Facing the big bad world

As parents we make a lot of hard decisions. Some harder than the rest. Like the decision to send Anthony to school today. At first it was easy. Of course I would send him. I know the school will keep them safe. And I know that they would increase the security today.   We had a warning. We had time to prepare.

What I didn't account for was the chatter among the kids. Monday when the kids got off the bus the talk had already started. The younger kids heard the older kids talking.  And you know that's never good!  That night I explained to Anthony what was going on. We talked about what to do in that type of situation and even went into planning other places he could hide if he needed to.  Then I read that some parents hadn't talked to their kids about it and didn't plan to either.  And while that's their choice I wondered what if something did happen and the kids found out their parents knew it might happen and but didn't tell them.  But then again, I've had people tell me I am wrong for being so open with the boys about my liver disease and the road I will have to take to get to a transplant. It's a big bad world out there. I know for my boys, knowing what's out there is better than them not having a clue.

As the days passed and Anthony got more and more nervous so did I. I questioned myself.  I wondered if I should really send him or not. Then last night we talked about how nothing could happen. Or anything could happen. Tomorrow isn't promised to any of us. In the end, it's our job as parents to know what our kids can handle. Some kids just would not be able to make it through the day at school knowing something might happen. But it could happen any day. For Anthony, I know that keeping him home would only make going to school on Monday  harder. So I put him in the hands of the school. I have faith in the faculty to keep him safe today.

Have you ever dealt with a school threat before?  What did you do?  Back home where I grew up we didn't have a care in the world. My biggest fear when going to school was whether or not Mrs B. was going to make me wear shoes or if someone was going to take my bike and I would have to walk home (or take someone elses).  Do you talk to your kids about the bad in the world and the things that could happen?  I think it's important for them to know what's out there. I'd love to know what you think!

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Happiness is ______ {2014-W15} #happinessis

Its that time again.  And I'm here!  Not sure what happened last week.  Just sorta checked out for a bit.  But I'm feeling good this week.  Just when I was getting pretty good sleep, a certain little boy took a late nap and now we are still up.  I think the melatonin is really working.  I actually got more than 6 hours of sleep on Saturday!  Amazing.  Its a short school week so Friday I think will be a pool day.  I need some sunshine and blue water.  Its not the ocean, but it will have to do!  Now on to the happiness!

Happiness is having Grandma over for a few games of Go Fish.

Happiness is...OK we lost.  But happiness is knowing they played hard and seeing them figure out what they were doing wrong.

Happiness is getting mail from the Easter Bunny.  The boys are loving their knitted Ninja Turtle masks. Anthony said "Wow, he probably though we were good boys and sent us a gift early!"  Alex just looks at his brother with the most serious face and says "But we are not very good boys" Oh Alex, he is honest. There has been all sorts of clashing between these guys!  

Happiness is a neighbor who shows up at my door with a bag full of crab sent in from Maryland.  Man these were good!

Happiness is finally getting the paint done in the boys room.  Tired of white walls, but now I want to paint everything!

Happiness is hanging out with the neighbor even if shes in another yard :)

Happiness is knowing that this boy is still talking about our trip last summer.  Especially because David said he is never making that drive again!  It was a great vacation.  

Its been a bummer of a week.  Lots of stress in the house and friends and myself having a hard time with a few things.  I'm so thankful for any little break of happiness I can find.  It truly keeps me going. Don't forget to stop by Crazy Adventures in Parenting and see what others are happy about this week!

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Got Hope?

I remember sitting in the office with the Transplant Team going over the costs of life on the transplant list. The numbers kept adding up and I lost track around $50,000.  My head was spinning at the cost of medications and procedures.  And by the time we were done, I just wanted to run away and hide.

I was going to be the ruin of my family.  I had just had a baby.  Then a liver biopsy.  I had a tumor removed from my neck and I knew the bills were piling up.  I could see the stress my husband was under being the sole provider and I knew he was struggling.  And worse, now I knew it was only going to get worse.  How did this happen to me.  I was more mad at the financial burden my illness put on my family than I was that I was sick.  I was told I could not work and that was just the last straw.

Most people who know me, know I hate to ask for help.  I'm the helper.  But how could I get though this without help?  There was just no way it was going to happen.  I was going to have to ask.  I put my pride aside and did just that.

One of my transplant buddies off of Twitter suggested I look up Help Hope Live. I signed up and started brainstorming with friends and family on fundraiser ideas.  You can find my page HERE!  My dear friend Stacy, whom you might know from her amazing blog Kids Stuff World and my sister stepped up to help me and there will never be enough that I can ever do to thank them!

Melisa had the suggestion of awareness bracelets and so she designed and ordered them.  We sent out a few emails and shared on Facebook.  And guess what, the orders came in faster than we could keep up with. We stuffed envelopes, printed cards and wrote thank you notes.  It was so much more than I expected. And it didn't stop there.  Pictures started popping up on Facebook.  It moved me to tears and even to this day when I need a pick me up, I go though them I remind myself of the all the people who are cheering me on. So much love and thanks to you all!  I could not have come this far with out your kind words and encouragement.  

From Boston to the Marshall Islands and so many places in between.  Each of these pictures means so much to me.  And this is only a few of them. Thank you so much guys for coming along on this journey with me!  I have hope, because I have you!

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Friday 5: Looking forward

As the week comes to an end I was thinking about all I did this week and what I want to do more of next week.  I've been feeling pretty good mentally and physically and I have so much I want to get done.  In typical me fashion in five minutes I had come up with a list of a hundred things and was suddenly not looking forward to it anymore.  So I cut it back a little.  Like down to 5 little!  Perfect.

Our first San Antonio Talons Game.  I love when David gets perks at work.  There is going to be a Nestle booth set up at the game and so one of the guys at work got free tickets.  Only problem is, he was going to be busy so he gave them to David.  Score.  I have never been to an Arena Football game but I'm so excited. We support out local teams.  Actually David has been a Spurs fan as long as I have known him. Cowboys too.  I guess I married into it.  We also love going to the Scorpions Soccer matches and The Missions Baseball games too.  After tonight, we will need to add a Rampage night.  Why do I feel like one of the few women who really enjoys sports?  Anyone?

ACS Volunteer Orientation.  I can't lie.  I am seriously nervous.  Not because I feel like I'm going to be learning something new.  Not because I am trying something new, but because I am doing it alone.  As far back as I can remember, David and I have done everything together.  We worked together for 5 years, we have lived together for 14.  Its just the way we do things.  For years I have been saying I wanted to do this. But I always found an excuse.  Then at the beginning of the year I found out about SA2020 and I resolved to volunteer.  That day I sent in my application and the day is finally here.  And I'm going in alone!  I'm excited and nervous all in one!

After next week the two following weeks are short weeks at school.  And that means 3 day weekends.  I am warming David up to the idea of an overnight camping trip.  20 dollar fee, some fishing, hot dogs on the grill and clean air.  It will be much needed for all of us.  Anthony has STAR tests coming up and even though he says he is ready for them, I know he always worries about tests.  David has been swamped at work and me at home.  Alex, well hes my carefree guy.  He will just be excited to go on an adventure.  Fingers crossed I can butter up the hubby!

OK,  I'm probably going to irritate some people here.  But I am ready for good Friday.  I really really want a soda.  I know what you're thinking.  You didn't take me for the religious type.  Surprise!  I don't go to church.  But I believe. I know my prayers and I pray every night.  And every year for lent, I give up soda.  I wanted to give up medicine and doctors appointments, but that never happens.  And I am not craving a drink of soda all day, I think I just want it because I can't have it!  Yesterday I was working out back and man was it hot. I caught myself thinking a coke would have been perfect.  Who knows, maybe I will just stick with it, I mean, I made it this far.  Why give in now?!

May 14th.  My baby is going to be 9.  I have a little over a month left. I don't know why this year seems so much more significant.  Hes grown a lot this year and I feel like I am finally losing my sweet little boy.  The other day he asked me about hormones.  HORMONES people!!  Why don't we ever talk about puppies and toys anymore.  Now its stories about his friends and how this girl gave him a bracelet and everyone laughed at him.  Poor boy couldn't understand why the other boys were teasing him.  Middle School is going to be rough.

I know I said 5 but I know I am not the only one looking forward to summer!  Late nights.  Sleeping in. Pool days. 100 degree temps.  Yes, I love that part too!  I can't wait!  What are y'all looking forward to these next couple of weeks/months?

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Happy Donate Life Month!

April is Donate Life Month.  And you know what that means.  Lots of sharing around here. I really have been meaning to write more, but something always comes up. But the house is quiet now, Thank You Ninja Turtles.  I have about 15 minutes of alone time.  I think.

So I wanted to share some numbers with you. Which is funny because I am awful with numbers. Horrible.  And the Hepatic Encephalopathy only makes it worse.  There are days where I look at my 3rd graders homework and it looks like jibberish. But here are some numbers stick with me!

An average of 18 people die waiting for a life saving transplant each day.  

On March 28th there were 121,812 people waiting for a transplant in the US and today there are 121,931.  

15,725 people, including myself are waiting for a liver transplant.  

1,668 are here in Texas.

There are only 7 of us in Texas being treated for Budd Chiari Syndrome. 

I am one of 98 liver patients at the Methodist Transplant and Specialty Hospital here in San Antonio.

I am the only BCS patient in my clinic now.

So here is my plan.  I want to see just how much the numbers change this month!  If over 100 people were added in less than a week, I can only imagine how that number will grow over the next 4 weeks.  

Are you a registered organ donor?  Why or why not?  Has organ donation touched your life?  I would love to hear your stories!  Sharing is how we spread the good word and that's what we need.  More people need to be properly educated on Organ Donation.  Its a scary thing.  I get that.  But it is saving lives.  And what better gift can you give someone than the gift of life?

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