Show them how to be a good friend!

Last week I picked up my youngest from school and he greeted me with on of his extra happy smiles. Then I noticed he was carrying a water bottle that was not his. After he gave me a hug he tells me that the water bottle belongs to his friend and that he left it in the hallway. And that he just needed to take it home, wash it then fill it up with fresh water so his friend would have clean fresh water tomorrow. How did I get so lucky? I'd soon find out.

His teacher walking by so I gave her the bottle and explained why Alex had it. The whole walk to the car I was getting stink eye by a very angry 6 year old. Trying to explain to him that maybe his friends parents would be happier to know it was in the classroom than brought home by another student and refilled was pointless. His reply "I was just trying to be a good friend. You would do the same thing!

I looked to Grandma for help but she just looked at me and said "Hes right, you would!"

He is right! I offer water to workers who come to fix our appliances and things. Heck, I've been known to toss water to trash guys. There is a special cup of water in my fridge for my neighbors daughter that is ready for her when ever she comes over.  And when my friends comment on my dinner or snack photos, I take them some.  I also try to help out when ever they need it or how ever I can.

And here was my sweet boy just wanting to do the same thing for his friends. It made my heart so happy to know that he learned this from me.

“An ounce of practice is worth more than tons of preaching.” ~ Mahatma Gandhi   

When I didn't think they were looking, they were. Being a good friend is important to me, and my boys too it seems. The truth is, they learn by watching us and we need to lead by example. Not just on how to be a good friend, but how to be a good person all around.

Be kind and honest.

Say Please and Thank You.

Help your friends out.

Share and Volunteer.

I'm always venting about kids these days.  I know that a part of the reason kids are the way they are these days, is because of their parents. Good manners and good hearts seem to have been lost. These are not things learned in a classroom.  They are things they learn by watching their parents.

This was another time that he blew me away.  After procrastinating and trying to hype himself up about it, Alex finally did it.  He climbed up the funnel of netting on the other end of the structure and was almost at the end, when a much older girl, came toward him.  She stopped.  He stopped. Then he looked down at me and gave me one of those grins and instantly I knew what he was going to do.  She was to scared to go around him and even though he was probably more afraid, he started to back track.  His feet hit the floor and he watched as she did the same.  I went over as they climbed down.  She stepped on his fingers more than once.  And almost knocked him down as she ran off with out even so much as a smile or a thank you! He didn't know this girl, but afterwards told me that she told him she was stuck and he just helped her get unstuck!

I love his heart! And I love that I am a part of it.

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Foster Dog Diaries: Somewhere over the Rainbow Bridge...

I know.  My last post was asking for prayers for Walter the foster dog.  It breaks my heart to even write it, but Walter crossed over the Rainbow Bridge that afternoon.  He gave me one last look from those big brown eyes, then he laid down, closed them and slipped away.

I was planning on bringing a different dog home that day.  But them Walter looked at me with those eyes and there was no denying them.

During his heartworm treatment, Poncho and Chico laid with him. He was in quite a bit of pain and then was on kitchen arrest.  They stayed with him day and night and never went to far. 

Poncho took his big brother status seriously.  These two became so attached to each other. When Walter lied down, Poncho always had to be touching him.  Usually he would rest his head on his back.

Just after his Heartworm treatment was done, Walter started limping and we took him in to see the Dr.  Turned out that he had an arthritis flare and the muscles in his leg had atrophied.  We spent a lot of time icing and resting.  Poncho never left his side. 

The thing though, even though he was going though all his own pain, if one of the boys fell asleep on the floor, he would get out of bed and lie next to them.  Walter and Alex were best buds.  It was quite common to find them napping together on the weekends.  Walter would walk up to him and touch his nose to Alexs asking for hugs and love.  Alex sang to him when he wasn't feeling good. He iced his swollen leg and rubbed his ears until his pain meds would kick in.  Alex was his boy. 

And when he just wanted to be left alone he knew where to go for that too.  I would catch Walter in Anthonys bed, head in his lap and Anthony just whispering to him.  And every day when Anthony did his reading homework they would sit like this.  Usually tucked away in bed, but if Walter didn't feel like getting up Anthony would go to him.  

Our tiny house seems so empty with out him sprawled out in it.  I still expect to see his sleepy face greeting me in the morning.  Even David said it hurt to come home and not be welcomed by his big ole head.  See the thing is, he was never supposed to be ours.  We were fostering him.  But somewhere in there, we fell in love and he just decided we were his.  We were hoping for so much more time with him.  We find peace in knowing that he is pain free and that he knew great love in his last months with us.  

Rest easy now and know that you were loved so very much

We will miss you Big Boy

You and those big brown eyes

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A fight worth fighting #HAWMC

Day 22 (April 22) – Day to Day

Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism. Today’s post was recommended by Abigail of http://hiddencourage.wordpress.com/

This past week I have been constantly reminded of how blessed I am.  I have had so many people step up or reach out to me and it really means so much to me.  You know that feeling when someone does something  for you and no matter how simple it is, it still leaves you smiling all day?   Its been one of those weeks.

Thursday I started my Lovenox injections again.  I am having some dental work done and so to minimize the bleeding I switch over to the shots.  Sounds like fun right.  Twice a day self injections.  I've done them so many times that I have outgrown my fear of needles.  However my thighs are filled with scar tissue now and the thought of poking my stomach just scared the daylight out of me.  So one day on the way home I asked my friend if she would do them.  With out hesitation she agreed.  And David took the weekend shift!  I managed to do a few in my belly and now am more comfortable with it.  I let the fear stop me but they were there for me when I couldn't be there for myself!  

A few days earlier, I received a phone call from a friend who went on to tell me about how she woke up and thought of me.  She said she wanted to bring me over something and later that day she gave me a paper with a list of healing scriptures.  The very same ones she said with her mother who was hospitalized and is now doing so much better.

¹⁴ Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. ¹⁵ And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. - James 5:14-15

I have also received a handful of emails from the blog from others who have been diagnosed or have had a love one diagnosed recently with Budd-Chiari Syndrome.  I remember in the beginning feeling so alone.  There was no other blog out there who talked about live with BCS.  No one to compare and talk to. No one who could inspired me and help me.  I was alone.  So when I get emails that say things like "Thank You from the bottom of my heart for writing this blog" and "I have so many questions about how you manage day to day life and what you eat and drink."  This is exactly why I do this.  I don't write for comments or pity.  I write because somewhere out there is someone who is new to the club and all alone.  Because that person can only read so many trial papers before they are scared out of their minds and believe that there is no way they are going to come out of this fight alive.  I talk about it because no one else is but everyone needs to know.

These are the little things that keep me going.  Knowing I have a family and friends to fight for.  That I have people who honestly care and want to help me though this part of my life.  Because if I can help even just a handful of people know that they are not alone and that this is a fight worth fighting, it will all be worth it.  

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Taking some time to say Thank You! #HAWMC

Day 14 (April 14) – Spread the Love

Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle. Share your love.

Today is a good day to say thank you to a few friends who have come into my life just when I needed them. These ladies have always been full of inspiration and support whenever I needed it.  Like virtual shoulders to lean on.  I had no clue that this blog would bring me a whole new kind of family.

This mom is amazing.  I can always count on her to reply to my crazy twitter rants.  She gets my sarcasm and her daughter Anna is my hero.  She was one of the first people to reach out to me when I started sharing my life on the transplant list.  Paula is the blogger behind Our Transplant Journey.  Following their road to Annas liver transplant.  And now the road after transplant   Anna got her new liver in September last year and I am beyond happy for her.

Jamee from A New Kind of Normal is one strong and amazing lady.  She has been though just about everything imaginable and always comes out fighting.  Through her blog I have found so much hope and inspiration.  If you have read any of the "Sharing our Spoons" posts, that is all Jamees doing.  I have so enjoyed doing them too.  They give me a sense of direction and goals to reach for.  Thank You Jamee for being such an inspiration to not only me but so many others out there dealing with Chronic Illness.


Rhiann over at My brain lesion and me is a great example of what a Health Activist is.  She shares her life with a long standing brain stem lesion and spastic paraparesis.  She starting blogging in hopes of finding someone else out there dealing with the same diagnosis.  Sound familiar?  To me yes.  Rihann is amazing at making me not feel alone out in the crazy world of Chronic illness.  I usually stay in touch with her on twitter but I stopped by her blog recently and saw that she has started a spoonie book club.  This has my name all over it!!

Ricki was one of my very first liver buddies.  And there are not even great enough words to tell you all how amazing this woman is.   She is a wife and mom and a TWO time transplant recipient.  She answered all my questions and was always there for support when I needed it most.  Her blog Rickis Journey is full of information and advice for those of us dealing with liver disease.  These days shes not on twitter as often as she used to be, but guess what, that makes me happy!  Because she is out there living her life to the fullest.  I still keep in touch with her mostly though FB now.  Seeing pictures of her and her family now give me the hope and faith in life after transplant.  She is such an inspiration and I am blessed to have found her!    

My sister from another mother!  When Marissa first reached out to me about being featured on her 12-12-12 project, I cant lie, I was thinking, is this lady for real?  A year later, and I can tell you with out doubt, this chick is legit.  Last year, she decided to focus a whole year to learning about others conditions instead of her own.  Last February, I was featured on her blog Abledis.  And all year long I was blown away by the time and effort she put in to learn and share each new diagnosis with us.  When I say I love this girl, I mean it.  She sends me random messages to let me know that she is thinking of me.  And she rocks my Hope for Kim bracelet like its a Rolex!  She does so much all while dealing with her own hidden disability.  Amazing!

I just want to say thank you ladies for always being here.  Your never ending support means the world to me!  You are all so wonderful and I am so blessed to have found you. You are doing so much for our health community!  I can't say it enough, THANK YOU!!  

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Happiness is ______ {Week 10}

I'm linking up with Lisa from Crazy Adventures in Parenting and sharing what Happiness is to me.  Stop by and see what is making others happy and join the fun!

More words than pictures this week.  But that is because most of the happiness is in my heart.  If I could take a photo of it all I would.  I would love to share this all with you.  Hopefully my words will be enough.  So what is happiness?

Happiness is having someone think of you out of the blue.  It is words of encouragement from old teachers.  And letters from childhood friends.  Happiness is someone reaching out and thinking of us when they needed an extra player for their soccer team.  And I am even happier that there is a scholarship program that allows us to play for free.  I don't know if they know just how much of a blessing this is for us.  Happiness is having someone tell you that for their one year cancer remission party they have asked for donations to my transplant fun instead of presents.  I know such giving and thoughtful people.

Happiness if being married to a man who can find you in the darkest of hours and bring you back with a smile.  Over the last month the guilt over not being able to work and do things that other moms can do has been wearing on my heart.  Bills are piling up and David has been busting his butt at work.  But it seems there is never enough money.  Last week our roof was damaged from a wind storm that blew though.  Monday night the roof we were quoted $400 to fix it.  That was my breaking point and by the end of the night I was doing the ugly cry.  David sat next to me on the couch and promised that everything would be OK   Happiness is having someone who loves you regardless of all your drama.  Though tears and anger.  Who can see when something is wrong no matter how hard you try to hide it.  Happiness is knowing he loves me for me.  The good, the bad and the ugly.

Happiness is seeing my baby play soccer for the first time.  Hes so tiny out there but is working really hard.  I have been having so much fun practicing with him.  He is up every morning and ready to go.

Happiness is the both of us getting back good lab results.  A few weeks ago when David was sick his labs revealed high liver enzymes but the recheck was just find!  Thank God!  My INR was at 3.1 and I don't have to go back to two weeks.  YAY!

And this little man was beyond happy to get his soccer uniform. Even better was having our favorite # on the back! Go #28!

 

Despite all the stress and tears this week brought on, I'm sitting here smiling.  Through it all, I know that I am blessed.  Surrounded by love.  And happy!

Wishing you all a little happiness this week!  Much love!

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It's not just Valentines Day...

Today is February 14th.  Valentines Day.  The love going around today is amazing.  Flowers, Chocolates, and Candy are being given to wives and girlfriends.  Ladies, Did you do something special for the man in your life?  Kids handed out valentines at school.  Moms made heart shaped pancakes for breakfast and sandwiches for lunch.  Little love notes and surprises for all.  What is not to love about today.

But did you know that today is also National Organ Donor Day.  Oh, you didn't?  Well guess what, now you do!  Your Welcome!  

Tonight there are more than 117,167 people listed for a new organ.  And 15,770 of them are waiting for a liver.  I am one of them.  There are mothers and fathers, sons and daughters all just waiting.  Praying that someone had it in their heart to register as an organ donor.  That someone will have enough love in their heart to give them the gift of life. 

When I was first diagnosed, the first thing most of my family said was that they wanted to be tested as a match to be my donor.  I have had people I met through twitter or FB ask me if I would accept them as a donor if they were a match. And I even had one man leave me a blog comment, offering me a portion of his liver.  These people have so much love in their hearts that they are willing to save my life.  Well except for that man who continued on about a considerable fee. That was just awkward.  

So now that you are coming down off your sugar high, your flowers are placed in a pretty vase and hopefully your children are not to wound up to go to bed.  Take a minuet to thank an organ donor.  Or to say a prayer for all of us still waiting. 

And please, if you haven't already registered as an organ donor with your state, do!  If you are, Thank You!  You could be someones greatest hero.  You can save a life. Actually you can save more than one.  If you have any questions about how to sign up, let me know and I will do all that I can to help you out.

Happy Valentines Day.  Happy Organ Donor Day. 

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Hope for 2013

Did all that you wished would come true last year really come true?  Did you keep the resolutions you made and accomplish the goals you set out for the year?  Looking back at my Hope for 2012 Id like to think that a lot of my hopes happened.  Most of my hopes were for my family.  And while many of my hopes for my brothers and sisters came true, this was a hard year for us.  One of my hopes was that we would all get together.  In July, we all came together to say goodbye to our Father.  His one wish was always for us to be under the same roof at one time.  Just like the old days.  I wish he could have been there to see us all.

Last year I wrote:

"I am hoping for good health for me.  If this is not the year I get my liver, God please let Anna have hers.  Give her the chance to enjoy the rest of her teen years.  She is only a child.  If I could, I would let every child go before me.  But in my heart, even if its selfish, I pray for my call too.  How could I not with 2 little boys of my own.  If anyone gets their gift in the new year, I hope it is Anna!  You can read more about Anna's story HERE!"

Guess what!  ANNA GOT HER LIVER!!!  God is great!

My health was great this year.  No major trips to the hospital, no surprises.  My appointments have spread out.  Ive been able to accept my limitations and still do things I wanted to do.  I was able to step back from a few things and step up for others, without feeling guilty. 

There are a few things I need to work on this year.  And I am beyond excited to dive in.  Here are some things I hope to do this year.

Spend more time outside with the boys.  All this cold has me itching for some sunshine.

Go on more walks.  Preferably by myself or with the dogs.

Explore more parks.  The boys insist we find swings...

More family adventures.  Camping, fishing, hiking.  I want to do it all

Date nights.  Adults only.  No Exceptions!

Mom Dates.  No Dads.  No Brothers.  No Exceptions!  Unless Dad is driving us :)

Write more.  Even if its about day to day stuff.   I am not confined to one subject.

Pick up my camera again.  I miss the feel of it in my hands.  I love my phone, but...

What are some things you hope to do this year?  Big or small I think setting goals is such a fun thing to do.  When you can cross something off the list at the end of the year it feels so great.  And when you look at the things you can't cross of remember...

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I grew up in a bubble.

I had just laid down with Alex for a nap and decided to scroll through Twitter really quick.  I take it back.  I just want to curl up in a ball with my boys and tell them just how blessed I am to be able to hug and kiss them.  The tears wont stop falling and my heart is broken.

You see, this violence and hate is still so new to me.  I don't understand it.  I grew up isolated, on a tiny island in the Pacific Ocean.  And my elementary days were the best!  Before school we would gather at a friends house.  I remember we would leave early some days and take the "scenic" route.  Going though the trailers, cutting though White Park, back to the Ivy Gym before actually getting to school.  At recess we ran wild.  Always staying on school grounds.  OK that's a lie.  I did hear of kids...OK I have ran across the street to a friends house during recess.  Such a troublemaker!  But that's what we did, some of us anyways.  We were carefree.  No fear.  We would ride to and from school.  Most of the time with out supervision.  Although there were always eyes on you.  The mom our for her morning walk, the other parents going to work and the teaches that passed you reminding you not to be late.

I know we talked about things like this.  I remember D.A.R.E and McGruff assemblies and the fire drills.  But it was paradise.  Nothing bad ever happened.  Clay on the teachers chair,  a few teachers bikes went missing.  You know what I was scared of in elementary school.  The Principal.  Never in my life did I once think about anyone coming in to the school to hurt any of us.  We were not so sheltered that we didn't know that these things happened, but we knew they never happened to us.  I grew up in a bubble.

During summer vacations, we would leave the island and that feeling of being invincible stuck to me.  We would wander around the hotels.  The mall.  The beach.  I wont lie.  I talked to strangers.  Said hello to every homeless person I saw. I was just trying to be nice.  The thought that someone might want to hurt me never crossed my mind.  Dad reminded me quite a few times.  Especially as I got older.

Now that I have kids and I see the craziness of the "real world," I tend to lean on the more cautious side.  But guess what.  My kids, they love people.  Anthony, after he grew out of his shy stage, would talk to anyone.  He always wanted to go to neighbors houses and go inside.  Or invite the people we passed on our walk to the mail box over to play.  He is a spitting image of me as a child and it scares the CRAP out of me. The hours and hours we spend talking about why you shouldn't talk to strangers, or go with them.  The talks about being cautious and aware of your surroundings.  I pray everyday that he retains it all.  But one day he says "Why would anyone want to hurt me?"  The same exact words I mouthed off to my Dad once.  Karma.  So all I can do is remind him over and over.  And hope to God he is listening.

How do I explain to him so he can understand.  When I tell him there are people out there who are sick and want to hurt people, and he looks at me with those big brown eyes and says "that's so sad,"  its heartbreaking.  And then he wants to know why they are sick and how someone could hurt another person or animal.  And then he asks about the pain it causes and it all usually ends up in him giving me some of the best hugs ever.  But I know they are out of sadness.  Hes a lover.  Hes 7.  I wonder if the school talk to the kids about things like this.  Do they have a plan for this kind of situation?  I will talk to him about it.  Maybe not today but, but soon.  Once I figure out the how to explain such tragedy to him.  I hate to think that this is the kind of world our kids are growing up in.  Makes me want to pack it all up and find a way home.  Back to no guns.  No cars.  I'd deal with sharks and sunburns any day.

My hearts go out to the parents of the children who won't be coming home tonight.  Who will miss them even more when their presents sit unopened Christmas Day.  What is this world coming to?

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Results may vary...

Monday was my follow up with the Liver Clini.  And was a pretty easy one, even though I was a nervous wreck.  I think having to go alone was what was the hard part.  But I made it though with almost all good news too.  My liver is working well and getting things done.  All my lab work came back with good results.  My bilirubin and creatinine were only slightly elevated.  And there was no fluid in my abdomen.  YAY!  The Dr left to schedule my appointments then came in with the bad news.  

I love the way he casually says "Oh, I forgot one thing to tell you"  Um...I would have rather had the bad first, but ok.  So.  There is a polyp on my gall bladder that is new.  It is 6mm.  He said that if it grows larger than 1cm, they will have to remove the gallbladder because there is a greater change that of it becoming cancer.  However, I don't have to have another scan for a year.  And I he also said unless I had any problems, I can stick to 6 month appointments for now.  I think each doctor has their own preference on this.  My originally doctor said that I should be kept on 3 months visits.  Its a good thing I know my body pretty well and I think that if something were up, I would notice it.  Off goes the safety blanket of regular appointments.  

Don't get me wrong, I LOVE not having to go back so often.  And my checkbook may love it more.  But I get such a sense of security knowing it wont be long before I go back.  Things change so fast and Im always worried that if I don't go back so often, something will be missed.  And after being so closely watched over the last 4 years, to be given just a little bit of wiggle room is scary yet refreshing.  

And I got homework.  20 mins of walking 3-4 times a week.  And he wants me to build up to 60 mins a day.  I told him that I try, but one day of pushing myself usually leads to two days of pure exhaustion.  He promised if I just push though the first two weeks it will get easier.  My weight has been a problem for a while and I have stayed as active as I could.  Good days and bad.  But this is the first time a Dr has mentioned it.  Crazy right?  So now there is no avoiding it. Doctors orders are the law around here.  

Tuesday I had a dental appointment and was nervous about the oral cancer screening.  My father just passed away in July.  His cancer started in his tongue and jaw.  So its pretty obvious why I was nervous.  But I got the all clear.  Nothing!  Praise the Lord! 

Next up is the hematologist who I have no wiggle room on.  Labs every month.  Visits every 3 months.  Somethings never change and that is ok by my.  And sometimes they have to.  That is ok too.  heres to a new chapter in this crazy book I call life!

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Finding {HOPE}

The theme this year over at Invisible Illness Awareness Week is:  Invisible Illness?  Share your visible hope.  And seeing as finding hope is what started this blog, I wanted to share a few moments in my journey where I found hope.

This first Halloween was the hardest. Just days after I was diagnosed.  I was feeling so horrible but this little soldier was so excited to go trick or treating.  At the end of the night, after days of carving pumpkis, painting them and a night of trick or treating, he said "I love this Halloween and I love you"

"Some day I'm gonna fly a plane.  Will you watch me mom?"

He has been planning his future since he was 3.  And I am always a part of it.  He gives me hope!

"Let me take your picture so I don't forget you while you are gone"

The moment it really hit me that Anthony really understood. I hoped he would never forget me!

Another year had passed and I found hope in making it that far.  In just a short year, I went from not knowing if my baby or I would make it.  To watching my first born grown in to his own little person and feeling so in love with my family.  There was hope to be found it everything...

In first steps

In nursing

In green ribbons

In green bracelets

 

In my family

Hope is everywhere!  In the beauty of an amazing sunrise. The sweet smell before a good rainstorm.  You will find it in the smiles and hugs from your family and friends.  And some days you will feel like its not there, but I promise, it is.   What gives you hope?

Once you choose hope, anything's possible.  ~Christopher Reeve

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There are bound to be bad days!

What better way to start out the first full week of summer by laying in bed all morning.  Of course it would be better if I wasn't curled up in the fetal position crying in pain, but hey, I'm trying to be positive here!  This is it.  This is my life.

Over the past  month I have been counting my blessings.  Everyday I got up and felt OK, I said a prayer and gave thanks because I knew days like today laid ahead.  I forgave mistakes.  I over looked the little things that usually drive me nuts and I tried not to raise my voice.  I said tried.  Because even though I tried, stress has been killing me and my nerves are shot.  And if you know us, things get pretty hectic around here.  I'm not perfect.  I will be the first to admit it too.

This morning was the first time in a while that I let it all get to me.  After only minuets of sleep in between tossing and turning and trips to the bathroom, my alarm went off.  Woke up mom and sent her to pick up Melisa from work.  Fed the dogs and boiled eggs for lunch.  While the eggs boiled I laid on the couch.  The cold leather felt like heaven.  But before I could even close my eyes, the alarm was going off again.  Eggs were done and it was time for my morning meds.

I didn't take my meds.  After pulling an all nighter and puking though most of it, I didn't really want to spend anymore time in the bathroom.  So I quickly made the egg salad, packed Davids lunch, let mom know when to take the dog out and crawled back in bed.  I'm not really sure what upset me more.  The pain or watching David get ready to leave for work.  I wanted the pain to go and him to stay.  Before I knew it I was crying.  I hate when I cry in front of him. I know he had to go, but I wanted so badly to beg him to stay.  And at that point he probably would have but I know he had to go.  So he kissed me goodbye and headed off.  That was the last thing I remembered.

I must have finally fallen asleep and was woken up by a tongue to the face.  Again.  I've accepted it as part of being a Great Dane Mom.  Just another part of life.  Fell asleep to a kiss and woke up to one too.  I've said it before, I'm a lucky girl.

I managed to roll out of bed around 11.  Get the roast in the crock pot and the coleslaw mixed up.  Fed the boys.  Took something for the pain and plopped down on the couch to watch some TV.  Now its 4:30, I need to finish putting dinner together.  There is no way I'm going to the store today. But I did manage to finish my list so hopefully I will be up for in the morning.

Before David left he asked me if I needed to go to the hospital.  I didn't think it was necessary, after all, this really is just part of being sick.  My pain meds lasted about an hour and I can feel it creeping back up.  The only thing is he just told me that he will have to pull a double.  So even if I wanted to go, I couldn't.  I could, but I'd be there alone and that's not happening!  The good news is overtime..

Off to feed the pack now.  Then this momma is going to bed.  I am so thankful to have my mom and sister here to help me.  And even more thankful for kids who are caring and forgiving enough to love me even though I didn't get to play today. For a husband who busts his butt to provide for us. And for all of you who help carry me though days like this!  The week can only get better from here!

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Trying but Tired

I'm trying to be understanding, trusting and patient.  I'm trying to understand that liver disease is one that happens on its own terms. I might get worse today or in a year.  I'm trusting my doctors with my life.  Believing that their decision to just watch things is the right thing to do.  I'm trying to be patient as I travel the road to transplant.  I promise. I am trying.

Today marks my second year on the liver transplant list.   But instead of being all these things, today I'm angry.  I'm angry that how I feel on the inside is not how I look on the outside.  I'm angry that I have to ask for help.  I'm angry that isn't anything the doctors can do.  My family is going to have to slowly watch me get sicker. Waste away right before their eyes.  I'm angry for all the grief I will cause them.

David asked me last night why I wouldn't just be happy to be healthy now.  I don't want to sound ungrateful.  I know that the time I have now is a gift and I always try my best to live these days to the fullest. But I grew up worrying about my parents.  I tried my best to take care of things when there was no one else to do it.  I gave up a lot of my childhood.  I grew up to fast.  And I don't want that life for my boys.  I want them to be able to enjoy all the things life has to offer them.  I don't want them home on a Friday night because I'm sick.  I don't want them staying up late trying to cram in school work because they spent the afternoon taking care of me or visiting me in the hospital.  Either way they are going to have to deal with these things, but I feel like the sooner it happens the easier it will be on them.  They are young, forgiving and so much more understanding now.  And honestly its getting harder and harder to reassure them that everything is OK.

The other day I was talking to Anthony and explaining things we should pray for and things that we are better off just waiting patiently for.  He had originally prayed for more bey blades and a kite.  He asked me what I pray for.  I told him mostly I pray that my guys stay healthy and happy.  I pray that my grandpa Jim beats the cancer that is making him sick.  And that our family only strengthens and that we have a long long time together on this earth.  He then said that he was going to pray that my liver wasn't sick so I could be happy again and wouldn't be so tired when I cook dinner.

Most days I am able to make sense of the waiting.  Today is just different.  I'm tired. Lord am I tired. So Ill give myself the day to be angry.  I will be better in the morning.  Tomorrow I will be more understanding of this journey and will embrace the health I have now.  I will be more trusting in the life he has planned for me and that somewhere out there is the perfect liver for me.  And I will be more patient with myself, my family and my transplant team.  I am not in this alone.   There are 114,652 other people also waiting for a transplant with me.  

**Not a donor? Please visit Donate Life to sign up. You have the power to give life!**

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My prayer

Dear Lord,

You know him so much better than I do. You know his sickness and the burden he carries. You also know his heart. Lord, I ask you to be with him now, and work in his life. Lord, let your will be done in his life. If there is a sin that needs to be confessed and forgiven, please help him to see his need and confess.

Lord, I pray for him because your Word says I should pray for his healing. I believe you hear this earnest prayer from my heart and that it is powerful because of your promise. I have faith in you to heal him, but I also trust in the plan you have for his life.

Lord, I don't always understand your ways. I don't know why he has to suffer, but I trust you. I ask that you look with mercy and grace toward him. Nourish his spirit and soul in this time of suffering and comfort him with your presence.

Let him know you are there with him through this difficulty. And may you be glorified in his life and also in mine.

Amen.

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Im back

I haven’t written in a while. Things have been more than the usual crazy. So many things going on. So many prayers sent. None answered. But I keep telling myself to have faith. That’s all I can do now. I don’t know all the details, but I know my family needs prayers.

As hard as this week will be, I’m ready for it. I used up all my excuses and pity last week. This week I’m putting my happy face back on. You know, the one that hides the pain and sadness so well. Should be interesting to see what the therapist has to say this week. Speaking of doctors, this week I see my hematologist too. Next week I have my Liver Clinic appt. And I really home my regular Dr. is there.

I also fell off the exercise train. Fell off and run over by is more like it. But it’s a new week and I’m jumping back on. I did stick to my cooking at home goal. Yay me. It felt good to know what I was making each day. I watched my serving sized and didn’t have any second servings. I did get a little chocolate happy which is quite odd because Im not a big chocolate person. We did grocery shopping today and I am set for the week. Lots of veggies and only a few processed things. I’m juts not ready to make my own hamburger buns yet.
I don’t know what I am making each day, because Ill be cooking around my Drs appointments. But here's what we are having.


Chicken strips and fries. By making these from scratch I will be cutting out about 300mg of sodium. The calorie count does go down but only by a little.

Sloppy Joes. This is another thing I started making at home. The boys love this stuff but there is no more Manwich here. Again the calories don’t go down a whole bunch, but the sodium about 300mg again! The recipe I have calls for ketchup and tomato paste, so I will use the no sodium kinds.

Chicken Roll ups are a fajita of sorts. Boneless Skinless thighs with bell peppers, seasoned and wrapped in a tortilla. Good stuff. I skip the tortilla because if I don’t then I want cheese on it and that plus the tortilla is a little to much sodium and calories for me.

Pork Tenderloin. Yes I know it was on my menu last week, but we ended up with leftovers one night, so I have carried this over to this week. Not sure if I will stick with the same recipe or not, but yeah.


I love short weeks. Especially when both my boys are sick. Stupid weather. Anthony got soaked when they were leaving Monster Jam last weekend and my this morning, both boys are coughing and congested. Should make for a fun week. I guess I better get to cooking. I started this post last night, fell asleep, wrote a little more this morning, went to get Ant from school, and now I’m tired of writing. 

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