Learning to walk

*seriously,, these ramble sessions are more for my benefit than yours,,,, I can't keep a thought straight in my head so the following post is going in a million different directions,, good luck*


I feel like a toddler,,, younger than a toddler actually,, I feel like an 12 month old learning to walk.  Everything takes so much effort right now, even breathing... every once in a while I have to think to myself,, BREATHE IN!, Exhale! Breathe in,, EXHALE!.  Things that used to come so naturally,,, take the greatest effort.  My smile feels plastic, forced,, fake.

I didn't even feel this helpless when I was a single parent with two kids... I just did it then,,, I don't know how to be a WIDOW.

I am at my parents house for a few weeks, trying to figure out how I am supposed to survive this new reality, although I have to say, as long as I stay in their house, I do pretty damm awesome at avoiding facing it.  It's when I step outside, into the literal coldness that reality hits.  I look outside the window and watch the snow fall silently from the sky and all I can think is,,, I have a young boy who would love nothing more than to stomp right through that virgin snow in Papa's backyard and make snowangels all day long, have a snowball fight with whomever was brave enough, usually it was his Dad,  to face the frozen air to make memories with this boy.

But I don't have him,or him, they are  home, where they are supposed to be, with our Father in Heaven, doing what He needed those two to do.  AND I MISS THEM!  I miss their smile, I miss his mischievousness, his smart mouth, his laughter, the twinkle in his eye,, OH HOW I MISS THEM BOTH!  My arms ache to hold him,, my ears ache to hear him and his Dad laugh hysterically as they plot out how to "get mum".

We went into Lethbridge today, and I remember whispering to my Mum, "will I ever be able to go into a store and not leave in tears because I see something that reminds me of my boys?"  her response, "not for awhile I'm afraid".  I tried on the sweetest pair of heels today, and thought, 'OMG He will Love THESE!, and I put them back on the shelf, and walked out empty handed...before anyone saw the tears well up in my eyes.  I walked into a store today and saw the BIGGEST collection of DR. WHO memorabilia I have ever seen, I could've stood there all day just staring at it,, seriously!!!  I can't even look at the kids department anymore,, why bother.... I saw a sweater at costco and immediately thought, Todd would love this!,, that's when I turned to my mum and asked if I would ever be able to shop again......

Todd's parents are taking us, the kids, on a cruise at the end of the month, and I am so scared to go.  Don't get me wrong,, I absolutely adore my inlaws,, all of them,, I seriously have the best inlaws in the entire world,  This was something Todd and I were so excited to do together, with his family.  How do I get on that plane, that ship without him?  *my thoughts are so jumbled right now*,, How do I enjoy and have fun without the one person in the entire world that fully completed who I am?
How do I do this when getting out of the house completely drains me?  *no I am not offering up my ticket!!!!* I am still looking forward to it, I just don't know how to do it.

I don't know how to do any of this.

 So, when you ask me what you can do to help, here is my response, come sit with me, hug me, laugh with me, walk with me down my  path of memories, let me cry,, let me laugh, let me sit in silence as I enjoy knowing I am not alone, just let me....

 Please don't tell me it will get easier, or it will be ok,, it will never be ok.... It will be tolerable, and I will learn to live and navigate through this, but it will never be ok,, don't tell me to remember my faith, my faith is strong, I believe in life after death and I know I will see and be reunited with my sweet husband and son and other loved ones again.  NOTHING will ever shake that!! I know what I believe is true.  This hole in my heart is also true.. and NOTHING will ever fill it.

 You don't have to say anything at all,,, really,, because I know you are sorry, I know you worry about me, please just be my friend, don't leave me alone, but don't push.  Let me know you are there, or here, bring kleenex.  Come sit with me, go for a walk with me, don't be upset if I don't want to talk, look at pictures with me,

Don't be shocked when I make jokes about the widow Johnson, or how the position of marital partner is now open,, if you know me at all you know this is how I deal with stress,, humor.
Don't look at me with pity, look at me with love,, don't tell me you know what I am going through, but empathize with me,

I will continue to wake up every morning, breathe in, and breathe out, put my feet on the floor and move forward, through this pain that has my heart in its grips, through the agony, through the fear, the sorrow, and the tears\, just please walk beside me, hold my hand and let me know you are there.

Dill Chips and Eggnog

Everywhere I look I see memories, I can't escape them.  They are all encompassing. I see the snow covered mountains and tears fill my eyes as I remember how excited we all were to have a white Christmas, to feel the cold wind chaff your cheeks and you sped down a hillside on your crazy carpet sled you couldn't wait to get, the excitement on your face when your dad said he would pull you around the neighborhood with his jazzy,,, the glee in his eye at the ease in which you were happy.  

I walk into our bedroom, and what once felt crowded now feels enormously empty, the spot where you once laid your head, is now mine, and the smell is fading,, smells fade way to fast. Your cologne that was for special occasions, sits where you left it,, I spray my clothes when the days are hard, your soap in the shower,, I hold it to my nose, as the hot water washes my tears.  I'm so scared it will dissolve I keep it on the highest shelf in our shower so water doesn't melt it.

I dread the nightfall, that's when the events of that night play over and over in my mind.  The darkness that veiled the road, the lack of stars, the eerie silence,,, the spirit quietly whispering in my ear as I drove home from work,,, how I couldn't seem to get home fast enough,, before I even "knew". I drove around the accident, thinking how sad it was that something had to happen this time of year, little did I know,,,,, and yet I knew.  

I was walking through a store today with my mum and saw dill pickles on a shelf and tears filled my eyes as I let the memory of you asking for dill chips, and me thinking you wanted potato chips, flood my mind.  The all to familiar numbness came over me as I continued through the store,,,, eggnog, I see eggnog for 30% off and I grab a carton thinking What a great surprise it will be for Levi,,, I carry it about 20 feet before reality hits me, I slowly turn and put it back on the shelf, wondering if I will ever enjoy eggnog again, or dill pickle chips without crying, or feeling nauseous.  

Sleep is unrestful, when it does decide to invade my space.  I dream of you both, the memories are nonstop when I sleep,, if you can call it that.  I wake up anxious to push these to the back of my mind. I crochet until my wrist hurts because when. I crochet I count,,, my mind is busy, concentrating as best it can.

My eyes hurt,, they long to release tears that on,y seem to come in spurts.  My arms ache to hold you both, my ears long to hear your laughter.  I am at a loss as to what to do and how to live.  

I guess I will just keep putting my feet on the floor every morning, breath in and out, and pray,, for guidance through this new life, for peace to remain in my heart, for the comforter to stay by my side, to be my constant companion, for prayer to be in my heart and for dill chips and eggnog to taste good again,,,,  one day.

Christmas 2014

*editors note,, this is a venting session, a place where I can put my thoughts together and somehow let some of the pain escape,, I am in no way looking for sympathy*

It's my most favorite time of year.  The glistening decorations, the music, the love that we show one another......  Christmas!!

As I was walking through a store yesterday with my mum looking at all the glorious decorations, tears welled up in my eyes and I whispered in her ear,,, "it will never be the same will it?" 

I find myself lacking the enthusiasm to wrap presents this year, to celebrate.  I feel like I am living groundhog day over and over and the tape isn't even skipping. 

I am completely overwhelmed by the love and support of all of our friends, family and community!  The outpouring of love, the sweet tender mercies that I see every where I turn.  I have no words to express my gratitude and appreciation for all of it.  The hole in my heart is still there.  And it will be for the rest of my earthly life.  My arms ache to hold my husband close, my forehead aches to feel one last kiss from my baby boy who was trying so very hard to be a man.  I walk through stores and think how am I supposed to do this for the rest of my life? I wonder if the tears will ever stop, if the ache will ever lessen,,  I never thought I would be a widow at 42, *a word that is so very hard to say* and I never dreamt I would be burying my baby at 11 1/2 yrs old.  They were my entire reason for getting up in the morning.

My husband was AMAZING!!!   the way he made me feel, I was THE most important person to him in the entire world.   He loved me so much, and he let every single person he met know exactly that.  I was his sweets!  I was all that mattered.  He took such good care of me, that I think I have forgotten how to take care of myself.  He was my rock,, my mediator, my helpmate, my ego boost, he held me in the highest regard, nothing else mattered to him except my happiness.

Our baby boy, was the spitting image of his daddy.  He loved being the center of attention.  He also loved being alone to create impressive lego structures!!  He knew when I needed a hug, or a kiss or even just a sweet smile.   He greeted me with a HUGE "HI MUM" every day I came home from work,,,  being ever so alert to hear the garage door open so he could open my car door when I pulled in.  He loved telling me about his days, and what he and his dad had done that day,, or how his dad had told him no on something and how unfair that was. 

How I love for those days again.  What would I give to hear my husbands dialysis machine annoyingly beep loudly, letting us know he had rolled onto the tube accidentally, to hear levi stomp down the stairs to his room because we wouldn't give him just $10 for that awesome bionicle on Ebay. 

The tears keep coming,,, no words can stop them.  No amount of normalcy can or will close the hole in my heart.

 And then I see a picture of my Savior embracing a weeping woman and I think,,, That's me, He's got this.

My faith has grown by leaps and bounds throughout these past 10 days.  *10 days,,, it's only been 10 days*   The gifts, the hugs, the outpouring of love from a community we have barely moved into,, the tender mercies all over the place... the way everything just fell into place, I know that my Father in Heaven has a plan. 

So I will continue to get up every morning, breathe in and out, as I plant my feet firmly on the ground.  I will continue to wipe the tears from my eyes, as I go throughout this new life of mine, they will lessen I am sure,  I will continue to look for the tender mercies that surround us, I will return hugs just a little bit tighter and a little bit longer so there is no doubt of my love for you, I will pray a little longer and sing a little louder, and I will continue to have faith in the wonderful Plan of Salvation. 

A day in the life...

There have been stories on the news here lately about organ donation and the "pecking order", if you will.  My sweet hubs wrote this yesterday on his Facebook, not to bring pity onto him or us, but to give people a look at what it is like on an average day for someone with End Stage Renal Failure.....

Please don't just scroll on down your facebook because this post is a long one. This is extremely important and is rarely talked about. In the US today we have 101,170 people waiting for kidney transplants. There are roughly 11k transplants performed each year from dead donors and about 5k living kidney donors. I know these are a lot of numbers but hang with me for a moment and you will see my point and message. 12 people die every day because a kidney donor was not available. There are roughly 230 million adults in the US, the majority of which are healthy. If just one out of every 2273 people that are healthy would become a living donor, the mass majority of these people would have a 2nd chance on life. That is less than .0000099 percent who would need to donate to eliminate the current backlog of people waiting. Sometimes I wonder if people realize just how sick and weak people can become from ESRD(End Stage Renal Disease). I was diagnosed in 2012. I hit ESRD in March of this year. End stage is basically when you start Dialysis, To be kind of forward about the subject I really don't tell many of you all this disease has done to my life and the life of my family. Mostly because I certainly am happy to be alive, and I consider myself to be lucky. I have one of the most amazing women in this world as a loving wife, I have 6 awesome kids and I have been lucky to maintain some semblance of a life thanks to my family and church. But without sounding like I am complaining, let me take you through a day in my life.
I spend roughly 9 1/2 hours every night hooked to a machine. I have about a 15 foot hose hooked to my abdomen through a dialysis catheter that has been surgically placed. I should mention that I have had 4 surgeries in 2014 to deal with complications with this Catheter. Each time I watch my wife look at me as I'm being wheeled away, and I can see the fear in her eyes that it could be her last time she gets to say goodbye. It is one of the hardest hings about all the surgeries I have undergone in the past 9 months, which is a total of 6. So like I said 9 1/2 hours hooked to a machine, most of which I try and sleep through. Some nights that works pretty well and others not so much. I get to bed about 11PM each night. and I unhook from the machine about 8:30 the next morning. When I unhook I lay back down. Not because I am lazy but because my body isn't ready to function. About 10:30 or 11:00 most morning I finally can get out of bed. But there is something I do almost every morning before I can eat anything. I vomit. Usually it is the reason I am up, because I could not contain it any longer and had to run to the bathroom(I use the term run very lightly). One other problem, since I have not eaten, there is nothing in me to vomit, but my body still goes through the routine for about 10 to 15 minutes. I have tried getting up sooner and eating, I have tried many things to change this, but it just has to be this way with how my body deals with kidney failure.
When the dry heaving finally stops, I head down stairs to the fridge. I eat one slice of toast, nothing on it. I can't have butter or toppings. On a real good day I eat a couple eggs too. Then it is back up the stairs, and back into the bed, because I am so worn out from making this feast of a breakfast, I need to rest my neck and back. I usually fall back asleep until Levi gets home from school after 3PM. I try to get up for a while to spend time with Levi and Rhonda. Some days that works, some days my body just says no. But pretty much every day I am laying back down by 4 or 5 PM. On my best days I make dinner. Nothing fancy, but after that I am back on the bed due to exhaustion. I usually lay in the bed drifting in and out while Rhonda gets ready fr bed. She works early in the AM, so she goes to bed wile I am still watching a little TV. Then by 10:30 or 11:00 I am hooked back up to my machine. The only thing that breaks this routine is medical appointments and Church on Sundays, I go to all 3 hours of church, sitting the whole time, and as soon as I am home I am back to bed because sitting for that long really takes a lot out of me. But I will not skip those 3 hours usually even in I underwent surgery that week.
That is what ESRD has done to my life. It has taken my ability to support my family, it has taken my ability to be the Dad I want to be, it has taken my ability to be the husband I want to be. I want nothing more than to go to work and support my families needs. Those who know me best know I worked very hard and provided my family with a successful financial situation. I used to drive a Mercedes S500 which was paid for in cash. This car was sold long ago to pay medical and family bills. Now I can't drive at all. I have to get shots in my eyes every 6 weeks to continue to see, but it does not allow me to see well enough to drive. And yet I am thankful I can see at all. God has provided me with so much, and I thank him for that.
Back to the reason for this post: You can stop the suffering of a family like mine. You can do something that will change the lives of all who are around you. If you can't donate as a live donor, which some cannot, at the very least sign up for the national donor list. Most people have no idea you can donate a kidney and live the rest of your life normally. Most will be back up and going in 10 days or so, while you have the power to stop the suffering of a family or even just an individual. You can give them that 2nd chance to be what they have the potential to become. And in most cases the insurance of the recipient will pay your hospital costs and medical expenses from donating.
Please know that in me writing this, I am not complaining. Those who know me well know how I deal with the challenges. I thank God everyday for all I have. I just wonder how many people know they can donate and help save a life and still live a normal life themselves. OK this has really worn me out. Back to bed I go. Thank you for listening to my plea. Please share and pass along to anyone who you think would benefit from reading this.

Another surgery

Ya know,,, when life throws you lemons you can sit and cry and whine about it, asking questions like why me?  What did I do to deserve this?,,, etc, etc... or you can suck it up and know there is a reason for everything, and someone, somewhere in your life, you,, your spouse,,, a friend.... someone has something to learn from what you are going through. 

My husband continues to amaze me with his strength to just suck it up and carry on.  Forgive me if I have shared this before...  his morning routine is,,, get up, get his balance, throw up or dry heave, whichever his body sees fit to do, *yes every single morning*,(the joys of nerve damage in your stomach), use the bathroom,, try to make it back to bed without passing out, or downstairs depending on how bad the dizziness is, to do a few chores.  EVERY SINGLE DAY,, and every so often his body decides to mix things up and throw in an infection just for fun. 

His dialysis catheter has had an on again off again infection since May of 2014,, antibiotics won't kill it off. It is a rock hard lump, almost cyst like, right near the exist site of his cath.  It oozes, and bleeds thick red blood at times, and at other times, it just sits there.  It goes away and the swelling subsides while he is on antibiotics but withing a month of finishing them, and I am being generous with the timeline, it comes back.  It is hot and painful to put any pressure on.

We put a call into his nephrologist in st george, who got in contact with his nephrologist here in SLC, (we had to switch dr's) and they decided to operate and move the catheter and take out the infection.  YAY!,,, this decision was made on Monday,, and surgery was scheduled for Wednesday,, no messing around here.

We were at the hospital at 6:45 am, surgery scheduled for 8:15,,, they finally took him back at 9:00,, it was supposed to only take an hour - an hour and ten minutes, however,,, *and this makes me sooo freaking happy*  The surgeon was sooooo careful about not spreading the infection, that once she was able to get the old cath out, and that in and of itself was a challenge.. the infection was actually around the 2nd cuff holding it in place, she had every person in the room change their gloves, get new equipment, new drapes, everything! YAY. So the surgery went a little longer than expected, and she made sure to have the OR nurse call me and let me know what was going on and why it was taking longer than we planned.  YAY for communication!

When all was said and done, we were home by 3 pm.  The patient tucked into bed, against his will, pain pills by the bed, and his ever doting nurse by his side.  He didn't take a pain pill until later that night, and hasn't taken one since.   He doesn't complain.  He tries so hard to not "be a burden to me", his words not mine.  He is never a burden on me.  He is the love of my life.  My rock.  My safe place is in his arms.  When we were allowed to sit with him after surgery I pulled up a chair and just hugged him, tears just started falling.  *I tend to deal with stressful situations with humor,and hold everything in so he doesn't see me cry right before he is taken back for surgery*, and he just kissed them away and kept saying over and over that he loved me and he will always come back.... Every time they take him away I am scared he won't come back.  I mean how many times can you put a person to sleep and cut them open and have them wake up ??  SO far,  our count is 8!  I'm really hoping the 9th is the kidney transplant. 

Really?!?!?! And we are on the list!

Things have been pretty quite here on the home front,, in regards to Todd's health anyway.  He is still on dialysis every night, for 9 hours he is tied to a machine.  He still has all the side effects from his meds, which make him sicker than anything,, every single day.  It's just part of our daily routine at this point,, get up, throw up, shower, brush teeth, get dressed,,, etc, etc. 

We have been super busy with moving to West Jordan.  We needed, (I needed?) to be closer to family, for one thing for support,, for another, so I didn't have to miss work for all these dr's appointments Todd has.  We are in a cute 4 bdrm home that we love love love!!! Our 11 yr old especially likes having his very own space in the basement!  I've been told he's preparing it to be the man cave for when his oldest brother gets back from his LDS mission in Macon Georgia in 14 months. 

Being in West Jordan also means we are a lot closer to the transplant center.  Like 5 1/2 hours closer!! Huge benefit for when a kidney becomes available! 

We got a call from Barb at the TC (transplant center), yesterday saying Todd needed to get down there asap to have his blood drawn for cross match testing.  She doesn't want us to miss out on a kidney should one become available.  *stay with me here,, this is where it gets confusing*,, Todd's blood type is AB+, the TC has a scale on which people are numbered for match quality,, *yep I'm confused too at this point*  it goes from 0 - 100, 0 being the BEST quality for a match, and 100 being the worst.  Meaning if you are a 0 you have a fantastic probability of finding a match for a kidney,, 100, your chances are minimal at best.  Todd is a 0! So being AB+ and a 0, he can accept ANY kidney out there... ANY!  So he is on the list waiting for a match.  No Idea where he is on that list,, he could be number 30,, he could be number 500,, we haven't been told yet....

HOWEVER, and here is the exciting part,,, if the TC gets a AB+ donor, that kidney can only go to an AB+ recipient. Enter the rush to get his blood panel done.  He gets to move rapidly up the list, like to the top if an AB+ donor becomes available.  Apparently its a rare blood type.  *No clue*

So,, YAYAYAYAYAYYAYAYA! Now we wait!  In the mean time, we have decided to raffle off our/MY VW beetle to fund raise for expenses.  Although they have dropped considerably since we moved up here, they are still high, and being as I am the only one working our income is limited.  IF any of you are interested in buying a ticket for the beetle, you can text me or my hubby at 702-816-1388.  Thank you again for all your prayers, love, donations, and all!  Wouldn't be able to do this without it!! 

Love and healthy wishes

Rhonda

If it's not one thing.....

Yesterday was a busy day for us! Thankfully one that ended with Todd and I both able to sleep in our own beds!!  We were expecting to be sleeping in the hospital in St. George, or at the very least crashing at our oldest daughters apartment again.

Todd had a PET test yesterday, which is where they fill him up with peritoneal dialysis fluid and keep taking samples every 2 hours to see how fast his body dialysises. (apparently that is a word!)  We should have the results of that soon.  It's nothing major, just making sure we are using the right fluid and the right amount every night.

Todd has an infection in his abdomen, where his catheter for dialysis is sitting.  Not at the exit site itself but in where the catheter is inside. There is a very hard lump about the size of a baseball, I think that is bigger than a soft ball, that you can feel,, and hear his wish to smack ya if you push too hard!!

 We were worried that the Dr. would need to go in and move the catheter and cut out the infection as it has been about a month now, and the first round of antibiotics didn't seem to do the trick.  YAY for stronger antibiotics!!  We are praying these work and he won't have to go under again.


He also completed his LAST class before being put on the transplant list! YAAYAYAYAYAYA!  So now we wait for a donor.  We are trying to come up with another fundraiser to help offset the cost of living for a live donor while he/she recovers from that surgery. More on that later!!

People keep reminding me that I need to make sure I get enough rest and such, as I tend to run ragged mid week, after working and home responsibilities,,, and I guess I should rest more... Nothing like falling asleep in a dialysis chair while hubbsters is being tested in the chair just down from me!  Hope everyone enjoyed my nose concert! haha, thankfully no one said anything to me, but Todd did say I snored soo loud at times he could hear me and he had headphones in.    hahahaaha, at least no one had to keep checking on me to make sure I was still breathing! (looking at the positive!)

If anyone would like more information on being tested to see if you're a match for Todd, or anyone else, please email me at savemydad70@gmail.com, and I can get you the contact name and information of who to talk to at the transplant center.

Thank you again for all your love and support!!