Trials and Tribulations

Wow, I can't believe it is the end of May already. Where has the time gone? I have talked a lot about the trials and tribulations that my family and I have faced. Somehow we have all made it through and are continuing our fight. There are two main things people, that I could not have lived without....my children.

Tavion, is so sensitive and sweet. He is a protector and always tries to make me feel better. I hide my feelings from him and try not to let him know anything is wrong, but he always comes through with the hug that is needed at just the right time. He is always telling me I'm beautiful. It doesn't matter if I'm wearing my old holey t-shirt with shorts and my hair sticking up like Don Kings', it doesn't matter if I have on my glasses and no make-up, or if I've brushed my teeth yet. He just pipes up with, "Mommy, you are the most beautiful in the world". Hearing those words make your heart warm and how could you not feel a little better.


Jaiden, is quite another character all together. He gives me hugs and kisses and he still likes to cuddle, but he is definitely a ham. He cracks me up all the time. He says things out of the blue and I have no idea where he gets them. He talks like he knows EVERYTHING, even though he has no clue and it is really funny. We had watched Buffy the Vampire Slayer (the original movie with Kristy Swanson) and after that we drove by the cemetery and he asked if there were vampires there. I told him no, there were only dead people under the ground and they were not going to come back. HE tells ME that he is going to dig up the dead people so they could kill themselves. What? Really? My four-year-old did NOT just say that. Yes, he did. I can't do it justice how he said it, but it was really funny. I was trying to keep a straight face and said, "Jaiden, they can't kill themselves, they are already dead!" Anyway, dead people aside, he is always acting goofy, whether he's telling jokes that make no sense and cracking himself up so you just have to laugh or putting on my green, plastic, St. Patrick's day Leprechaun hat and pretending to be Michael Jackson, he can always brighten my day.

I guess the moral of this story is that you don't need to go far to recognize the little gems in your life. No matter how bad it gets, there are little angels waiting to lift you up. I love you guys!

What if...

**Warning: I'm going to get serious for a minute so if you want to laugh, discontinue reading.**

...yours life changed in an instant? What if your whole world got turned upside down? Would you throw yourself a pity party? Would just say "oh well, it is what it is" and move on? Would you lash out at everyone around you and alienate yourself?

You may think you know what you would do; but the truth is, unless it has happened to you, you don't know what you would do. I have had my life disturbed a number of times. Family members dying, my mother getting/fighting/beating cancer, scares with my kids, and my various health problems have all been dumped in my lap. No matter how bad I felt, I stayed strong, I persevered, and I came out okay on the other side. This time, I'm not so sure I'm going to come out okay on the other end.

A couple of months ago I went into the ER because my blood pressure was way to high. The Neurologist that I saw performed his exam and then asked me if my feet have always been like this. WTF? I always thought my feet were fine. I knew I had high arches but he also mentioned hammer toes and I guess I have those to0. In relation to these findings, he mentioned a rare genetic disease called Charcot-Marie-Tooth Disease. This disease causes neuropathy and I have known that I had that for a couple of years but we never knew why. Nobody else in my family had this disease that we knew of so really, what was the odds that I would have this rare genetic disease out of the blue? I researched and the more I researched, the more it sounded like me. I went to my follow-up visit with a different Neurologist and I mentioned this disease and this doctor and his attending kind of blew me off because I had no known family history and it's rare. They did some of their tests and then realized that maybe the first doctor was right. They sent me for a genetic blood test and for an EMG.

As my luck would have it, all of the results came back that I do have Charcot-Marie-Tooth Disease. It is a progressive disease. I fall somewhere in the middle as to how fast it will progress. I'm unsure of the exact subtype yet but I have to go to the Muscular Dystrophy Clinic to be evaluated. This disease is one of the 40 diseases that fall under the MD umbrella. It is rare because only 115,000 people in the US have it. There must be at least 200,000 people with it to get off the rare list. There is no cure and the only treatment is to treat the pain and physical therapy to try to keep your healthy muscles healthy.

For a while I was throwing myself a pity party. I was sad and moping. I've cried. I have felt so alone and like nobody understands. I think that was good. In a way I was grieving because I did lose a part of me. I won't ever be able to walk a long distance again. My hopes of joining the FBI are gone. One day I may end up in a wheel chair. I think I have grieved what I needed to and now I'm ready to fight. I'm going to live my life the way that I want to for as long as I can. I may be slower, but I'm not going to give up. I'm going to be happy and fill my days with happy memories. This disease is NOT going to win. I may not beat it completely, but it will not rob me of my happiness or of who I am. CMT, you can suck an egg for all I care!

If you are interested in reading more about CMT, you can follow the link here.

You are only as old as you feel...

...whatever. I'm 30. I get it, in the great scheme of things, 30 is not all that old. But I feel like I'm 100! Okay, so I don't really know what being 100 feels like, but I imagine that what I'm feeling is what 100 feels like.

I'm just now beginning to recover from my weekend. Saturday was a big day. The boys bowl on teams on Saturday mornings at 10 am. We usually are pushing 10 am getting to the bowling alley which is all of about 6 blocks from my house because we I like to sleep in as much as possible. The boys bowl on different teams so we do a lot of back and forth across the lanes and watching the other end of the room, etc. It really does help when Eugene is there because then we can switch back and forth...unless of course he is playing with his stupid cell phone. In that instance I text him to tell him to pay attention to the boy he is with or he calls me from half-way across the room just because. Since Jaiden is only four and the others on his team aren't much older, his team is usually the last one done so we end up spending two hours at the bowling alley. Whew, they only have two more weeks left!!!!

After bowling on Saturday, we had to go home and gather our stuff for Tavi's birthday party. We decided not to have a big party this year, Tavi just wanted the family to go to Chuckie Cheese. So...I had to go to Wal-Mart and get the stuff for the party and Eugene went to pick up the cake, then we had to go home and get our camera and coupons (can't afford Chuckie without coupons!), and Tavi's friend got dropped off so we headed to Columbia with three boys screaming in the back seat. My mom, her boyfriend, my brother, and his friend met us at Chuckie Cheese so we ordered pizza and got tokens and turned the boys loose. They ran me all over the place. The pizza arrived so we took a break from playing and ate pizza then we had cake. My friend, Kibby, came and had cake with us and brought Tavi some gag gifts that he absolutely LOVED! Then everyone left and the boys made us play some more. Eugene bought like 300 tokens so we played...and played...and played some more. My poor body ached in places that I didn't know existed. My back hurt, my knees hurt, my shoulder hurt, and most of all, my head hurt.

There is a reason why I really don't like other people's kids. The kids there were running all over the place screaming at the top of their lungs and being downright rude. I really wanted to start beating the crap out of whooping other people's kids. I know, I know, it's Chuckie Cheese and it's a place for kids to run and scream, but come on. At least teach your kids some manners and respect. One kid came up and tried to take Jaiden's tickets that he was earning and I had to stop him from that, then a girl came up and tried to take one of my balls from the skee ball game. These kids were pushing people and some of the adults there weren't any better. I. spent. FOUR. hours. at. Chuckie. Cheese. I don't care if I ever go back! We finally got done and the boys came out of there with over 1000 tickets thanks to Mom, David, Aaron, and Jason (me and Eugene included too) so they got their prizes and we were done. We drove home with the three boys in our car still screaming. I thought they would have worn themselves out but no such luck. We dropped Tavi's friend off and then went home. Tavi and Jaiden ran around the playing with the fart toys Kibby gave Tavi (she gave him flarp and a whoopie cushion along with other things). Eugene and I collapsed on the couch.

Sunday, Mom asked me to go shopping with her and I did. We had so much fun. I love spending time with my mom, just me and her. We went tanning and then we were going to go shopping and we drove by Cato's. Neither one of us had ever been in there before so we stopped and O.M.G., it is my new favorite place to shop. They had cute clothes but they were CHEAP! Mom bought me a couple outfits and her some things too. We finished our shopping and stopped for an appetizer at Applebee's. We spent three solid hours shopping. We were both exhausted. I got home and thankfully Eugene was cooking dinner so we had dinner, I slipped into my new comfy lounge clothes, watched Wrestlemania, then went to sleep.

It was a good weekend, but very tiring. Now I'm just waiting until tomorrow when my first born will turn 10 years old. *sniff**sniff*. Ten years ago right now I was in labor. My how the time flies...

He did...what?

My boys are definitely the epitome of the saying "boys will be boys". I feel like I am constantly yelling at them to 'pick up your toys', 'pick up your room', 'who peed on the toilet', etc. While I complain all the time sometimes, I couldn't imagine my world without them. My existence would be utterly boring.

Tavion is a sweet, sometimes shy, quiet, and reserved boy. He has the biggest heart and loves to help people. He constantly worries about everything. If I so much as say 'ouch' (and try not to let the profanities flow), he is right over me hovering excitedly saying "Mom, what happened, are you okay, let me help you...". Sometimes he gets rowdy and gets in trouble. Other times, he is hilarious! I think he gets his sarcasm from me, not to mention he is theatrical. The other day we had just gotten home and I had the house key in my hand. As I went to put it in the door, he said "Mom, you shouldn't have to do that". I said "I shouldn't have to do what? Open the door?" HE came back with "You shouldn't have to do everything. You know, you are 30." WTF? Really? Thank you to my snot-nosed dweeble sweet, adorable son for POINTING OUT HOW EFFIN OLD I AM! Of course he thought it was funny and took off running. I think he could tell by the dumb-founded look on my face that I was getting ready to sit on him and tickle him until he couldn't breath and begged for mercy.

Now on to Jaiden. Oh Jaiden. I don't even know where to begin about Jaiden. It's something every night with him. He has the most energy of any kid I have ever seen and he does not hesitate to say or do what he thinks. This has gotten him in more trouble than I can count and it has also provided more laughs than I can count. Jaiden has an obsession with Michael Jackson. (Thanks for that Eugene.) Jaiden loves walking around wearing his Michael Jackson t-shirt and watching his shadow on the wall as he tries all of the Michael Jackson moves. Jaiden also loves to walk around naked with nothing but his underwear on. Can you see where this is going? We live across the street from a nursing home and the public pool. All I can say is that I am glad it's winter and that the pool is closed. I had the inside door open on one of our nice days to air out the house while I was cleaning. I walked into the room and Jaiden was standing right inside the door, looking at his reflection in the glass with his hand cupping his private parts, wearing nothing but his underwear, doing Michael Jackson's hip thrusts. OMG! It was the funniest thing I had ever seen but I had to keep myself composed while I yelled at him to get out from in front of the door doing that.

Wow, I'm sure the little old ladies across the street got an eye full that day!

Help...

Wow, it's been a while since I have posted. Life has definitely been hectic for me lately. I took a trip to Virginia (will post more about that later) and will be going to New York in April. Overall, work and kids have kept me extremely busy.

One thing that has happened was that I was profiled on KOMU for a 'Your Health' piece. I worked with a reporter so she could do a story about what I'm going through and the problems I'm having with health insurance.

If you know me, you know that I've been battling some major health problems for a while and my doctors tell me I need a surgery but my insurance won't pay for it. Please watch this piece and if you know of anyone that could help me, please let me know. Thank you!

Click here to watch the piece on KOMU.