October 18, 2012

World...meet shoulders.

Last night after David got home from work we had to run an errand for my mom.  But first he took me for a ride.  One thing I love/hate about this man is that he can always tell when life is getting to tough for me.  And he makes me talk about it.  I love that he can tell when I need to let something out.  I hate it because somethings I just don't want to talk about it, even though I always feel better after telling him.  So last night we took the long route and he asked me what was running though my head.  This morning I came across this pin on Pinterest!


                                                                                                       Source: imgfave.com via Kim on Pinterest


I tried my best to explain it to him.  I've been thinking about the last conversation I had with my dad lately.  Trying to find the hidden message somewhere in it.  What was he trying to say when he told me I would know what to do.  That I always knew what to do.  Because I am missing something.  Something big.  It feels like all the worries he had and shared with me during that last phone call have been put upon my shoulders and I am stumbling under the weight.  I am trying to do right by him and I am trying to keep the things he was worried about from happening.  But I cant help someone who doesn't want to be helped.  I can't keep giving advice to someone who won't listen.  I can't apologize for the lies that people tell about me.  And I can't fix other peoples mistakes.  He only told me things he said he knew I could handle.  And I know he confided in me not to make my load any heavier, but because that's what we did for each other.  I loved that I could always count on him to be my voice of reason and that I could be the same for him.  So why am I struggling with this now.

Some days my head tells me to just dump it all.  My heart tells me something different.  Instead I take this load and I carry it with me.  I know more than I should.  I've seen more than I needed to.  And I have heard more than I wanted to.  I would gladly take their worries and pains too.  I don't know any other way.  Neither did he.  I am my fathers daughter.

One thing I do know is that it will get better.  I need to get my head on straight.  Focus on the possible not the impossible.  This weekend is going to be extra fun.  Davids work is having a company picnic   On a ranch out in the hill country.  Fishing, boat rides, long horns and lots of fun. I'm taking my camera.  Im just excited to get out.  But a little nervous being around so many people that I don't know all to well.  Wishing you all have wonderful weekend.  Much love.

October 15, 2012

2 in heaven. 2 on earth.

October 15th is Pregnancy and Infant Loss Remembrance Day.  It is also a day that reminds me of a pain that is usually kept deep in my heart.  The sadness that I keep locked away comes out and there is nothing that can stop the tears.  Its a hard day.  Not just for me but for so many others.  Tonight at 7 I will light a candle for the babies I will never hold.  And for all the other parents who are missing their angels too!  Its not a happy story, but here is mine.

 I remember looking into Davids eyes and telling him something was wrong.  Everything was wrong.  I was just a senior is high school   A month away from graduation.  And our little secret was about to be told.  For months we had been trying to plan the rest of our lives.  I was already planning on moving to my moms in FL.  He was going to join the military.  Every night before he would leave, he would rub my growing belly and tell our baby that he loved him no matter what.  We knew we were young.  We knew we wanted to spend the rest of our lives together.  But we had to keep the secret at least till we left home.  A week before prom, it started.  The cramping.  Then the bleeding.  I put on a smile and we made it to my Senior Prom.  We stayed just long enough to have one dance.  The song?  I wanna love you forever.  We went home that night and I told my dad that I needed to go to the hospital.  After a D&C, a blood transfusion and a 2 night stay, David picked me up and took me home.  That night we walked the island feeling like we had just lost everything.  Crying.  So empty.  For 4 months we 

A few years later, we were living in FL.  Working and doing our own thing.  I remember when I first realized I was pregnant.  David insisted I see a Dr as soon as I could.  Even though we wanted nothing more, suddenly I was scared out of my mind.  I remember calling my sister and just about breaking into tears trying to tell her that I was pregnant.  I wish I could have taken a picture of Davids face when we first hear that heartbeat.  Strong and fast.  A month later, on September 11th, we went back in for a followup.  My joy over getting to hear her heart beat one more time was shattered when there was nothing but silence.  My Dr. said he was sorry and I turned to David and told him I was sorry too.  I felt like it was my fault.  My only job was to keep our baby safe and healthy and I failed.  The nurse, not knowing of our loss, handed us a diaper bag on our way out.  Two days later, while I was vacuuming of all things, it hit me.  I fell to my knees and sobbed uncontrollable.  Then his arms were around me, his tears were on my shoulder.  I blamed myself.  I lost faith.  The bleeding started the next week and after a week of more bleeding and even more pain, David took me to the hospital.  Another D&C and transfusion we were sent home.  No baby.  No hope.

A wife who loses a husband is called a widow.  A husband who loses his wife is a widower.  A child who loses his parents is called an orphan.  But there is no word for a parent who loses a child, that's how awful the loss is -Neugeboren, 1976

We began to think that we would never have the family we dreamed of.  To this day, we still imagine our lives if our first two babies had lived.  We would have a teen.  We never gave him a name.  We don't even know for sure, but I always say he.  Just as David would when he talked to him.  We would have 10 year old too.  My heart tells me it was a girl.  I can see her face in my dreams.  Long black crazy curls, big brown eyes and her daddys lips.  I wish I could draw her face so I could remember it always.  My heart aches to hold them.  And to comfort them.  Maybe its me that wants the comfort.  

We didn't have an answer to why I had such a hard time staying pregnant until I was diagnosed with my blood disorder.  There isn't anyways to tell for sure, but most likely that is the cause.  It doesn't make it any easier.  My heart still hurts when I remember how quickly the joy I felt when I found out I was pregnant was turned into sorrow.  I still wipe away tears when I place my two angels atop my Christmas tree.  This is a pain that will never go away.  




October 14, 2012

Donate Life Walk 2012

The weekend seem to be getting shorter and shorter.  But we still rocked it! Saturday was the Donate Life/Vital Alliance 5K.  The first year it was just David, Alex and I.  Last year my sweet friend Stacy joined Melisa and I and this year we started team Hope.  Melisa brought some of her friends.  Anthony walked with me this time and Stacy and her kids came too!  And it was really nice to have my brother and a friend from home there with me too.  Thanks Michelle for driving down from Austin to join us!  We have big ideas for next year and I cant wait.

Before we started we were standing around taking in the huge turnout.  People come out with their dogs, huge teams with matching shirts and some with banners and signs.  David said it seemed like everyone was walking for someone who had passed away and pointed out that we seemed like the odd man out.  Its true, there were huge posters up where you were asked to write the reason you were there and most were in memory of a people who donated.  But I heard a few others talking about how transplant saved them or their loved ones.  Its amazing to see so many people come together to support something so important.  David also pointed out that its not nearly as well known as it should be.  When you say awareness bands and runs, most people think of Livestrong and Susan G Komen.  But what about us?  What about the 116,056 people (as of today 1:32pm) waiting for a miracle?  The truth is, so many people just don't know about organ donation and what little they do know is incorrect.  And that is why we show up and walk and share our stories to anyone who will listen.  We educate those who don't know.  We share hope with those that are waiting and we give thanks to those who have or are willing to be donors!

Thank you to those that donated and an extra big hug and thanks to Team Hope.  Knowing that I have people who are willing to walk with me though this journey make it that much easier.  It makes me that much stronger and fills me with hope.  It also reminds me to share more with you all about my condition, about being a donor and about raising awareness.

Whats your story?  Are you an organ donor?  Do you know anyone who was or who has had a transplant?  If you are not, what is stopping you?

October 9, 2012

Hello Friends! Welcome to my bubble...

I love my kids but sometimes it is so good to talk to someone about something more than ninjas and video games.  You know it is bad when you are relating real mans hair cut to that of a cartoon character. Yup, I did that.  Yes, I need to get out more.  No, I can't always do that.

If I had to pick one word to explain how life on the liver transplant is for me, today I would pick {Lonely}.  Again, I love my boys and my family.  But I forgot how good it feels to have adult friends.  And talk about big kid stuff.

I found out I was sick not long after we moved to Texas.  So not only did I have the disadvantage of not knowing anyone, now they were telling me I wasn't allowed to go anywhere!  I remember when Anthony started school and I would walk him to class every day.  It was so refreshing just to get out and see that there were in fact other people out there.  I met a few of the moms and we would catch up when we picked our kids up at the end of the day.  And hang out at a few of the birthday parties.  But they all lived in other neighborhoods and since I was stuck here, it was few and far in between that we would get to talk.  And when my illness got in the way of our plans eventually people stopped calling.  It happens and I can understand why.  That is why socializing is mostly limited to  my computer and text messages.  Call me and chances are you wont hear me over these boys!  Fair warning.

This year, I made a point to be more social.  I've made friends with a few of the moms here now.  Some are more social than others.  Its hard putting myself out there, knowing that I will have to turn down invitations and stuff because I am to sick or cant go.  I hate being a one sided friend.  But there isn't much I can do.  Ladies nights out, sorry, not only don't I drink, but I cant even offer to be the designated driver.  Play dates at the park?  I will have to bring my MIL or Mom with me because I cant drive.  Or I am not well enough to go.  Morning walks?  Maybe, but I will have to skip my meds that day because they make me so sick I have to stay close to a bathroom home.  So you get my point, I'm a bad choice for a BFF recruit.  Unless you are cool with just sticking close to home, having good conversation and laughs.  I'm like a cheap date!

But having a few ladies close to home who understand and don't judge.  Who get my sarcasm and my parenting views.  Who aren't always on the go and understand why I can't just jump up and go...its so nice!  Its hard hearing about all the fun things other moms are doing.  I enjoy hearing the stories about all the places they go and  the things they do though.  I know that someday I will have the chance, but for now, life is pretty low key.  And that's OK too!

I went from living on a super social island where I knew everyone, to working at Disney world where I met people from everywhere.  Going out, having parties, going to the movies and just hanging out.  And then all of a sudden I was cut off and stuck at home.  Some days its almost like being stranded in a bubble and I'm watching the world go on around me.  Without me.  My door however is always open and y'all are more than welcome to stop in and say hi! Take your shoes off and stay a while! 

October 8, 2012

Here we go again.

It's never going to get easier will it?  If its this nerve racking now, before my transplant, I can only imagine after.  The actual process is easier.  I know what to expect.  I know the team who will be talking me through it. And I know that feeling of "warmth" that comes when they run the contrast through my veins.  But still here I am the night before.  Hungry, thirsty and nervous. 

I'm not sure what number this is.  I know I've hit double digits now.  My guess would be that this will be my 14th or 15th MRI in the past 4 years.  A bit much if you ask me, but since Alex was born I've stuck to a pretty strict schedule of every 3 months.  Although I went 6 months this time.  Maybe that's why I'm such a mess tonight.  My routine got all messed up.  Yeah!   That's it. 

Shower, check.  Jewelry off, check.  Clothes laid out, check.  Water on my nightstand...nope.  God I'm so thirsty.  I know!  I'll just brush my teeth again.  My mouth is that dry!  No, I'll just close my eyes and get some rest. Can't be falling asleep in the tube...again! 

October 1, 2012

Must be Monday

Oh Monday, more and more I despise you.  Gone is the excitement of a new week.  This morning was rough.  Sleep was just not happening for me.  And what little sleep I did get, I somehow managed to kink my neck. Ouch!

Melisa got home at midnight.  I got up to let her in.  Anthony busted the door down at 2 to let me know he drank all his water and was taking mine.  At 3am, he came back to use my bathroom after walking right past his to come to my room.  4 am I was up after a run in with Alexanders foot left me with a bloody nose. Shortly after 5 Anthony crawled in bed and I was to tired to send him back to his own.  My alarm went off at 5:45.

The school bus usually comes around the corner by 7.  By 7:20 I had to run home and throw up.  Although I told the other mom I had to make Davids lunch.  Which was partially true.  I did need to make it, but figured I would when I got back from checking the bus stop again.  When I left the house again, she was walking back with her daughter, Anthony and 4 other girls.  Their parents had all left for work already and they had no way of getting to school.  So we walked.  Two moms and  6 kids. 2.5 miles there and back again.  Thankfully the kids were pretty excited about it.  Hopefully their parents are ok with it.   We figured it was better than sending them home alone or driving them.

I never did make Davids lunch...