to the highway he's going to flag them down. Meanwhile uncle Jerry is knocking over things with his screaming and thrashing. He's beating his head on the back door. Now this I have been prepared for. Zachery has been a headbanger for years, so I'm thinking it's genetic.

I give the emergency responders directions. Tell them to go 1.5 miles, turn right at the first drive past the red barn. Remember which way is West and North and am feeling pretty good about that. Ok so bye then, oh do you have an ETA? No but they'll be there soon as they can. Ok.

I'm still talking to him. Uncle Jerry I'm going to help you. It's ok Uncle Jerry. Do you know where you blood sugar tester is Uncle Jerry? Ok run to the bedrooms. Look all over. Search the fridge. He needs something, what do I do. If it's too high and I give him sugar will I make it worse? If he needs the sugar and I don't give it, will he die? So I grab orange juice. I've seen Steal Magnolias right?

Let me just say it's not easy to get someone to drink juice as they are thrashing and screaming on the floor. I gave him some, then the head banging started. Ok I'm standing there and looking and all I can do is call, Jesus. "Jesus, help me! Tell me what to do. Help him." "Jesus!" And Uncle Jerry starts singing. Now first let me say there are a lot of dogs. Like I don't know 8 and a large bird. So he's thrashing, and moaning and yelling and the dogs are barking and running and the bird is swaking and here I am calling out to God. And Uncle Jerry starts singing. So I start to sing. The only song I can think of that I know the words to is Amazing Grace. So I start singing. Uncle Jerry sings with me. The dogs stop barking the bird starts singing. Uncle Jerry is laying on the floor but he's calm now. He keeps up for the first 2 viruses. I sing 4 and start with the fifth. Uncle Jerry is calm. I reach down and rub his arm and talk to him. I realize the little bit of oj I got into him has helped. He's not thrashing. So I grab the bottle, life his head and get the rest of it in him.

It wasn't too long and the ambulance got there. They got an iv started and got his blood sugar up. I made him a sandwich and got him some milk. He made it, we made it. He refused transport to the hospital but called his Dr. It was amazing to watch him come back to himself. But he'd been alone out in the garage. Aunt Linda had only been gone a couple of hours. She'd taken his lunch to him and he waited too long to eat it. Johnny got there at the right time. If he didn't just stop by for a visit, well that would have been it. If I'd, gone to Walmart, I wouldn't have been there.

So today I saw God's Grace. I saw how he helped Jerry by putting people in place when he needed them. I was clueless and felt him lead me. I know Johnny was clueless and we were both scared out of our minds. But it was ok, we were enough for God to work with.

Sunday, March 29, 2009

The Love Dare

I have finally started The Love Dare. I had planned on starting for Lent but it didn't quite happen. I'm on day four. So far I feel like I have already grown. Part of what has amazed me is how much of this I can apply to my children.

Day one, love is patient. Ok not easy for me. I am not a patient person. I will say I am more patient today than I was a week ago. One thing that I underlined and found inspiring was this quote; "Patients is where love meets wisdom." The books talks about love being built on two pillars; patience and kindness and that everything else is an extension of these two things.

It talks about anger being the opposite of patients. Wow, not that's a big one right. I'm not angry, right? So I think, and I pray, am I? Am I angry? I'm not patient and if one isn't patient than aren't you the opposite of patient? And if anger is the opposite of patients than yikes am I angry? Then I read, "Anger is usually caused when the strong desire for something is mixed with disappointment and grief." Ouch, I mean serious ouch! So huh, I mean I have to read that a few times. Ok sever times because I'm letting that in. I'm absorbing it and becoming aware. Anger is usually caused when the strong desire for something is mixed with disappointment and grief. That defines much of my life. How sad is that? How sad is it that I think that?

Ok so I ask myself what are the desires of my life. That's easy; my family. The desire of my life has always been to have a husband and children. To have a home and family. There is a lot of family missing in my life. I have always had dreams of days, events, dinners, just every day things with lots of family. That is just not meant to be. Mike and I have a good marriage. I mean it's been almost 18 years and there have been times that have been hard but I have always known we are in this together and he is my rock. That is why I am doing this. Why this book, why now. Because things are good, really good.

Kids, oh did I want kids. My dream was to have 3 boys and then a girl. Now Mike made it clear from day one he wanted two and they should be boys. lol Girls just scare him. I guess I should say the thought of daughters scares him. So I thought about this desire of my heart and know that it is mixed with both disappointment and grief. As much joy as I feel for Avery, there is still pain. And is that pain anger? Yes it is. Not anger at him but anger at what happened to him. So I prayed. I mean seriously what else is there to do. I do not want to be angry. I do not want to feel pain about my child. I do not want that pain to effect all the other parts of my life, so I pray. I asked God to give me peace. I gave up the anger to Him. I lay it at his feet, I don't want it. I only want what is of Him. He did not give me anger, he gave me patients. I chose the anger.

So what a wonderful few days it has been. Not to be angry, but to be patient. Avery is the one who needs the most patience but he is the one I show the least with. There really can be a gap from when I ask him something to when he answers it. And me trying to hurry that only makes it longer.

I love my family, my boys. And I want to be the best mom the best wife, the one God created for them. Being a wife and a mom is the best thing I have ever done. I am so very blessed that I get to be Mike's wife and Avery and Zachery's mom. So I put away all that I have lost the babies gone too quickly, the family too far, the people who are missing. And I am working on my pillars so that all of my love can shine through.

There is a part of me that doesn't want to post this. I fear that it looks like, I didn't like Avery or I was mad at him or any of those negative things. But I know that you that know me, know how much I champion him. I really can't imagine our life any differently. Only sweeter.

Wednesday, March 25, 2009

Anyone Remember High School?

If you would have asked me this a few months ago, I would have had a completely different memory. I would have said oh yes, it was a lot of fun. I had lots of friends and really enjoyed it. Ok so I've been on facebook right? Well, since I have friended lots of people from high school I have started to remember the reality of it!

I honestly can't remember a more paranoid time in my life. Did everyone spend time wondering if anyone liked them? And if they looked ok? Did everyone compare everything about themselves to the rest of the class? Like I totally can't remember many teachers but I do remember most of my clothes. I mean getting ready for school was seriously painful. Every button perfectly put into place to look casually thrown on.

And for those of you who don't realize, yes I was a valley girl. Pink and green, collars up, OMG!, totally gag me with a spoon. Fur sure, fur real, totally. Do you not remember Nicholas Cage's chest hair shaved like an eagle? I still flip my hair. I know this because I just did it and it gave me a flash back.

There are huge parts of me that wonder what people really thought of me. But there are other parts that are just amazed that anyone even remembers me. Ok this is my blog right, so I have to admit one of the first high school people I friended was Jim Brown. I have tons of memories of conversations with him. Many outside his house. Well guess what? He deleted me and told a friend he really didn't even know who I was. Well, seriously ouch! So I got a little touchy for a while. Wondering if anyone even knew who I was, hell do I even know who I am?

I have found that yes people did know me. Wooo, what a relief. I mean I spend 6 years with some of these people, someone should know me!

I have learned that wow it's really easy to fall back into those old feelings of inadequacy again. I mean I have spent years saying if I had it to do all over again I'd be so much fun and just wouldn't worry about what people thought. Cause that's pretty much my life now. I have great friends but if you don't want to be my friend that's fine with me. I don't worry about fitting in or being invited to the right party. Hell I am the party. lol

I can honestly say I'm so very glad I don't have it to do over again. I do still say totally, like all the time! One thing I want to tell that Amy is that people who didn't like me or weren't my friend were the ones missing out. I'm a fun girl, some days funner that others. But more than that I care about people. And I wish I knew what I did have to offer and wouldn't have worried as much. I would tell me to just talk to people and let people know me. I would tell her to relax. Take a chill pill. Ok not really a pill cause I'm pretty sure I'd still be drug free. But I'd whisper in my ear that it really does all work out.

Tuesday, March 24, 2009

Zachery Needs Skin

I mean seriously I hear it all the time from him. I need skin, I love tummy skin! Zachery stopped nursing at 18 months. Evidently I hadn't explained my desire to nurse him to the age of two. But just because he didn't want to nurse did not mean he wanted to stop skin to skin contact. He frequently puts his hand or face on my tummy. When he sleeps his feet are usually on the small of my back. Because I prefer back skin to tummy skin.

So at four we have restrictions on when and where he can have my skin. I would prefer not to have my top pushed up in public. Tummy skin is only ok at bedtime but yes I do prefer back skin. Zachery's funny because the easiest way to get him to fall asleep is to put your hand on his tummy, with his belly button in the palm of your hand. He loves tummy to tummy skin. It's almost like he's trying to reconnect us again.

Part of me isn't surprised by that. I think back to his birth and it makes sense to me. Here he was all cozy and warm inside me. When all of a sudden his cord pulled out of the placenta and he started bleeding to death. He was then cut out of me and had tubes stuck down his throat and needles stuck in him. All in under 30 minutes. So really it's no wonder he needs tummy skin.

And seriously it's one of my favorite things. The feel of his skin on mine. I'm not looking forward to him growing up and not having that any more.

Monday, March 23, 2009

Not the Woman He Married

Mike and I had a discussion last night. He told me I wasn't the same woman he married. He was so worried I'd cry or be hurt, he's not great at sharing his deepest feelings. My initial thought was, you thought I would be? I mean 18 years is a long time and we have been through so much. My mind was racing, what do you mean? I'm not fun? I'm not pretty? I'm too fat? I'm not carefree? Which is it.

He is concerned that I don't like myself. Oh sigh, what a relief, that's easy, you are so right I don't. Ok that's it really? See here's where it gets tricky. He wants me to like myself. He seems to think if I don't like myself then nothing else will work. Huh, ok I admit it he's probably right. So how? How do I make that happen? Of course he has no idea, other than to loose weight. He seems to think that is making me unhappy. His observation is that I try really hard to loose weight then I sabotage myself. Wow, I had no idea he was that aware or that I was that transparent.

So I did cry. I tried to express the sadness I felt deep in my soul. That I felt like a part of me was missing and I didn't know how to get it back. It's true in the deepest part of me there is pain. I'm not a sad or depressed person. I try to be joyful and fun and full of life. But here's the secret. It's an act. It's like I'm putting bows on over a wound instead of letting it heal.

And what do I have to be unhappy about? I have a wonderful husband and two terrific boys. We have a lovely home and want for nothing. And that part of it makes it harder. That's the guilt of not being grateful.

I have been thinking about all of this and I think I wear my sadness like a badge. That badge is my weight. Wow what happened to you? It's outward, unlike the hurts I carry.

The loss of my mom was probably the most horrible experience of my life. Her death is compounded by not only loosing her but by the horror of it. I do not have the words to describe what it was like watching it happen. The surgery, the diagnosis, the chemo, more surgery, and then the bone marrow transplant. Then the end and promise of more chemo until finally prayers for an end. And while I know she is better today, it doesn't make it easier. It doesn't make it worth it. Not to me. It doesn't erase the memories, the fear, the sadness. And it doesn't help my fears of dying too young.

People think it's been 17 years, get over it! But how? Is getting over it, forgetting? Or is it accepting? Cause I have accepted it. I mean seriously what choice did it have? Is it never wishing it was different? Cause I don't think I could. So how do I put it behind me? How do I not miss every moment for the past 17 years and all the future years when I really needed my mom? I know what she would say. She would want me to be happy, that's all she ever really wanted. And she'd want me to be thin.

And then there is my precious son. I can't begin to tell you all the guilt and pain I feel regarding Avery having down syndrome. And I truly don't see a day in my life where I will say oh yea my son has to struggle. Don't get me wrong, he is my heartbeat. But I want him to have the moon and he can't and I have to be the one to tell him that when he asks.

So how do I find the joy of my soul? How do I heal the pain and fill the void? I want the joy, I choose the joy! I am praying, "Lord heal my soul, fill me with joy, restore the joy of my salvation." "and make me thin." But it is a light bulb moment in my life when I admit that my weight is the outward symbol of my sorrow.

So maybe I have to do it. Maybe I have to feel that it's ok that my mom is gone. Maybe I have to truly trust God that I will see her again. Maybe it's time to stop mourning the loss of her and of my babies. I don't want to loose today being sad about what I didn't have. I don't want to loose a moment of my boys life because I can't feel the joy.

I do want to be the woman he married. The one who's heart was full of joy and love not sadness. I don't want to worry about dying. I want to release all that is not of God and I want to like myself again.

So maybe this is my journey; Learning to like Amy.

Thursday, March 12, 2009

The Perception of a Four Year Old

It's 1:30 am and I've been asleep since 9:30. Mike's at work and Zachery is sleeping with me. I hear. "Oh these jammie bottoms got me wet."

Tuesday, March 10, 2009

A Conversation with Zachery

Today Zachery and I went to Walmart to have the oil changed in the car. We did our shopping and were heading out to the car when Zachery asked me about Avery driving. Avery has been telling me he is getting a drivers license when he turns 16. And that's a really hard thing for me. I wish he could. I plan on teaching him how to operate a car, but there is no way he is ready to look for signs, marks on the road, people and all the other clues involved in driving.

So as Z and I were getting in the car he asked me about Avery driving. To be honest I wasn't paying a lot of attention to what he was saying. I was trying to put the groceries in the car, make sure he got in and was just generally distracted. So he was asking me when Avery was going to drive.

"Zachery I'm not sure." "Well when Avery is as big as you, he will drive." "Zachery, honey I hope so but I'm not sure." "Why?" Zachery asks as only a four year old can. "Well, Avery's disability makes it hard for him to learn how to drive, so I'm not sure if he ever will." I answer.

"What's a disability." Zachery wants to know. Sigh, all I wanted to do was get over to Taco Bell, get something to eat and get home. But how do I not answer? "A disability is what makes it harder for Avery to do things and learn things." "Oh," he says, "is it harder for me to do things too?" "No, Zachery it's easy for you to do things. That's why we have to help Avery." With all the wisdom of a four year old Zachery tells me, "but Avery doesn't like it when I help him with his homework."

Ya see that's what I'm up against. My four year old is trying to help my fifteen year old with homework. At Avery's open house, he was showing us his new tools to do his math. He was demonstrating by doing a math problem. So I ask him, "Avery what's 2 plus 8?" When Zachery yells out, "10!" This is what it's like when Avery is doing his homework. I ask him to read something and Zachery yells out the answer. It takes Avery a little longer to give the answer but Zachery doesn't give him the chance. Then Avery gets mad and yells at him and guess what? Zachery yells back. It's quite fun.

So this is my beginning to explain down syndrome to Zachery without it changing how he looks at Avery. Because that is my biggest fear. Zachery calls Avery his best brother. I don't wan that to ever change.

Sunday, March 8, 2009

Sometimes It's Just So Hard

I think being a mom is probably the hardest and most natural thing I have ever done. There are many other things that I have failed considerably at, being a daughter, a wife. But being a mom there is no room for failure. That's part of where all the pressure comes from. Failure means your kids don't live successful lives because of something you did. Wow, now that's pressure.

Being the mom of a child with special needs is both harder and yet easier. People frequently say, "I don't know how you do it," or "I could never do it." First what makes that ok for you to say? Like my life is such a horror that you can't imagine living it. Do you seriously think that is a complement?

So I don't have a lot of Avery posts and you have probably wondered why. Partly I guess it's because talking about his abilities and disability is the deepest part of me. It's that raw part of me where I still feel responsible, as irrational as that is. And part of me feels judged, like I some how caused that to happen. And mostly because he is my son and I can't imagine one part of him without the other. And by talking about it I am opening myself and leaving him vulnerable. Like I am somehow allowing judgment to befall him. So I have not written about it.

But seriously how do I not? I mean I have Avery stories. lol And how do I not share those and share him? So today I share our latest problems.

Avery steals.

Wow were you expecting that? How did that happen you wonder? Well it started in the old school. He was in regular classes and no one thought to send his supplies, that I provided, with him. So he would take the other kids. I got it, he wanted to be like the other kids. He wanted what they have. So he would take their notebook and say it was his. We talked to him about it. Talked to him about things that were his and not his. Made sure he had what he needed.

So it hasn't been a lot but little things. It started with his cousin's PSP. We were staying in a hotel for my grandfather's funeral. We were leaving the next day. I'd gone with my Aunt Liz to look at my grandparents house one last time. When I got back to the hotel Avery showed me what he had done. I was so upset. Mike was, well Mike was freaked. So we took it back. I told him the whole way about how when you take things that doesn't belong to you it's called stealing and you could go to jail.

Then it was a pocket full of balls from the Christian book store. Yep back we went. At the time I thought it was only one ball. Imagine my surprise when they kept coming out of his pocket. Then it was a pair of reading glasses. Which I really think were a mistake. He was looking at them and Zachery started to run and Avery helped me corner him. I really think those he just stuck in his pocket.

So the talks went on and we worried. Were we doing enough? What if this continued? Since then there as been a jacket and a hat from school. I'm not too sure about the hat he swears someone gave it to him. And he always shows us what he did. So far all of this has been over the course of 3 years. Not a lot of stuff, right? But still, it doesn't matter how little we don't take things that don't belong to us.

So the other day he came home with a gameboy from school. He told me he paid $3 for it. Well if he did, that's still wrong. So we went trough the whole is he lying or did he. Then on Thursday he comes home from school and shows me his drink he bought. I thought it was a little odd but did remember him having a little change. Which I really think might have come from Zachery's $2 he had but he should have put it up and not played with it. Then Avery shows me his chips he bought. Ok now I know he couldn't have had that much money! Where did it come from.

Oh he says, he got it out of his dad's wallet! OMG I thought Mike was going to have an appoxy. I mean seriously, he was not happy. Avery says he took 20, 10, and 5. Well I can promise you there is no way Mike had that much money in his wallet. So he's grounded. You can't take money out of Dad's wallet or Mom's purse! But part of me wonders would this happen if he had his own money. I mean he is almost 16 and all the kid wants to do is buy some snacks out of the vending machine. So maybe I should give him an allowance. But I don't want to reward him for stealing.

So for now he is grounded. He is very sorry and was even sorrier when his dad ate his chips he bought. But we are at a loss. We really think it's just a developmental milestone that he's hitting late. He has poor impulse control. He sees something and wants it. But we don't want him to go to jail! Or grow up and be a thief. But we do have to remember that it is normal. Kids steal, it happens. That's the hardest thing about being the oldest child. Mom and dad don't know what's normal. When little brother comes along we know what you did and when he does it, it's not the surprise! So for now Avery doesn't get to take a backpack to school. Frankly I'm too tired to search him every morning. Oh I didn't tell you about the straw did I? The one that broke the camels back. lol

Friday Mike was looking for a chain he needed to use to work on my car. He yelled at Zachery for touching his stuff. Which Zachery had been playing with it the day before. But Zachery kept saying he didn't know where it was. Avery got home from school and Mike looked in his backpack to make sure he didn't come home with anything. And guess what he found? The three foot chain he was looking for! lol I just wonder what the teachers thought if they saw it.

Wednesday, March 4, 2009

What a Night

About 7:00 tonight I told Avery to get the clothes out of the dryer. He walks into the laundry room and grabs his head and starts crying in pain. I asked him if he hit his head or what was going on. No he said it hurt. So a little while later he was sitting in the chair crying and holding his head.

This is always when I'm at a loss as to what to do. I mean it is really bad or are you playing it up. So I called the Dr's office and talked to the after hours nurse. I tell her what's going on and she says we need to go and be seen. That is so not what I wanted to hear. I guess I wanted her to tell him to knock it off!

I wanted to know all the possible things that could be wrong. I didn't think his ear drum ruptured, he wasn't hurting that bad. And he didn't have a fever so I didn't think he had meningitis. But his eyes were puffy and his nose is runny so I'm sure he has a sinus infection. I told him to go take a hot shower and see if that didn't help.

So he watched tv for a bit and then I sent him on to bed. A few minutes later I hear him crying in the bathroom. And I hear this odd sound. I go in there asking if he's throwing up. No he's got his head in the sink running water in his ear.

Ok, we're going to the ER. But guess what? I don't have a car. It's waiting on new struts. So I called Mike's aunt Linda. She came and took us to the hospital. Mike was already at work by then so I didn't feel like waiting an hour and a half for him to get home.

You could tell my poor baby didn't feel good. But he's such a good patient. Come to find out he has an ear infection. So we didn't get home till almost 11 and Zachery had a ten minute nap in the car and was no longer tired.

Both kids are finally asleep and Mike is on his way home. I've been trying to wait up for him but I'm getting tired. I tried to call the bus driver but her phone isn't working. Which means I have to get up at 620 to tell her he's not going to school.

Tuesday, March 3, 2009

My Pear Trees!

Are starting to bloom! I cut them way back after the harvest last year. They hadn't been pruned in years. So I was a little worried I killed them. lol I'm so excited to see flowers cause that means pears!

Sunday, March 1, 2009

El Barno

A few weeks ago we were in Tyler running errands. For those of you that don't know, Tyler is the big town. They have over 50,000 people, a mall, a Target, Best Buy and all kinds of stores. I don't remember exactly what we were after but we had been to several stores. The kids were getting hungry and asking for a restaurant. Well, as much as I was jumping up and down saying oh yes let's eat out!, I knew that we are trying not to any more. It's really expensive and then we wind up wasting food at home.

So the kids were screaming for a restaurant and for the life of me I can't remember who it was that said it first. Ok we'll go to a restaurant. We'll go to El Barno. Mike and I were just laughing! See we live in a barn, so we would just go home and eat.

The last stop we made was to a part store for something for my car. I sat there laughing to myself. The kids were so excited asking what kind of food El Barno had. Well, I said they had hamburgers and french fries. Zachery asked if they had video games like the other hamburger restaurant. Oh yes, Mike says, they have video games! Him and I just keep looking at each other and laughing. We are tickeled that we are pulling one over on the kids. lol

Mike even changes the GPS to say El Barno instead of home. We can't wait to hear it. Zachery askes how far away El Barno is. We tell him 45 minutes. He says, just like home! So Mike and I spend the entire drive home laughing and exctied for the moment the kids realize where we are going and what their reaction will be. The closer we get Zachery askes us things like, do they have playstatin? Oh yes! Do they have Ratchet and Clank? Oh yes! Oh Avery isn't that great!!

So as we get home the kids hear arriving at El Barno and just laugh. They weren't upset, they thought it was pretty funny. So yesterday we were out, in another big city Sulfur Springs with just over 14,000 people. lol Again they asked if we could go to a restaurant, and we say yes we're going to El Barno! Oh no, a REAL restaurant.