Friday, January 30, 2009

Fireproof

Is an AWESOME movie. I couldn't wait to see it. When I was in the eighth grade Kirk Cameron was my McDreamy, lol. He was on the show "Growing Pains" then and I was "in love" with him. I had a poster of him on my wall. As an adult he isn't all that to me anymore, still cute, but definitely not my McDreamy. But I enjoy seeing him in movies since he is pretty much out of the hollywood scene, except for doing some christian films. And I enjoy seeing movies that are inspirational, meaning christian, in nature.

The movie is just so moving. I have seen it twice now and cried like a baby at the end of it both times. If you haven't seen it, I highly recommend it. Even if you aren't a christian, there are principles and lessons in it for anyone. And it's just a really good movie. Ok, the acting isn't as good as say a Brad Pitt movie, but the content is a million times better! At least I think so.

Thursday, January 22, 2009

Kayleigh, part two

The scheduled our appointment for the next day. I went home and called Donny to fill him in, and it's a miracle I was able to talk coherently. I honestly do not remember much about the rest of that day or the next morning, I think I just walked around in a fog. We headed to St. Louis the next morning, Donny's parent's met us there. I remember being just a great big bundle of nerves. We finally get to see the doctor, after what felt like forever. He looked at her eyes for a long time. Then he sat back and with a chart, very calmly explained what had happened to our baby. She was born with a birth defect in both eyes. In laymans terms her eye simply stopped developing at some point in utero, both eyes at different stages. Her right eye's cornea is severely misshapen, her eye looks very cloudy and muddled and there is only a tiny speck of black in the middle for a pupil, and it is very noticeable. She can see nothing out that eye, it is light sensitive, but that is all. Her left eye has the same condition, only not as severe. She has a pupil and an iris and it looks fairly normal, but if you look closely her pupil is not a perfect circle like most peoples, it is larger and is misshapen, and it does not dilate. She can see out of that eye, she is near sighted, but with glasses she has 20/20 vision, in that eye.

I cannot even tell you the emotions that roll through you when the word birth defect and your baby are used in the same sentence. Kicked in the gut, air sucked out of you, room spinning, those are just a few phrases that might capture a hint of what you go through. Only a parent who has experienced this can even imagine. I just sat and stared at him with a look of dumbfoundedness on my face. I didn't say anything, because I knew if I said anything that the dam of emotions that I was barely keeping in check would break and I would have a breakdown. We went back out into the waiting room to wait to see the doctor again and talk about where to go from there. I just sat in the waiting room like a zombie, staring straight ahead, like I was in a trance. I couldn't put a coherent thought together, I was simply trying to digest this news.

We went back in and spoke to the doctor. The next step was to see a cornea specialist. If she was a good candidate a cornea transplant was a possiblity. We left that day with our world changed forever. My heart became much more fragile, and has never fully recovered. I could not call our family and friends to tell them what was going on, the minute I started talking about her I would melt into a puddle of tears. When Donny told my mom I could hear her start crying on the phone and hang up with him quickly. It was a hard day.

We saw the cornea specialist the next week. The plan was to bring her back to look at her eye in depth, through ultrasound and then to admit her to the hospital to put her under anesthesia so they could make a thorough exam of her eye with high powered instruments. They needed to make sure that the rest of her eye was formed properly, to make an accuarate assesment. We got through all that. We found out that the rest of her eyes was, thankfully, normal.

The doctor told us this, we could do a cornea transplant, it might work, might not. There were lots of risks doing transplants on babies so young. And if we were going to do the transplant and have any chance of it working it had to be done now. The thing with the eye is, the muscles and things behind the eye, don't just automatically work at birth. They "learn" how to work, thus why a newborn doesn't see well. If those muscles and such go too long without being used, they will never learn to work. So the transplant would need to be done asap so that those muscles would still have time to get off their lazy butts so to speak. Doing the transplant any time after the early months/few years of life, even if successful wouldn't work because the eye wouldn't know what to do. His recommendation was that since she had vision in her other eye, it was very risky to put her through the surgery, when it might not even be successful. Had she been blind in both eyes he would have recommended the surgery. We opted with the doctor.
I still always wonder if we made the right decision. Even if we had done the surgery I would probably still second guess myself.

We took our baby home that day and got on with our lives, and really have rarely looked back. Because of Kayleigh's limited vision she did not reach the milestones a baby is supposed to reach. She did great at her 6 month appointment, but at her 12 month she was way behind. This is where she began therapy, and also when she got her glasses. Therapy was such a blessing. The therapists were so sweet, they definitley eased the mind and fears of parents who had no clue what to do with their precious baby. She transitioned to wearing her glasses just fine. Within a week of having them she was wearing them from morning to night.

At one time she was seeing 4 different therapists at once, between the ages of 1 and 2. This time is where she struggled the most. She didn't walk until she was 21 months old. She certainly didn't jump, run, hop, climb or do those things like all the kids her age were doing. She was a sweet little girl. So good and obedient and so tender hearted. She was so easy to parent, aside from her developmental struggles, she was a breeze. After age 2 she really took off and we were down to 2 therapists. She was very smart. She learned all the academic things with ease. After age three she went from having therapy once a week to once a month, and at age six went to not needing therapy at all. She has thrived.

Life was/is mostly normal for her, and us. She goes once a year to see her pediatric opthamologist. She does all the things kids her age do. From an outsiders perspective, unless you saw her eye, you wouldn't know she had any issues. She has a few minor things that she might deal with here and there, but nothing she hasn't been able to handle with ease. Her birth defect is very visible, and for that we can do cosmetic contact lenses. We tried them a few years ago. They definitely worked, but the trauma of trying to get her to wear them was too much at the time. And a weird thing happened that day when those contacts were put into her eyes, and they looked normal.

I started crying, not out of happiness, but because with those contacts in, covering her birth defect that has caused us so much pain, it seemed like my daughter wasn't there any more. The defect, which I hate, is such a part of her that now without it, it's like she isn't herself. I kow that sounds weird and doesn't make any sense, it didn't to me either. But it has shaped the beautiful person she has become, that now when we try to change it, it seems like we are trying to change her, and I don't want to change her, she is perfect just like she is. I don't want her to feel like she needs to be changed or conformed to what we think is pretty in order to feel accepted or beautiful, and I think that is what made me cry the most. I know that those feelings of insecurity, awkwardness, and alienation are going to creep into her life soon with the coming of teenage years, and that breaks my heart for her.

I know the next 10 years of her life will probably be much harder than the first 8. I pray that with God she will gain the strength and peace to know that she is beautiful and doesn't need man's approval to feel worthy. I pray that we as her parents are able to mold and make her into the poised young lady who feels confident in who she is and is able to handle any challenges that come her way. I pray that God fills her with His love and she knows that those things, such as outward beauty, don't matter as much as we think they do and that she will gain an eternal Heavenly perspective on life and live each day to be beautiful for God.

I really don't mean to make everything sound trite or that everything is all hunky dory all the time. 99% of the time I have come to terms with it. Then sometimes those raw emotions of bitterness, resentfulness, helplessness and hopelessness pour over me and I weep for my daughter and what I feel can be a hard road. But I also know that I am so blessed, I have my daughter with me, she doesn't have leukemia, a tumor, isn't on a ventilator, some things that parents have had to deal with that are far greater challenges than anything we have to face. And I know that we are just fine.

There is a possiblity that what happened to her eyes can be degenerative, meaning it could get worse in her eye that has sight, with the possibility that it could progress so far that she could be blind in that eye as well. To be honest that possibility cripples me with fear. I have learned to put my trust in God and take it one day at a time. At the beginning it was one hour at at time. But you know what, we got through it! And I know that the person she is today and will become has been shaped by how fearfully and wonderfully made she is and for that I wouldn't change her for anything. Does that mean If I could would I miraculously make her better, of course I would. With that though is a two edged sword. I would never want to change her sweet spirit. So would changing what God has allowed in her life change her emtionally, I'm sure it would. But obviously that isn't what God's plan is for her. Whatever His plan is for her, I am so grateful that I am getting to be a part of it. And I just pray that I don't screw it up!

Sorry for the novel. To be honest here this is the first time I have talked in depth about what we went through, and I really could have written for hours more. I wrote this as much for me as anyone, and it felt good. I hope her story can bless someone or if it could bring someone to know Christ that would be the ultimate in a happy ending, because that is really what life is all about.

Wednesday, January 21, 2009

Kayleigh, part one

In a previous post someone mentioned to me about not knowing about the challenges our oldest daughter faces. So I decided to write about it and here is her story.

I remember the day I found out I was pregnant, I had been at my parents house for Christmas, Donny had to work and couldn't make it. I was a couple of days late, but was trying to not get anxious or get my hopes up because we had been, not really trying, but not preventing for a year and nothing had happened. We had also miscarried 13 months prior, so I was nervous. My parents lived a couple hours away from where we lived at the time, and on the drive home I could stand the suspense no more, so I stopped at Wal Mart and bought a pregnancy test. Then I headed straight to the women's bathroom and took it right then! It was positive (duh), and I was so excited and naturally couldn't wait to get home to tell Donny. When I got home he was next door at his brother's house, yes we lived next to his brother for a while and are actually still speaking to them, lol. And they had a brand new 3 week old baby, their fourth, which didn't help my baby fever. So I walk in the door and say, in front of his brother and his brother's wife, "there's going to be a new addition to the family", with a big stupid grin on my face. My smart as a whip husband says with a puzzled look on his face, "Courtney (my sister) is having a baby?". I say, no dummy we are! It was a neat day.

Everyone was super excited. This would be my parent's first grandchild, and although my inlaws already had 4 grandchildren, they were very excited because my brother and sister in law had officially closed that chapter of their lives. Oh the time drug by, I could not wait to have this baby. I didn't really enjoy being pregnant that much, because I was just so anxious to meet our child. Of course the first 4 months went by at snail pace, with morning sickness and not really a baby belly, but just enough of a pooch to look fat. I wanted to wear a shirt that said, "I'm pregnant, not fat". Then we got to find out the sex of the baby about half way through and I was overjoyed that it was a girl. I had the biggest smile on my face when they said those words!

Then we had to move. It was either move and my husband keep his great job with awesome benefits, or stay there and HOPE that he could find something that paid halfway decent. We opted to move, it really was the only way I would be able to stay home when our kids came along. So off we go 100 miles from Donny's family and about 200 miles from mine. But we were young and naive and sooo excited to get a fresh start!

Pregnancy was smooth as butter. By week 36 I was OVER being pregnant and I wanted this baby out of me NOW! It was August and 120 degrees in the shade and I was 45 pounds heavier than I had been 8 months earlier. My ankles looke like elephant legs. I was done. Unfortunately, Kayleigh wasn't. She stayed in there for 40 weeks, like a good girl. At my 40 week appointment my blood pressure had risen considerably. Um, I was hot, tired and had been having debilitating back and leg pain for four weeks, I was lucky I hadn't had a stroke, lol! So my doc decided to go ahead and get his girl outta me.

I went in on a Thursday morning for induction, did pitocin for two days. Doctor broke my water morning of day 2, had an epidural a few hours later, and she was born that afternoon. I know labour is not supposed to be fun, but I had such a wonderful experience. I was in no pain, and I was surrounded by a ton of people who were at my beck and call, hehe. I remember when she was crowning and they said, this baby has red hair, and we were all like, really? Sure enough she came out with, not much, but the reddest peach fuzz, we were all so excited. And surprised, gotta say I didn't see that coming! She had a bowel movement in the womb so they took her to make sure she was breathing ok. She was, and they brought her back to me shortly to nurse.

Everything was great! In an I just had a baby way. I was tired and sore and Kayleigh was precious and kept me up all night. The next night after her birth, I was in my room alone, everyone had left, she was in the nursery, and a wave of emotions just swept over me. I just started crying and couldn't stop. It wasn't just being scared or overwhelmed, it was plain out of my control, my hormones had taken over! The nurses were really nice and told me to talk to them if I needed anyone. Just a short time later that evening, I was holding Kayleigh, alone, and I noticed that when her right eye would open it looked really light colored. Not just the pupil, the whole eye. It just didn't look right to me. But newborns do not open their eyes very much at all, and when they do it is pretty much just a squint, so I couldn't get a real good look at it. But it definitely to me did not look like her other eye, which looked normal.

I freaked out. Tears started flowing and I remember thinking, "Oh God no, please there can't be anything wrong with my baby", and I started to panic, really that is too tame of a word for what I felt. I jumped (as well as a woman who has just pushed a baby out of her vagina can) out of the bed and walked to the nurses station and asked them about her eye. They told me that it was really common for babies to have one eye be alot lighter than the other, and everything was ok. So I felt better.

The next day when the pediatrician came in to do her exam before we left, we asked her to look at Kayleigh's eye. She did and assured us that it was fine. Ok, so now I could relax. We took her home that day. What a day that was. I cried all day, for no reason whatsoever. Any mama's can relate. It's like someone is pouring water into your head and it must come out of your body or you will die, and it's only way out is your tear ducts, really annoying by the way.

So the first night we are home is horrible. She wasn't nursing as well as they wanted her to before we left the hospital and they had me convinced she was going to die. They seriously had me so worried I thought she was going to starve to death. No pressure! We got through that first night, and miraculous thing happened the next day. Kayleigh decided she was hungry and that she would eat. Hmmm, who would've thunk it, babies eat when they get hungry, good to know!

The nursing started going much better and I could actually breathe again. The crying was increasing at an alarming rate, mine, not hers! I had completely lost control of my body, seriously. Donny had gone back to work the day after we came home and I had no family or friends in the brand new town we had just moved to 4 months earlier. Can you read, recipe for disaster? So a few days later I take Kayleigh in for her first checkup, everything is great. Then right before the doctor walks out she asks if I have any questions. I then remember that I want her to take a look at her eyes, just as a precaution. The other doctors and nurses had told me after all that she was fine, and I had almost forgotten about it.....almost. There was always still a nagging thought in my head that something was wrong, but being told that everything is ok and wanting to believe it so badly, made me feel comfortable.

She looked at the eye and I immediatly knew something was wrong. She told me she wasn't sure what was wrong, that it could possibly be glaucoma, but she wasn't sure and that we needed to get her seen by a pediatric opthamologist right away. She left the room, and I tried to hold it together, and miraculously did a pretty good job. They took me to an office where a very nice nurse was making the phone calls to get Kayleigh in. They wanted me to take her that day, and the nurse asked me if I had anyone that could go with me right then, and I dissolved into tears. Donny was at work, and I knew not another soul here. Knowing then what I know now I would have just called Donny and said leave now we're going, but I was an emotional wreck and could hardly speak much less think. I felt very alone............to be continued

Sorry to break it off right here, but I have so much more to write and I don't want this post to be 30 minutes long. And right here is where our lives changed forever, so I will continue tomorrow.

Monday, January 19, 2009

Football

I am not a big football fan, never have been. Before I married my husband I knew absolutely nothing about the game except the shape of the ball and the general idea of getting the ball from one end of the field to the other. Now I know more than I really want to know, lol! Did you know that there are approximately 1, 423, 628 rules in professional football! My husband isn't a huge football fan, but he does keep up during the season and watches his fair share.

We are St. Louis Rams fans generally. I say generally because right now they bite, bad! So we all have to have a back up team to cheer for, right. Mine is any team that Kurt Warner is playing on, that man is awesome! And right now that is the Arizona Cardinals. For anyone who doesn't know, he became a superstar quarterback with the Rams back in the late 90's and early 2000's. It isn't how great a football player he is that makes him so awesome though. Or how good looking he is, cause ladies he is VERY easy on the eyes. Hey, I know I'm married, and my husband is a wonderful man who I love very much and think is very attractive, but I do have eyes in my head and can actually see other men and it would be ridiculous to not notice the attractiveness of other people on a basic level, lol! Or how just so dang nice he is that makes him so awesome.

It's his decision to live his life for Christ and to give Him all the glory for everything in his life. The man has some kind of testimony! And he doesn't just talk the talk he walks the walk. How refreshing it is to see a highly succesful superstar athlete praise God on national tv, it gives me goose bumps. I don't mean to put him on a pedestal, he is no better than any other Christian living their life for Jesus, it's just so great that with all the crap that usually comes from professional athletes who young people look up to, it's nice to have one that is actually worthy of looking up to.

Oh and in case you don't know the Cardinals have made it to the Super Bowl, go Cards!

Tuesday, January 13, 2009

What's with all Drama, Mama's?

I am in a women's church volleyball league. I LOVE it, because I love, love, love to play volleyball. I don't care who I have to play with, what time I have to be there or where it is, I just love to have the opportunity to play. The other women, not so much.

Some are griping because they have to drive 12 minutes instead of 5 minutes to get there this year, others are griping because we go by the more current rules of rally scoring, net serves count, etc., still others say that if we go back to the "old" rules, they don't want to play. Some are griping because the games go faster this year, because of the new rules, others griped last year because we couldn't start on time because the games took longer. One person gripes about people that aren't dependable in other things, yet herself is always late for lots of things and seems to think that doesn't matter. I am so TIRED of the stinkin' whining! Show up and shut up or go home, is what I want to tell them. Everyone thinks they can run it better!

What is it with women that makes us be so dramatic? We bicker, whine, complain, talk behind other's backs. I am not lumping all women into this category, but I know most of us have done this sometime in our lives. And I am not saying we are horrible people because of it either, we're only human. I am usually mostly drama free, but even I get sucked into it once in a while. I am by no means perfect! I am just tired of the constant murmur of discontent. The Bible says in Exodus ..."the people complained and the Lord was displeased..", I am paraphrasing here, so forgive me if that is not 100% correct. Whining is not lady like, nor is it Christ like.

So, I have resoluted (I really don't think that's a real word) to not be so dramatic. I need to cut the whining, the gossiping, the bickering, the listening to gossip, the griping, anything that can fuel drama, I need to STOP! I don't want to hear it anymore! And ladies, this is probably going to be the hardest resolution to keep that I have ever made. I am a talker, and you know that when women talk there is bound to be some drama happening in someone's life.

Along with that resolution is that when I am part of someting that I might think could be done differently, I need to show up and shut up and do my job!

So please pray for me, this human being that I am, will falter. But with God's help I can be a better reflection of his compassion and mercy, and discretion. Oh boy, do I have my work cut out for me!

Monday, January 5, 2009

Running

I don't like to, only if it involves my children bleeding to death do I attempt it. I am new to facebook and have recently discovered that several of my old friends are now running, and I mean serious running, like 5k's and half marathons and such. Makes me jealous. The thing is I never was a runner. I was quite an athlete in high school, volleyball was my favorite, and I played it all through junior high and high school. I was pretty darn good at softball and tennis as well, and I was up to trying any sport at least once. I could do 100 push ups and 50 sit ups in 10 minutes flat, I had the stamina of a horse, but running just never was my strong suit. Runners just seem to be the ultimate athletes, they are (usually) thin, and very dedicated and focused and have lots of energy. I would LOVE to be a runner, but HATE running, I could hit a ball against a wall all day and love it, but running one lap in the gym was detestable. Is there a point to this post, not really, just that I feel like a total slacker and want to magically enjoy running. A girl can always wish, can't I?

Saturday, January 3, 2009

Wii Fit

We just got one today. The hubby has been wanting to get one, and has been on the lookout for the past month. But they have been as hard to find as a husband who does laundry, voluntarily. So today at Wal Mart, to hear Donny tell it, God was looking out for him and we got one of the three that had just been delivered and never even made it to the shelves because they were all purchased within about 2 minutes of being there.

Anyway I digress, I did the wii fitness test and I am officially classified as overweight. Overweight! I have never in my life been overweight. I was always a few pounds under bean pole as a teenager, and have been at my ideal weight for most of my adult life, minus during pregnancy, when you could say I was a few pounds over heifer. But after my third angel was born, when I was at the ripe old age of 33, I haven't been able to get rid of these last 25 pounds of baby fat. Funny thing, eating whole bags of baked BBQ lays with homemade ranch dip and whole bags of chocolate covered peanuts in one sitting, don't exactly jump start weight loss. Who knew? So if I ever want to see single digit sizes again I am going to have to excercise, ugh! I HATE to excercise! I used to never have to excercise. Did I mention I was a size bean pole? And I maintained that ideal weight by eating 4 hamburgers and 2 bowls of cereal for supper every day.

I guess that third child and my advancing age have really knocked my metabolism on it's butt, and it isn't going to get up. I think I have just worked it too dang hard for the 33 years previous an it is on strike. My goal: 10 pounds in one month, and then hopefully 25 pounds as quickly as possible after that. Pray for me. Did I mention that I hate excercise and love chocolate covered peanuts? Yeah, I'm in trouble!

Friday, January 2, 2009

A massage.

I am getting one in about an hour, compliments of my husband, it was one of my Christmas presents. He has gotten me 3 or 4 over the years, and they are by far my favorite present! If you have never had one, please treat yourself at least once. Or when someone asks what you want for Christmas and you can't think of anything, tell them this. It so so stinkin' relaxing there aren't even words to describe it. If every person could have one a week, there would be no road rage, I'm tellin' ya, it works the stress right out of your body. The kids are at grandma's, Donny is asleep because he worked all last night and I have the day to myself to get a massage, that truly is a gift from Heaven, haha! Then tonight we are going to eat and go bowling with our pastor and his wife and another couple from our church, it's a good day!