April 23, 2013

just junk

As my dear friend Non-Stop Mom calls it, the following will be a "brain dump". Just the random things floating through my head. They may be serious, they may not be. Just gotta get it out of my head and somewhere else.
Much like a lot of other people I went Saturday evening to Cowtown for the Civil War Days. That was fun, my husband however, didn't share my enthusiasm for the event, and did fairly well at showing it. He claims he didn't know I liked things like this...but when given the opportunity to drive to Kennesaw Mountain while we lived in Georgia with his family. I jumped. And when they wanted to climb the mountain, I went with excitement because at the top was a beautiful view, and civil war cannons. I spent a LONG time in the museum, where there were civil war artifacts. I watched the reenactment they put on, with a smile on my face and blood coursing through my veins. I love this part of history. It was so "revolutionary" for lack of a better word. It changed our path. It changed history. I love it, and I hope that someday my children will share my love of it.
I had a meeting Thursday evening, and it was during the course of this meeting and Friday morning that I realized that I've had my past all wrong. I've lived my life believing that the man I lost my virginity to, was my first love. And that must have been why I was so screwed up. However, I find that not to be the case. While yes, I did love B.D. (initials only here.) and I would have given up life for him, he was NOT my first true love. That was lust. C. E. was actually my first love. This man, he did it all. He gave me almost everything a girl could dream of. The love, the romance, the simple things, support, encouragement, and when the time came for him....he gave me freedom. All the while, I was horrible to him. I treated him so badly at the end of our relationship, that almost 12 years later...I'm ashamed of it. And I cannot apologize enough to him for how I behaved, and how I must have hurt him.
C. left a road of shoes that are hard to fill. My husband is not a romantic. He doesn't buy flowers, I sometimes think he has no feelings. He doesn't know how to show them.  I like to dance. I like to express my love in written ways. I like to quote songs. I like to feel attractive (even when I'm not). I like to be swooned. I like to FEEL important, needed, wanted. My husband isn't that person. I think he got the short end of the stick in this relationship. You see, I expected that once I found someone who would love me, and share with me, and take me on....I'd get the romance, the love, encouragement, support...the simple things. However, I married someone who isn't like that. He's not into the flowers, dancing, kissing, holding hands, snuggling on the couch, romance, THAT love. It's just not him. I don't know if it's because his dad wasn't around to show him that it was okay to do that...or if he just hates it. But it really tears me down sometimes. When I need it the most, he can't give it to me.
We have what I call a poisonous relationship. He hates me, and I hate him. He loves me (I think) and I love him (I know.) There have been events in our house lately that just make me wonder.

Off to other things. I need to get my butt in gear fundraising for CF...which is another thorn in my side. My life is just full of chaos. When I was younger I thought...being an adult would be peaceful, because I would be different than my parents. But you see, I'm just like my parents. I'm a mixture of the two of them. Every day is some kind of chaos. And not because of a schedule, but mostly because I'M in it.
So tonight, I'm going to put on my depressing playlist and just sit here and cry. I have reached my limit of able to cope well. I just cannot do it anymore.

April 16, 2013

Who Has the Positive Strep Test?

That's right. MY kid.
Corban was sick last week, Tuesday and Wednesday. He bad complained of his neck hurting but in that typical mom fashion of mine I chalked it up to sleeping weird. He is my weird sleeper.
Well today when I got home from work one of the first things he said was "My neck hurts." In a groggy almost tear filled voice.
As luck would have it, our doctor's office is open until 6. So we go racing into town (a 45 minute drive) to make it in time. Corban is tortured by the throat culture every time we go to clinic. Well since the glands are swollen behind his throat they wanted a swab. I had to hold him down. He got mad at me of course and his tears broke my heart. However when the Dr walked into the room and said "so..who has the positive strep test?" I was thankful I held him down. Apparently my children didn't get my strep genes. When I was a kid and got strep, I would complain of a sore throat and spike a fever. Not. My. Kids. No fever. No sore throat. Just straight on to all the 'side effects'. My daughter got the rash. Corban gets the gigantic lymph nodes.
Antibiotics can be our friend. I'm only happy that its just strep. I was afraid it would be much more.


I know we all know about the tragedy in Boston yesterday. I know that we're all in an uproar about it. I know that it was wrong, and that I am so mad about it, you could probably compare me to a tornado... I. am. Livid.
What in the world?! My husband was telling me some of the things he was hearing on tv. I followed it a bit yesterday. Up until the point that I found out an 8 year old had been killed. Then I was devastated and even more angry. Then this morning, on one of the briefings from CNN, i saw an article that was something like "what we know". In another area, I saw that there was a 2 year old injured. And then I read, that the 8 year old boy's mother, and sister were injured. His sister was 6. Corban's age. The 2 year old...Rylan's age. and the 8 year old...my daughter's age.
This floors me. I know that terrorists don't care who they hurt, whose life they take, and they feel no remorse. But in my heart..I'm thinking who ARE you!? How dare you!?  I want to take from them. I want to hurt them like they've hurt others. I want them to FEEL what that father feels. I want them to FEEL what other families are feeling! HOW DARE THEM!
I know..I know.. they're terrorists. They didn't care about a single person when they flew the two planes into The World Trade Center, and one into the field in Pennsylvania. They didn't care enough even about their own families, and took their own lives. I get it. I really do. They will never show remorse. But just like the man responsible for the theater shooting in Colorado, and the shooting in Arizona, or Newtown (which hit me hardest.) someone is responsible for this tragedy. And my soul wants them to pay for it. I know that they will.  Just not likely on our terms.
This is why, my friends, on more than occasion I have considered homeschooling my children. This is why I HATE watching the news, this is why I'm so paranoid about where my kids and who they're with. In my mind, they're safest with me.
I am outraged, by this mindless act. And all those people commenting on the local news story, "falseflag" and all that junk...falseflag this. PEOPLE FREAKING DIED. WHO CARES about whether it's a conspiracy. Some stupid facebook page that was "created friday", or whatever other stories you can come up with. Please stop. SHUT your fingers up, keep your nasty comments to yourself (much like Westboro can do) and let people grieve. They need to. Your nasty, hateful comments will do NO JUSTICE to the fact that three people lost their lives. One a little boy...How would you feel if someone took your little boy away? How would you feel if someone wrecklessly took your wife, and your son, and your daughter and hurt them? Would you be angry? You bet. Would you hurt? You bet. Would you want justice? YOU. BET.
Yep, this post isn't helping anyone. It's not giving you knowledge, it's not teaching you a lesson, it's not anything. It's a giant rant, from a mom, a wife, a daughter, a sister, a friend. Have compassion. Love people. Help people. Do the right thing.
Guys, all I'm saying is.... this is getting old. I heard a joke once, about a father and his kids in church. The kids are giggling and the dad whops one on the back of the head and says "Hey. God don't think stuff's funny." Folks...God doesn't think this is funny. God is crying tears just like the rest of us. His broken heart, out on his sleeve, just being trampled by careless, idiotic acts of nonsense. And this isn't about guns, it isn't about banning this and that. I just want to yell at the people who have said "well when are we going to ban bombs, and backpacks, and hoodies? when are we going to ban  *insert whatever here*. Nothing change. It will all remain the same. Violence, vigilance, and tragedy. That's what the world has come to in less than 100 years. It won't last much longer folks. Not at this rate.

April 13, 2013

Why We Fight CF

Obvious reasons we fight Cystic Fibrosis are our son Corban HAS it, our son Rylan may carry it, and CF is fatal.
I want to show you a day in the life of Corban. And let you in on things he'll deal with in the future.
Let's visit a Monday morning for Corban. I get Corban up at 6 am. He doesn't need to be ready for school until 7:45 am. He usually chooses to eat breakfast first thing. So we start with 4 enzymes, a vitamin D pill, an omeprazole pill ( you may know this better as prilosec.), a nasonex spray in each nostril, two puffs from an albuterol inhaler, and a CF source chewable vitamin. (He has this bottle left and then he has to learn how to take a giant horse pill because they have stopped making this. Once he's finished with his breakfast he gets dressed, brushes his teeth and starts his first round of treatments. Most of the time he does his vest. Sometimes we don't do it in the am, but those are generally bad tummy days. While he vests in the am he does hypertonic saline breathing treatments. Basically just very salty water he's breathing in. Once that's finished he gets to relax before school. There is a big bit of trust required between him and me here, because I leave for work after setting him up.
Once he gets to school its easy sailing until snack. He walks himself to the office and takes his 2 enzymes for snack then back to class. He's only a half day student this year. When he gets home from school, Dad feeds him lunch. Another 4 enzymes. A few hours later snack and another 2 enzymes. I get home around time for dinner, and he usually helps me cook it. He loves cooking. When we get done with the meal and sit down to eat he takes another 4 enzymes.
After a little more play time it's time to get ready for night time meds. He takes Pulmozyme breathing treatment, along with his vest again. And because he's so awesome, he takes another hypertonic saline. He then does a nasal rinse. Last year he had a sinus surgery to first and foremost remove his tonsils, adenoids, and a nasal polyp; but also to clean out his sinus passages when were ravaged with "CF disease" which basically means he was full of thick snot. His nasal rinses began after that to keep him clear. It isn't 100% effective, but does a nice job.
Now, he has yearly blood work and x-rays, but a trimonthly visit to his CF Specialists. Each year his vitamin levels, liver enzymes, and blood sugar levels among more are monitored.
Corban is pancreatic insufficient. Its been said his pancreas simply "doesn't function". This is why he takes digestive enzymes. However, he's not diabetic so I'm lead to believe it must function in small amounts. He will eventually begin dealing with Cystic Fibrosis Related Diabetes. A class of diabetes all its own. Most people don't even know it exists. Imagine my non-surprise. Most people don't even know CF exists.
Over the years, Corban's body will begin to deteriorate. Much like yours and mine, only..much sooner. He'll start to have trouble breathing. His organs will start to go. Unfortunately, I can't touch much on this tonight as it is striking me as much too painful. I promise to address this on a day when I can emotionally handle it. Tonight though, I just hurt knowing that someday I will lose the first boy I ever loved unconditionally. My first son.
Understanding why God gave us this, is beyond me. I know I'm strong enough to handle it. He gave it to me, He'll hold my hand through it. But why he saw fit to give this burden to me...of all people...I'll NEVER understand until I can hold that conversation with Him.
This is why we walk. This is why we plead. This is why I cry. This is why I love.
Please help if you can. We can cure so many other diseases. We can treat so many other diseases to extend the "normalcy"...but CF...inevitably takes over..and claims the life of the person who has it. Please visit Corban's Great Strides page and donate anything you can. This is the only chance we get to help them out. Our cure is in research. Our research is funded by donations. Unlike so many other diseases...the CFF does not get any federal funding. Your help is our tomorrow.

April 11, 2013

I found a lump..

Okay okay I know its not CF Related but CF doesn't encompass my life. I'm also a wife, a daughter, an employee, a friend.
Let me give you a little back story. In June 2012 I had a total hysterectomy. While it's referred to as "total" that merely means that my cervix was taken as well. I have one ovary. I do not take hormone replacement therapy. I LOVE my hysterectomy. There's certainly something to be said for KNOWING that you won't randomly begin bleeding like a stuck pig. Therefore I could deduce two things. I was not on or near my period, nor am I possibly pregnant.
I had noticed a tender spot one morning as I got dressed and really thought nothing of it. Until a few days later it was accompanied by a lump. I had mg husband verify I wasn't crazy. It was there. Lucky for me I was able to get in to my Dr the next afternoon. She looked, prodded, determined there was no infection and because I'm not nursing it wasn't a clogged duct. She scheduled me with an imaging office. That was today.
Now. I know that breast cancer has a history in my family. I know for sure that my grandmother had it when I was about 10 or so. So my alarms were going off to say the least. Something else I had to consider, I was blessed in this area. A little too much. I prayed about it, fretted about it and then basically just let go. If it was, it was. If not, even better.
I arrived at the clinic in my typical fashion. Running behind. They got me in quick, did the ultrasound and that was that. I learned that mammograms are not done on women under 30.
I also learned that at the moment and hopefully forever...I do NOT have any markers of breast cancer. However I should keep an eye on this "lump" that was diagnosed as "dense glandular tissue" and see my doctor should anything change or anyone else in my family be diagnosed with breast cancer. To say the least it was a relief. However, it did open my eyes.
Ladies, please do your self-exams. Please don't be afraid to look silly if you find something. The peace of mind is more than that feeling.  I don't want to diminish in any way the fact that cancer is very real. I definitely have a different sense of admiration for anyone who has gone through this or is currently going through treatment for breast cancer. You are my heroes.

April 10, 2013

I hate CF..

I really really hate CF. Corban has been sick. He got sick Tuesday morning. Stomach upset, fever, chills, vomiting, headache. All of these things combined make him a sleeper. He just sleeps when he's sick. Really doesn't care to be snuggled or anything. Makes me sad.
He hasn't felt like eating, which is bad. He hasn't felt like drinking, which is bad. No dehydration needed, no weight loss needed. We can't afford it. His health can't afford it.
Today, I took the day off because we had a freak "spring storm". I'm not sure how this was a spring storm..since there is currently ice everywhere... but hey, you take what you can get. Anyway, those storms had some crazy lightning. Which woke Corban up. He kept me up a long while just talking. Telling me wonderful stories, talking about God and how He makes the rain and clouds. Reminding me how I always say that thunder is just God saying hello. But you know what o got from all of that? Snuggle time with him. He has reached a point where I'm doing well to get a kiss in the morning before I leave. Snuggles don't happen. But last nights snuggles rolled over to today. We spent the morning curled up together on the couch watching The Lion King. Rylan even joined us.
As I laid there with him though, I thought " what would I do if I didn't have this?" If God never gave me my kids what would I do? Courtleigh is very independent. Of course she's almost 9. Corban is going on 6, and while I can barely get a kiss out of him...he's by far my most affectionate child. He will tell me 1000 times a day he loves me, lay his head on my shoulder, and hug me. The other two, they're almost like best friends. They will give me hug and kiss and "love you mom" before bed and when I leave in the morning. I love my kids. I really couldn't live without them.
Which reminds me .. my days with my kids are not guaranteed. But it feels like even less so with Corban.
Y'all ... we have GOT to cure CF. I cannot bear losing any of my children. Please go to our website and donate if you can. Without donations we'll never get the cure. The CF Foundation gets no federal funding. No help.
Please help.

April 7, 2013

Things I Wish People Wouldn't Say

There really are things people should think carefully before they say.. If you're truly curious, ask in an honest "I'm curious" manner. Oh! Also, don't just assume. You know what that does. Most of us ("us" being CF parents/caregivers) are more than willing to divulge you in any and almost all information you could ever, ever want about CF.
Especially for a CF Mom like me(you know, the over-sensitive type), some things are just top notch irritants. Others will send you into a depressive spiral you haven't seen since the day you got the diagnosis. Let's review a couple. Great suggestion from my Buddy over at Real Life Parenting.

1. This is the number one offender for me, personally. "Oh, so he'll have to have special classes. Will you need special teachers for him?" Well, yes, I will need special teachers for him. But the specialty they'll require will be more likely a gentleness about them, flexibility, and sensitivity to particular signs that may or may not be unique to Corban. He will not require special classes. 
You see- Cystic Fibrosis is often confused with Cerebral Palsy. I believe because as someone who is around it daily, I probably slip and call it CF instead of outright Cystic Fibrosis. Now, I have a very very dear friend who has a grandson with CP. He is the coolest kid I've met. Aside from my own of course. However, CP and CF are two very different afflictions. They affect different areas of the body. 
So, no, Corban will not require special classes. He will require what is called an IEP, but that is mainly just to protect him as a student and me as a parent, should he need to be hospitalized (knock on wood) at any point, or fall behind due to illness. This also will address medications in school, special snack and drink provisions, among other things.

2. This one is the second most common in my life. I have heard this every single time I speak to someone about CF who isn't...in the circle if you know what I mean. "Well, I hope he gets well soon."
No. You don't understand. He's possibly as well as he'll ever be. CF is degenerative. As in, he will get worse throughout his lifetime. 

3.  "How do they fix that?" This comes in many varieties. I've heard things like, "so that's like thyroid problems" or "like diabetes with insulin". Many people assume, (there's that word again) that it's just like any other easily "fixable" issue. An ear infection, with proper treatment, goes away. CF never does. CF doesn't have a cure. (Neither does Diabetes.) It has treatments, like diabetes does with insulin. Diabetes is a great example, as it complicates CF.  With CF...you eventually end up with diabetes. Rates are around 50% of all CFers. Corban is pancreatic insufficient.. That means it doesn't work. This is where diabetes falls into place. We have been told, not when but if. Again, not cureable. CF causes deterioration over time, and inevitably claims the CFers Life. 

Our goal with the Great Strides Walk each year is to help continue to raise those funds to research cures. There are studies out there. We just need MORE. There are 2000+ mutations of the CFTR gene. We need a cure for all of them. 

So, to recap, if you don't know...just ask. I'm more than happy to share! Those are the top three offenders that have come across my path in my feeble 5 years experience. Number 3 by the way, is one that on the right day, can send me into a downward spiral.

April 5, 2013

Give Back to Cystic Fibrosis

Well, I've been trying to plug this page for a long time now, here and there.Corban's Donation Page for CF. You can go there and read a little about Corban, see his wonderful picture, and donate. Donating will help me beat Non-Stop Mom and prevent me from having to wear something absolutely hideous!

Here are a couple of other things going on here locally...
I will be at the Poker Run with Mary Kay. QuarterMania is tomorrow, I know it's short notice, I'm behind.
This is important. Print this flier and bring it with you. If anyone would like to go with me, I can create a list, and call ahead for a table. Let me know. I will be there.

April 3, 2013

My Pizza Addiction

My reason to live really is my kids. Even though currently, they are really testing my sanity. But sometimes I think that God put me here to love Pizza.
Wednesday nights can get a little chaotic. The kids have AWANAS and I have Bible Study. I generally get home around 4:30, and would be able to get dinner done before church. Tonight, I just didn't feel like cooking, so I ordered a pizza. I was introduced to Casey's pizza as a teenager, when my family lived in a small town that didn't have a pizzeria. I learned to love it. When we moved back to our current city, we didn't have access to Casey's Pizza. I LOVE pizza. Pizza is easy, pizza is quick, and under most circumstances, I don't really have to lift a finger for pizza. The downside to pizza, though, at least in our household, is it's "gassy". Pizza is greasy. Grease equals gas in a CFer.
For a normal meal, Corban would take 4 enzymes, and that would be enough. For pizza, I typically give him 5 just to help counteract the grease. The good thing is that most times it works great. It seems that as days go by, I can find a million things to add a notch on the "Things I Despise About CF" rack. I hate that foods that I absolutely adore, give my son a tummy ache. I hate that the tummy ache means he'll have gas. I hate that I have to rub his tummy at night to help him sleep, or he'll never be able to sleep. I purely hate CF.
I love my children.
Although, quite off topic, I think they're intentionally trying to drive me insane. It's an hour before it's time for church. The boys are screaming and throwing things, and my daughter is BUGGING me about making scarves with old t-shirts. I don't think she quite understand that there are criteria that has to be met before we can do such a thing, like the shirt needs to be cotton...not spandex, or polyester. I can't wait until bed time tonight....SILENCE. Yes, that is what the Dr. ordered.