Weekend Trip

One of the things I am most grateful for is the energy and healthy I have right now.  Its not the best, but it could be so much worse.  I always wonder when it will be gone.  How bad it will be before it gets better.  But all I can do is make the most of each day.

So last week when I was in the middle of my fundraising freak out, David suggested a weekend trip to Austin.  Hes been there for work only and the boys and I have never been, so we pack up Saturday morning and took off.  Thanks to rewards points we got a decent hotel room, check in an set out to explore.  And I think I fell in love.  What is it about Austin that is so chill.  We parked at on of the many parks.  And walked down a few blocks to the Capital Building which was beautiful.  As was the lawn, which I think was the boys favorite part.  After scolding the boys about walking on the grass, David pointed out that everyone was doing it.  People had blankets down and were just hanging out.  And there were squirrels everywhere.  Alex must have chased everyone of them.  Anthony stuck to rolling down the hills.  And of course after an hour of exploring both boys were beyond worn out and grumpy so we called it a night.  The next day we pretty much spent at the park.  The first one was packed so we found another one and boy was it perfect.  The boys had the whole playground to themselves.  And they had a splash pad.  A little water sprinkler park that was a huge hit with my two water lovers.

It was just what I needed.  Even though the boys were not on their best behavior.  The fighting over who got to push the elevator buttons was far outweighed by their giggles as the rolled and flipped down the grass.  Or Anthony frozen because he got charged by a little squirrel.  Good times.  Good memories.  All though, I think its about time for a mom and dad getaway next :-)

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Tears

"Tears are words the heart can't express” 

Its not news that I need a new liver.  I have know for 3 years now. And this week marked my first whole year of being listed on the liver transplant list.  When people find out they always tell me that its amazing that I'm still smiling or ask how I can say that with out bursting in to tears. If I don't laugh, I will cry.  And I hate crying.  I can count the number of times I have cried over being sick on one hand.  Never a major breakdown.  Until today.

I have had three years to soak it all in.  To accept the changes and come to terms with being "sick".  I though I had done it all. But this morning, I was filling out an application for the National Transplant Assistance Fund.  Its an organization that helps people like me who are waiting for or have had transplants raise money. Wait, who is having a liver transplant?  Oh crap, its me...how could I forget.  I didn't.  But all of a sudden it hit me.  My life is nothing like I had planned.  I am a 28 year old wife and mother who needs a liver transplant.  How did this happen.  I know how it happened, but it was like I was just finding out all over again.  Except this time with tears...lots and lots of tears.

Such a roller coaster of emotions. And all I can do is breathe through the tears.  Dry my eyes and keep moving forward.  There is no avoiding it.  So I am going to hit send on the application and pray that my "community" will be willing to help me.  And I also need to commit to helping my community as a way to say thank you back.  Brainstorming.  Beats thinking about having my insides ripped out and replaced. Seriously, have you seen the scar from a liver transplant.  I will have to get someone to share a picture of their scar on here for me.  Ooh I should do an interview :)

I seem to be back to my silly self, so I'm off to enjoy the rest of the day with the boys.  Thinking about going on an adventure tomorrow. I could use a little vacation.  Especially after a day like this!  Thank You all for your prayers and encouragement.  It means the world to me.  And if you got this far, God bless you for putting up with my rambling.  Promise to be back with something positive and happy!  Promise!!

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One Year

One year has passed.  One year I have waited.  One year.  I have been on the UNOS transplant list for a whole year.  Really?  I cant believe it. Emotions are over flowing. My mind is running a hundred "what ifs"  and "whens".  Its hard to explain really.

The hardest part about this journey is the not knowing.  I have been stable the whole time.  Never any major setbacks.  Like clockwork. I get my MRI and ultrasounds.  I have my yearly endoscopies.  And while Portal Hypertension and ascites have been brought up, they have not had to be addressed just yet.  I mix and drink my morning meds and every night my alarm goes of and I take the rest of them.  All pretty stable.  But.  I never know what tomorrow will bring.  If there will be a tomorrow.

Every few months, Anthony brings a bug home from school.  Starts with a cough, then fever joins.  Then Alex gets it...then David.  I must have a very good guardian angle, because every time, it passes on me.  I may get a sore throat, but never anything more.  Knock on wood.  But something as simple as a cold, could bring me down.  I was told to report any fever over 100.  See with my liver failing to do its job and filtering out all the toxins and other bad stuff, something so simple could turn in to something much bigger.  Every time I get a stronger pain, I wonder if time is running out.  When I look in the mirror at my bloodshot tired eyes, I pray for no yellow.  I dream about getting sick. I can feel my body getting sick.  But still they say I'm stable.

 I feel grateful to have made it this far so well.  I feel sad for all the people who have waited longer.  I am relieved to hear stories about friends who are doing great after their transplants and my heart aches for the few that are still sick after theirs.  I feel guilty for being listed when there are others who so desperately need help.  Somedays I feel like I could conquer the world and other days I wonder why me.  I'm frustrated that there is such a shortage of donors and I'm  embarrassed that I never though much of it until I needed one.

What have I learned from waiting?  I have learned that I need to put myself first.  If taking my medication makes me sick to my stomach, the I will have to schedule my appointments for later in the day when the effects have passed.  I am learning to say no.  I am trying to not be so hard on myself for not being able to do things I used to be able to do.  Ive learned to trust my instincts and to know my body better.  Its not easy, but there is no other choice.  This is my life.  And its not going to get any easier.  Ive learned to accept that, even if it took a whole year.

Who knows how much longer the wait will be.  But Ill be here, waiting.  However long it takes.  Fighting.  Living.


There are 111,344 people waiting for a life saving transplant as of today 12:14am tonight.  Are you a donor?  90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor. Stop by Donate Life America and register in your state!  And if you do, let me know.  One of my year goals is to get 5 people to register and I need 4 more :)  

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Stress Sucks

So much going on, so little time to let it all out.  My mind has been a blur this past week. Im ready to get back to the normal craziness, but worried as well.  It just seems like sometimes I could very possibly die...of stress.  I mean, its bad enough that Im on the liver transplant list.  Whats worse is that its all silly things.  Well most of it is.  Things that I shouldn't be and have never been so stressed about.  But now all of a sudden, they are bringing me down.  Not a good feeling.

I am trying to find a positive for every negative.  Seems to help.  For example, I am going to miss my baby sisters graduation.  Its insane how upset I am over this.  You would think she was my child.  Well, she pretty much is. There is a bond there, that is unbreakable.  Stronger that just being my little sister.  She is one of my very best friends and I am so proud of her for making it this far.  I love you bug!  I made her promise that she will never again walk down an isle without me!  And the positive of it all, is that once shes graduated, shes going to be living here with me.  That is a positive right?  I'm joking!  We are all looking forward to having here here!  Cant wait!

Then there is my husband.  Who worked more overtime than regular time last week. And did it all while he was sick!  God I love him.  He was pretty much gone all the time.  And then one night, Anthony asked me if Daddy still lived at home.  Talk about heartbreaking.  I think it hit hard with David.  The positive...a whole week of vacation.  He got to take Ant to and from school. He was home when the boys got up and when they went to bed.  We ate as a family.  We were a family.  No, we are a family!

There is so much more.  Mom is off who knows where.  But she said she will be here next.  Leon is still in Iraq but will be home soon.  And the best news of the month!  Dad is done with his radiation.  Thank GOD!  That was the biggest relief.  So good to hear good news.  Still have a friend who just had surgery.  One who just got his new liver and a ton of friends still waiting for their transplants.  But all this transplant talk could get me sidetracked.  Ill save it for my next entry.  

So much more to get out, but going to stop here.  Lunches are made, dishes are cleaned, boys are sleeping soundly.  Time to cuddle up with the Mr and enjoy having him home when I fall asleep!  Sweet Dreams!

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Love, Mom

Dear Anthony and Alexander,

Today is Mothers Day. It's supposed to be a day to celebrate me, but I'd more rather celebrate you. Because being your mom is what makes me special. It's what I live for, its what keeps me strong and it is the most awesome job in the whole entire world.

Anthony, five years ago I remember waking up with a smile. You were still in my belly. I could not wait to meet you. I made you a promise that I would love you forever. That I was going to be the best mom I could be and that I would always be there for you if you needed anything. I know I haven't always kept my promise. Being your mom is most definitely a challenge, but it's one I will always keep fighting. You get your indecisiveness from me. We never know what we want. You also get your stubbornness from me too. Yeah, sorry about that. Just like in our favorite book, I will always love you. Always. I promise. I like to look back at pictures and videos of you when you were little and I am blown away at the boy you are today. You are kind and loving. And you kinda love to push it, but that fire inside of you is what makes you, you. Never give up on anything you want. I am always telling you to keep trying. You can do anything you put your mind to. The other day you asked me what I wanted you to be when you grow up and I told you it was up to you. Whatever you choose to do, you will be great! I love you more than words could ever explain. I hope someday you understand that.

Alexander, if there could only be one word to explain you, if would be hope. When I found out you were growing inside of me I was so happy I cried. I had given up hope of having another baby or a sibling for your big brother. The day we found out you were a healthy baby boy, we also found out that Momma was very sick. I remember being so afraid. I didn't want anything to happen to either one of us. I wanted to have many more years with you but nothing is promised in life. I remember feeling so alone and sad. One night I was praying to God for more time. I prayed that he kept you safe. And kept me safe. I prayed that if it was my time to go, he could give me just a little more time with you, your brother and Daddy. All that day you were so active in my belly, but when I was done praying you calmed down. And I knew everything was going to be ok. You gave me my hope back. I don't know how I can ever make that up to you. But I will never stop trying! You are such a sweet little boy. You know what you want. And you also know that a flash of your perfect smile can get you almost anything you want. Your eyes do most of the talking for you. You have such expressive eyes. I'm looking forward to watching you become your own person. While I hope you learn a few things from me in life, I have already learn so much from you. Thank you Alex for giving me hope! I will love you always!

Boys, I want you both to know that you guys are the most important things to me. Everything I do, is for you. Every breath I breath is for you. Family is the most important thing we have. Always remember that. You two won't always agree, and there are bound to be some differences, but that's ok. At the end of the day you guys are brothers. Cherish that. Always be there for eachother. Protect one another. Never let pride get between the love. Always see the good in eachother. Live life to the fullest, and each day as its the last. Believe in miracles. I did, and now I have you! I am so blessed to be you your mom. Thank you for giving me a reason to celebrate, not only today, but everyday! And remember, I'll always love you!

Love,
Mom

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A week in

OK I promise this is the last "oh I love my new house" post.  We have survived a whole week here now and everyone is accounted for and the house is still standing.  There is still a lot of stuff over at the other place, but we haven't missed anything.  I'm so close to just donating whatever is left!  The boys have 2 toy boxes full of toys they haven't even noticed aren't here.  Or ones that there is just no spot for here.  David has a ton of old clothes to get rid of and I have bins of maternity clothes that I will not be needing anymore.  Then There are the 2 extra strollers, and the tons of outdoor things they have.  Ugh.  I get tired just thinking about it all!

The bad luck did strike pretty bad this month.  We bought brand new appliances even though we were advised by everyone not to.  But the reason we did.  Everything breaks on us.  The washer has already broken twice and we just got a replacement for our damaged TV console today.  The MRI machine shut down half way though my last round of scans.  And add no computer for me and that should tell you, my luck...sucks!  Plus my blood is all out of whack again this month.  But I keep telling myself that it could be so much worse.  To bad I didn't come with  a lifetime warranty.  My overall health is still stable, so at least I got that going for me!

I still feel pretty bummed about missing out on Donate Life Month, but I know I can make up for it.  My computer died on me, so now I'm stuck with Davids laptop.  But, it works.  So I'm going to get a few things off my shoulders this week.  Mostly liver things.  Maybe a little house related ;-)  Maybe. But for now I need to take my butt to bed.  Tomorrow is Speech.  And Alex will be up early just waiting for his Mrs. Debbie to show up and play. 

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