Tuesday, July 31, 2007

Sweet Mother of Pearl

Good grief!!! Well, we are finally connected to the outside world again. I guess I could have picked up a newspaper and found out what's happening, but that's too much work. Anyway, it really stinks not to have internet access. I felt like I should've had an out-house in the back yard and two soup cans connected by a string. I have to catch you up on so much that I don't know where to start. Since the internet went down, I have cried in front of a doctor, told a receptionist what she can do, bought big girl undies, sent in tuition for preschool, and made yet another appointment for hearing aids. I'll make sure I fill you in on all of it and more. You might be sorry that I didn't have my outlet for a week. I got a lot of energy built up. Thanks for sticking around. You have been missed!

I would sit down at the computer and forget that it didn't work. I got so mad one time I just kept trying to connect to the internet over and over again hoping that it would just start up. It was like I was addicted to crack. Only the crack was the internet, my supplier was arrested and I had no way to get the stuff. Rough week.

Anyway, how have you been? Any fun stories? Any interesting anecdotes? Anything that you need to share? Missed being connected, thanks so much for waiting it out. You rock!!!!

Thursday, July 26, 2007

Please Stand By

Just wanted to let you all know that my internet is down and I will not be able to post until we get it fixed. I am hoping that tomorrow we will be back on track. I had to go to my neighbor's and hijack their computer to let you know the situation. I did not want you to think that I have given up on the blogging world. I feel like I am lost when I can't get on the world wide web. Crazy how connected we can get and how empty we feel when the day in and day out things get changed. Talk to you soon!

Tuesday, July 24, 2007

A Few Questions

I took these pictures recently and I had a few questions.



1) Do I leave the air conditioning too low?






2) Does this look like a comfortable place to sleep?







3) Does life get any better?







Monday, July 23, 2007

Coincidences....Part II

There have been so many things that have happened in our family since Lauren was born that's proven God really exists and He loves us. Other people would call these things coincidences. I call it planning ahead. God knew that I would struggle sometimes having a special needs child. I believe that He prepared me a long time ago by putting certain people in my life to help me along the way. I have a saying when it comes to friends. I am not sure where I heard it, but it goes like this: There are friends in your life for a reason, a season, or a lifetime. We've all had those friends that were in our lives exactly at the time we needed them the most. It's not a coincidence that they were there. One of those friends in my life is my Krista. I call her my Krista because no one else is allowed to have her. They can borrow her, but not keep her. Krista lived right next door to me when we lived in Shelby, NC. We lived next to each other for five years before her family moved to Hickory and we moved to Charlotte. We got really close and spent a lot of time together. I know now there was another reason our lives collided. God was strengthening our friendship for what was about to come. About a year after Lauren was born, Krista had a son. Would you be surprised if I told you her son is severe to profoundly hearing impaired? What are the chances that two best friends from two different states moved next door to each other, taught in the same school, and had kids with the same special needs? I will go out on a limb and say slim to none. Our friendship isn't a fluke or a nice surprise. It's part of a plan that made a scary situation a little easier handle. Especially when you get to go through the same struggles with a friend who can truly relate to your feelings and frustrations. I share all of this for one reason. Be thankful for the friends God put in your lives. They were put there on purpose. You just might not know the reason yet.

Sunday, July 22, 2007

Thanks

This post is dedicated to everyone who has read or has wanted to read about my Little Muffin Head. I wanted to take a minute and thank you for taking the time to listen to me whine, rant, or giggle about my little girl. There are way cooler blogs to read, however I am honored that you take a moment out of your busy day to check in and see what's going on. You have no idea what it's like to read the encouraging comments you leave behind. To know that you rejoice in our triumphs and cry right along with us humbles me beyond words. It's a little scary to put yourself out there for the world to see. I say stupid stuff all the time. Only now it's out in the open for every one's viewing pleasure. Thank you for the kind words, for your prayers, and for your honesty. I am a stronger person because of your love and support.

Thursday, July 19, 2007

Missing Out

I just realized the other day that I missed out on a lot of firsts in Lauren's life. Things as simple as the first picture you get of your baby in the hospital all wrapped up in a pink or blue blanket. I had an emergency C-section and she went right into the Neonatal Intensive Care Unit. You don't get that cute first picture when that happens.

The nurses in the NICU were the first ones to hold her. I had to wait until I was strong enough to get out of bed to go down and see her. It was a few days after my C-section.

She had a feeding tube after she was stabilized. That was how she ate for the first time.

They gave her a bath while still hooked up to the tubes. She had goop and gunk in her hair after she had some tests run. So the nurses gave her her first bath. I got a Polaroid of it. It was very cute, but I would have loved to be the one to do it.

I say all of this to show that the firsts are fun, but not the most important. It was important that Ty and I stayed strong and got prepared to handle what was now in front of us. During the time she was in the NICU, friends would stop by and pray with us. There would be eight of us crammed in the hospital room watching Survivor allowing me to keep my mind off the sad stuff. I got to sleep eight hours a night for the first 12 days of being a mommy. Who can say that? Ty and I spent time talking and supporting each other. It was a special time that made me strong and helped me process what Lauren was going through and what we need to do for her. Missing out on the little stuff in the beginning doesn't compare to the stuff I get to experience with her now. Pictures fade, baby books collect dust. The fact that she is here with us at all trumps everything else.

Wednesday, July 18, 2007

I Hate Playgroups

This title might sound a little harsh, but it really isn't what it seems. I love playgroups, I just hate going to them. And not for the reasons you might think. I love hanging out with other moms and I love that Lauren gets to play with other kids. Only that doesn't happen when I go, so I hate playgroups. I don't get to hang out with other moms. Lauren requires so much more attention at a playground, swimming pool, or public play area for safety reasons. I don't have a minute to spare to say hello to anyone much less have an entire conversation. She can't play by herself. When only one side of your body works right, I can see why. If I don't help her up the stairs or down the slide she can't do it. She just stands there on the ground watching everyone else play. So here I am, at the jungle gym surrounded by toddlers when all I want to do is catch up with my friends. In the pool I have to hold her hand even in the shallow area because of her right leg. She slips and falls on hard ground every other second. Imagine what it's like for her on a slippery surface. Forget public play areas. Kids are not patient with Lauren if they don't know her. She has been knocked left and right without even so much as a look from the other kids. That's not fun for me to watch. Please don't get me wrong. I wish playgroups were easier for me to attend. I really want to go and I miss the social aspect of it. It is just really hard to go and watch other kids doing what you wish your child could do. So I don't go because it is sometimes easier. It doesn't hurt as much if it's not right in front of you. Maybe that's selfish. Who knows. I hope that it doesn't come across that way. I am hopeful that this is only a temporary thing. Her physical therapist takes her to the playground during her sessions in order to overcome this issue before she goes to school. Thank you for anyone who has ever invited me to a playgroup. Please keep inviting. Hopefully one day soon I will be able to say with confidence, I love playgroups.

Tuesday, July 17, 2007

God Bless Rugby

We have the best dog in the world for Lauren. He is a 115 pound lab that we got the week before I found out I was pregnant. He wasn't 115 pounds when we got him. We had no idea at the time he would end up being the Andre the Giant of dogs. He is so good with Lauren. He takes so much abuse and punishment, but can also be a little sneak. Lauren will get this look in her eye and take off towards Rugby. She does a running Sumo suplex right into Rugby's belly as he is minding his business in doggy bliss. He just looks at her as if to say 'That's all you got?". She will pull his ears and take a look inside. She will lay on him so she can flip her legs over and do a somersault right off the back of him. She pulls his legs to try and make him hug her. She will lead him around by his collar. I even saw her trying to draw on his nose with a pen. You might think I am a horrible parent to both Rugby and Lauren, but I have no idea it's going on most of the time. Rugby never barks, snarls, or nips at Lauren. I worry about Lauren around other dogs. I have horrible visions of her running towards a miniature poodle one day thinking she can body slam that dog, too. Don't feel too bad for Rugby. He's not that innocent. It's actually a very symbiotic relationship. Lauren loves to rest against Rugby when she's tired. She usually has a snack in her hand. It never lasts long because the little sneak of a dog takes it right out of her hand. We tell Lauren not to take her snack near Rugby, but it doesn't seem to sink in. The relationship between Lauren and Rugby is give and take. He gives Lauren exercise and excitement, while she gives him her snack. As far as a dog is concerned, it works out pretty well.

Monday, July 16, 2007

Ghetto Fabulous

Our air conditioning broke this weekend. Of course it had to happen on Friday night. No one was able to come out until today. I was the biggest baby known to man. For a moment, I actually thought my skin was melting off. Tyler said I was being dramatic. Where would he get that idea? Anyway, I wish you would have seen Lauren through this whole thing. By Saturday night, I was getting a little cranky from the heat. Lauren had finished dinner and needed a diaper change. It was not a good time to realize that we were out of diapers. I had been sweating for the last two days and in the least constricting outfit I could find. There was no way I was going to attempt to make myself presentable to go to the store. Luckily, there was a few 'swimmers' left. Yes, the kind kids wear in a pool. I guess Lauren thought it was time to go swimming because she disappeared for a moment and came back with her swim ring around her waist. Wait, it gets better. She apparently felt that this was a fancy occasion and returned wearing one Cinderella princess shoe. Hold on, because that wasn't fancy enough. She also had a string of pearls around her neck. Did I mention that it was hot and she had nothing else on except the swimmer, pearls, swim ring and one Cinderella shoe? Add to that sweaty, soaked hair and dinner crumbs on her chest. Like I said, ghetto fabulous!

Friday, July 13, 2007

Back to the Future

Lauren and I went to the audiologist today. We were going to start the process of getting hearing aids. Long story short, we have to go to a different office in the South Park area that is better equipped to handle younger children. Don't feel bad, the day was not a waste. Lauren and I got to take a ride in a time machine. When the doctor walked through the door, I could have sworn it was 1955. No lie...the doctor came in with one of those silver, reflective circles strapped to the front of his head. It was smack dab in the middle of his forehead. Just like the doctors wore back in the 50's. It even had a small light behind it. Can you picture what I mean? Complete with the long white coat and the big round glasses, I looked around to see if there were hidden cameras. Surely doctors don't use those anymore! It had to be a joke. I tried not to stare like he had a third eye or something. Lauren got really comfortable with the doctor really fast. Three minutes into the appointment Lauren decided that Dr. Reflective Circle Head needed tickled. Yup, she started to tickle this doctor like it was her job. A cute little tickle would have been appropriate, but not Lauren. When she was done she had a handful of his white coat and probably a few of his skin cells as well. She went to town! Her entire body was into it and she was wiggling from head to toe just to make sure the tickle had some power behind it. I must say she was having fun and I suppose she can get away with it being that she is only 3. However, if she still enjoys tickling strangers at age 16, then I will worry.

Thursday, July 12, 2007

Tattle Tail

Lauren is a tattle tail. If she gets in trouble with Tyler she goes to her room or gets a time out. As soon as the water works are over, she comes sprinting to me. She spends the next few minutes pointing feverishly at Ty. After I acknowledge her and she is satisfied that I know that Tyler was the culprit, she shows me where she had to go. Keep in mind she is tattling with only her pointer finger and a scowl on her face. In a matter of a few minutes she had to have pointed at someone or something over a hundred times. If I dare ignore the silent rant, the pointing gets more violent. I swear she's going to take out an eye. Then she will have a leg brace, arm splint, hearing aids, and an eye patch. Just picture that for a moment.

Wednesday, July 11, 2007

The Results Are In

Lauren did great today during her hearing test. She was a little demon possessed as she came out of the anesthesia. I was told by the nurses that it was a normal response. My arms would disagree. I spent 45 minutes preventing her from flailing out of my grasp. I actually broke a sweat.

Anyway, I wish I had better news to share. To my utter shock, Lauren is mild to moderately hearing impaired. The brain was damaged during the stroke and the only way to get her where she needs to be is through the use of hearing aids. She can hear voices, but only a handful of letters/sounds. That would explain the lack of language.

I am about to get real honest about my feelings. Door wide open, nothing hidden for the sake of being positive. I am sad. I feel a little like I'm bi-polar a times. I cry and get mad. Then I feel relieved that it's over and we can get her help. But mostly I am just heartbroken. I really didn't want her to have to jump over another hurdle. Just like every other mother, I want the best life has to offer Lauren. This wasn't what I pictured. I didn't sign up for this and I don't remember being asked if this is what I wanted to do. I don't feel like looking for the bright side again. I did that already. I feel like pouting in a corner and throwing the biggest pity party man has ever seen. I feel like stomping my feet and screaming at the top of my lungs. I feel like blaming someone. I feel like I just want to cry until there are no more tears left in my body. I'm tired. I'm tired of therapies. I'm tired of doctor's appointments. I'm tired of hurdles. I look in her tiny little face and wonder how I am going to explain why this happened to her. I wonder what words there will be to tell her that's she's perfect when everything around her tells her otherwise. How do I do it? How do I make her feel like she can take on the world? Do I have enough strength? Do I really have it in me?

It's time like these that make it really hard to be a mom of a special needs child. Thank you for letting me be honest. Tomorrow is a new day. I will have had the time I need to sort through these sad thoughts and come out on the otherside positive and confident. If you know me well, you know that I am not a depressing person (This blog excluded). It's important for you to know that I am not all butterflies and roses. I have real feelings and sometimes they're not fun but I still have to deal with them.

Do I still think Lauren is perfect. Absolutely. This is going to sound very contradicting to the above ranting I just completed. I wouldn't want to change anything. If I had the power to go back and undo all her disabilities, I would never do it. She wouldn't be Lauren anymore. I don't know her any other way and I wouldn't want to. This is who she is and I love her no matter what. She is my perfect little muffin head.

Monday, July 9, 2007

Update

I got a call today from a lady named Linda. She was calling from Carolina's Medical Center to do a pre-screening before Lauren goes under the anesthesia. She asked me a series of questions about her medical history to ensure there wouldn't be any dangerous medical issues that could arise as a reaction to the sleepy-time medicine. We were done after about 15 minutes so I said goodbye and went back to watching 'Scrubs'. Thirty seconds after I hung up, Linda called back again. Turns out that there were some things that happened during the first few hours of Lauren's life that raised some red flags. Apparently, kidney function is one of those things. Among a plethora of problems, Lauren had trouble with her liver and kidney function for the first few days after she was born. It was explained to us that it was just her body 're-booting' itself from the stroke. She never had any problems after she left the hospital. Think of it this way. If you ever had an older computer with low memory, it probably froze up from time to time. You simply turned it off, waited a minute and restarted it again. It took a little while for all the programs to come back online, but if you just waited it worked itself out. Same thing with Lauren's liver and kidney. Now that the doctor heard about the kidney, Lauren needs to go in tomorrow and have some tests run. I am thankful that they are taking every precaution. However, I pretty well had the market covered when it came to being anxious enough about Wednesday. A doctor calling you in for extra tests never helps. Please pray for Lauren as she has these tests tomorrow. It is during her nap time and Tyler has to take her because I will be working. Pray that she gets the all clear and we can get Wednesday finished and off my mind.

Sunday, July 8, 2007

Reality

Lauren is now to the point where she realizes that her right hand does not work as well as her left. Even though she doesn't tell me that she knows, her actions speak loud and clear. It really breaks my heart and makes me giggle at the same time. Is that mean? Lauren is trying so hard to incorporate her right hand in daily activities. She was trying to eat a pretzel rod the other day by putting it in her right hand and lifting it to her mouth. Instead, she put it in her right hand and brought her mouth to the pretzel. Can't say that she isn't smart. She recently tried to turn her hand over to see the piece of paper in her palm. If you have ever spent any time with her you know that's nearly impossible to accomplish. It doesn't stop her from trying, though. I watched her take the left and literally pry her right hand open while attempting to turn it palm side up. When anyone or anything touches Lauren's right side it tenses up. The harder you try to move it, tighter it gets. So to see her little hand reach across her body to open a hand that isn't going to budge breaks my heart and makes me giggle all at the same time. It breaks my heart because I can't explain to her why it's happening and I can't do anything to fix it. It makes me giggle because she has such a look of determination on her face. The eyebrows come down, you hear the occasional grunt as she pulls open her fingers, and a little line of drool appears because she forgot to close her mouth. So, not only do I get to clean up pretzel pieces crushed under the weight of Lauren's Superman death grip, I get to clean the pretzel pieces mixed with a healthy dose of baby slobber. We seriously do not get paid enough!

Saturday, July 7, 2007

Going Northern

One of the most frustrating things I have encountered the past three years is how much I have to fight for things concerning Lauren. Don't get me wrong, I haven't thrown any punches and there are no Ultimate Fighting championship rings on my fingers. I mean the day to day stuff that I have to do. I've had to fire a speech therapist, confront a national chain of preschools (I had the President and CEO calling me at home. That was really cool!), and fight with the state of NC to get her therapies started, just to name a few. What's really funny is that my personality doesn't match the activities I've been forced to do. I HATE, despise, loathe, and want to vomit at the thought of confrontation. I would rather poke my eyes out with a rusty fork than initiate a conversation that I know will not be received well by the other person. Where did I get this confidence to confront? It's been in me all along. Here's what I mean. I am oriniginally from Pittsburgh, PA. I am a 'northerner'. There is a phenomenon that I have discovered recently. People from the North have fewer problems speaking their mind. Being from the north, that should apply to me. My only problem is that I have been in the South too long. "Bless her heart" is now in my vocabulary and the will and desire to say it like it is has taken a back seat to sweet southern charm. However, there is something that happens to me when I am forced to take a stand for Lauren. I call it "going northern" and it's not pretty if you're on the other end of the conversation. I am very patient with people and they have more than enough time to make the right decision. If I see that they are being unreasonable or unfair in any way, especially if it is concerning Lauren, it starts. First, I let them finish. Then I take a deep breath and let the fun begin. I start by telling them what needs to happen and why. Out of nowhere, reasons, concerns, and requests start flowing out of my mouth at break neck speeds. Most of the time I don't even remember what I said. The adrenaline kicks in and we're off. I never cuss or threaten. I just don't accept anything that does not benefit Lauren. I only have one chance at getting Lauren what she needs to be successful in this life. I don't want to look back on anything and regret not saying something.

Friday, July 6, 2007

There Are No Coincidences

Every now and then I like to think back to the beginning when Lauren was born. I am able to see more clearly that there were no coincidences surrounding the whole experience. Maybe because I am farther away from that time and place, it allows me the ability to see the things I couldn't see when it was happening. I'll start with the most obvious one. Did you know that I have a Special Education degree? What's even more curious is that I never used it. I was dead set against teaching Special Education. I wanted someone to hire me because I was a good teacher, not because there was a shortage of EC (exceptional children) teachers. So I taught for 7 years in a regular education classroom. In those 7 years I got all the students that were being mainstreamed. It was easier to put them in my classroom, I suppose. I already knew all the laws, procedures, etc. I had students that ran the spectrum. There were kids with Torrets Syndrome, physically disabled, mentally disabled, emotionally disturbed, ADD, ADHD, and OCD. Pretty much any acronym that labeled a child, I had in my classroom. Now it was my turn to be on the other side of the table. I had to sit down in a meeting with CMS schools a few months ago and do an IEP (Individualized Education Plan) for Lauren. The IEP is the plan set in place for Lauren's education. It spells out what extra services, like physical therapy, occupational therapy, and speech therapy, she will get all through elementary and high school. She is now (and will be for a long time) labeled as Special Education. The good news? There are no surprises for me. I have been on the other end of this mess for so long now I could do it with my eyes closed. Something that could have easily overwhelmed me has turned into something manageable and uncomplicated. Coincidence that I had this degree? Nah, just God's perfect plan to make sure I could handle what was coming my way.

Thursday, July 5, 2007

I Am Scared

I am scared about Lauren's upcoming hearing test and I just need to get some stuff off my chest. My last post gave a little background about what is going to happen July 11th. I am a little nervous about her going under, but that's not my main fear. What if she has a hearing problem? That would propel me into another category that I am not so sure I am ready for. If she has hearing loss and requires hearing aids, I have instantly become a mother of a multi-handicapped child. The thought of that makes my head spin. I just got used to dealing with the fact that my daughter has some physical issues to overcome and now I have to start all over again. It would be one thing if I knew about the hearing problem at the same time we found out about the CP. I would have been able to get it all over with at one time. I am not so sure I am ready to handle another disability, set of limitations, or more adaptive equipment. I fell like I want to stomp my feet on the ground, fold my arms, and yell "It's not fair!" over and over again. You know, take the mature attitude. Just so you don't think I am about to end it all, here's what I know that helps me through the day. I know that God has placed this child in my life for a reason and it's not because he wants to see me suffer. He's not a big bully with a magnifying glass and I am not an ant about to be roasted. I can handle anything and everything that comes with being a mother of a disabled child. I am just stubborn enough to know that failure is not an option when it comes to Lauren. If I don't expect her to be the best she can be with the gifts that God has given her then I did fail. Knowing this adventure has nothing to do with me puts things into perspective. This is all about showing God's love for Lauren when she wonders why she can't keep up with other kids, tie her own shoes, or gets teased at school. It really has very little to do with my feelings, worries, or pity parties. Does that mean I will never feel scared, sad or worried? No way, I will probably have sob stories till Jesus comes home. I just need to remind myself that it's not that bad. God hasn't made a mistake yet, and He's not about to start now.

Monday, July 2, 2007

Sedated ABR

Don't you just love medical terms? I think there is a doctor that sits in a room and tries to come up with terms that are meant to scare the you-know-what out of people. For example, Lauren needs to go have another hearing test on July 11th. If you are not aware, Lauren has failed her newborn hearing screening and has gotten mixed results with every other hearing test she has taken since. The final test she can do is called a Sedated ABR. It is a test that requires her to be knocked out while the doctors test her brainwaves to see if the brain actually registers sound. We should know for sure if she has a hearing problem after the results are read by an audiologist. My proposal? Instead of calling it a sedated ABR, why not call it the sleepy-time brain checking test? Why the name change? Two reasons really: 1) There wouldn't be a question as to what was going to happen. Who knows what ABR stands for anyway? 2) It makes me feel like there would be butterflies and teddy bears dancing around as the test was taking place (If you listen carefully, you can almost hear a lullaby playing softly in the background). As a mom, I would respond much better to the second name. So, from now on I am going to rename every confusing or scary term I encounter in this adventure called motherhood. Be on the look out for a new medical dictionary on bookstore shelves soon.