Balance Awareness 2014

Sometimes just talking about myself gets a little boring.  Today I want to share someone with you. Someone who has shared me and my story and has been such an angel in my life. Remember my Mrs February feature?  No? Well in 2012, my girl did a 12-12-12 project on her blog Abledis. Each month she featured a different disorder or illness. She dove in and learned as much as she could about it. She would share photos of her at her own doctor appointments rocking Liver Disease Awareness shirts and she has gone though a few Hope for Kim bracelets. Even her Gram rocked one. Thanks Gram! Check out my feature HERE! Like I said, shes been an angel!  And now I get a chance to share a little about her!

Marissa has a vestibular disorder. Vesti-what? Vestibular. Its a balance disorder. Stop by the Vestibular Disorder Association to learn more about what she goes though on a daily basis. Its not easy. She is a Rockstar!

Balance Awareness week is September 15th - 21st. And to help support the cause she created these shirts. 100% of the proceeds are going to raising balance awareness. So lets rally and help a sister out. Click on the photo and order your shirt today. There are 6 more days. Buy one or three.  No judgment here!Rock it during the week and then again and again.  If When you get a shirt, take a photo and share it with me.  Ill send you a little something! I had someone send me an email once. She said she saw my blog written on someones shirt and wanted to see if it was real. Yup, I'm real. Marissa is real. Our struggles are real. This is all real. So come on! Help us get the word out!


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Thankful Thursday: Its almost that time

The boys and I were talking the other day and one asked how much longer till Christmas.  Once we figured that out I had a little freak out because that means my most favorite holiday of all is coming up. Thanksgiving Day!  Oh how did it just sneak up on me like this.  I haven't even tested out any new recipes yet!!

I believe that we should find something to be thankful for everyday but a holiday, once a year, with food and family and friends...Ill take it.  Because lets face it, every one of us has something or someone to be thankful for.  With my health hanging in the wind, I will be the first to say it.  I have needed help.  I have leaned on my friends and family for support.  I have been blessed and I am thankful for it all.

But today I am going to be thankful for my boys.  School starts on Monday and I will be the first to say it. I'm not ready to send them back.  My oldest is starting 4th.  He can't wait to see his friends and make more and go to PE!  My baby is starting Kinder and I am or may not have a meltdown when I leave him.  I know that he will be fine.  He will be fine, right?  He has been begging to start school for the last two years.  He got to go for speech class but twice a week for an hour was not enough for him. He too is looking forward to making his own friends so he wont have to play with his brothers friends anymore. Social butterflies.  Lets just hope it doesn't get them into trouble!


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Enjoying the last days of Summer!

Some days I'm strong. Some days I'm not.

There's been a lot going on around here. I've been struggling these past few weeks and it's starting to show. Tonight the boys saw me breakdown. Well more like they eaves dropped as I cried to David that I don't want to get sicker and that I can't do this by myself. Dramatic much? Yea. It was a rough night. But it's been on our minds a lot more than usual.  I can feel myself getting weaker. Most days I can't keep my food down or I just plain forget to eat.  Taking a shower is exhasting. I can't watch TV without falling asleep.  I've read the same book twice but could not tell you what it's about. Ive locked myself out of the house and my wort fear of all finally came true. I left the stove on. But this is my life. All we can do is enjoy the good days and make it through the bad.  It's time for some planning and rethinking.  New schedules and responsibilities. And I'm not ready for any of it. But if I want to get better I have to get sicker. 

Yesterday in the car, completely out of the blue my oldest asks "Mom when are you going to the hospital?"  October I told him. My next appointment is then. "No Mom, when are you going to get your new liver?"

Oh boy! It's been a while since we have had a talk about this. But I've always been honest and straightforward with him. So I reminded him that it wasn't my turn yet and that I was still healthy enough to not get one yet.  And then the little one had to add his own thoughts. "Yeah"  he said. "Not until she gets sicker and so sick she's almost dead!" 

Well hell. The one who I thought still had no idea I was even sick sure has something to say. But what could I say to that. So I agreed. I told them it was gonna be a long road. Anthony asked why we couldn't just find one now and thankfully David stepped in and reminded him that's why we advocate for a organ donation. That's why it's important to register as a donor and let our friends and family know our wishes. 

They let that sit for a minute before asking David to turn the radio back up. 

Anthony has known from the very beginning that I am sick. We have had many talks about the liver and he asks questions very openly. Alexander has never really taken note of it. Sometimes when he jumps on my I will tell him he has to be careful because I hurt but he has never asked much about it.  He does listen very carefully when Anthony and I talk about livers and does know that I need a new one though.  He asked once if he needed a new one. And when I told him his was perfect he offered to give it to me.  My sweet boy.  He has already given me enough though. If it weren't for him I would have never even know I was sick until it was to late!

I hope I'm doing right by being so open about this all. Before I even talked to Anthony about it the first time I thought long and hard about it.  I know he is a worrier. He would hound me until I told him the truth and nothing but, so I did.  Alexander I think I will be a little more cautious with. His little heart was about broken when I told him I would not have his liver. He is a giver.  And I know he will take it a lot harder and personally.  He will worry more and check on me elven more than he already does. And I'm just not ready to put that on his shoulders. Not any more than he is to carry it.  Ofcourse I will continue to answer every question as honest as I can. But I will also hold myself back a little. Just for now anyways. 

Have you had to explain medical problems to your children?  How open are you about it?  Do they know about things like cancer and other illnesses?  And please if you haven't already, register to be an organ donor. 

National Minority Donor Awareness Week

Lets be honest.  Organ Donation isn't something that we talk about on a daily basis.  It isn't or at least, wasn't talked about when I was growing up.  Not at home and not in school.  Because most people don't think about it until it happens to them.  Until they or someone they love is told that they need an organ transplant.

While it is not a deal breaker, transplants done with donor and recipients being of the same ethnicity have a better success rates.  I remember when the doctors asked me what my race was. When they explained this I was for sure that my only chance was going to be family.  But when they said that I would have to have a cadaver liver, my family is out of the question.  I need them all safe and sound and cheering me on though all this.  But then I wondered how many of the kids from back home are organ donors.  And if they even knew it was possible to take something out of someone and give it to someone else.  So I asked, and was blown away at how many had no clue.

I know today is the last day of Minority Donor Awareness Week but that does not mean we can not share the good word with our family and friends.  Talk about it.  Educate yourselves and then educate others. And please be sure to visit Donate Life America and see what steps you need to take be make it official in your state.  If you haven't already, register today!  Thank You from myself and the other 123,210 people that are waiting for a life saving organ.

(hover over your state and see the numbers)
Has your life been touched by organ donation?  I would love to hear about it.  How much did you know about it beforehand?  Have you registered to be a donor?

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