The song that best describes my life right now

"Bring The Rain"

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty 



Very early on in this trial, two friends prayed that God would be glorified through our family and this trial. I think he has, through no effort of our own but at what he has done for us. I was singing this song this morning and cleaning my house. Just thankful for all that has happened and all that is to come. I am thankful for this trial, it has forever changed our lives and made us view things very differently. Things that mattered before, just don't matter anymore. Priorities have changed and really we have changed most of all.

Good news!!!

Marty has be re-certified, which means our insurance has agreed to pay for his transplant. They have agreed until March, when Marty will have to go on Medicare. Yes, you read correctly Medicare as in the over 65 goverment insurance. Most End Stage Renal disease patients go on it immediately, our insurance has a 36 month cap on coverage. We have to pay a premium to Medicare, so we are just waiting until the coverage on our insurance runs out.

Good news is, he is top of the list and maybe we won't have to apply for Medicare! We need to focus all of our thoughts and prayers toward the donor family. They are the one's who need it more than us, they will be paying a high price for Marty to have life. Pray for them daily and for God to be at work in their lives.

Also, pray for the people who don't have the hope we do. We know a few people who have it far worse, dealing with diseases that have no cure or treatment. We have several friends, who don't get the chance to have a life changing treatment. So please pray for them, God knows who they are.

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When the rug gets pulled out from under you.

Authors note: You might not understand all of this, because we surely do not understand all of this either. We are very confused and things aren't really clear.

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Last Sunday, I started to have a feeling something bad was going to happen. Since September 11,2001 every year the week before my birthday, I start to feel this way. In years past, everyone has told me to get over it and move on. So this year,  when the feeling came I just pushed it off and kept going. Except for the other day when I confided in my good friend Andrea that I was feeling that way.

This morning I started to feel that way again and told myself to knock it off and enjoy life. So the kids and I did our schoolwork and started to clean the house after school. We had the windows open, music blaring and were just enjoying the time together. Marty told me he as a work, his back wasn't hurting when he walked and he wasn't gasping for breath, he thought," This is what it's like to feel good, I have forgotten."  Then the phone rang, it was the social worker from Stanford wanting to speak with Marty, who was at work.

I took the call and the rug was pulled out from under us. The social worker had just called to check in two days ago, a week after they called the dialysis center for his labs and progress notes. When the social worker called, she said nothing of consequence and we just got hopeful that maybe things were moving along.

So when she proceed to tell me that Marty was non-compliant and skipping treatments, it was very upsetting. This isn't the case and he is far from non-compliant, we try so hard to make sure he does what is needed. She started saying things that verbatim sounded like a incident we had a few months back with his nephrologist ( you can read that here ) which has been resolved. The last time we saw the doctor, he told us the labs were good and they would never be perfect. Yes, there had been some issues with his phosphorus and the binders which he takes with food. He did stop taking them because they caused him to vomit every meal.  But, they found a better option and he has been taking them faithfully for months now.

Basically, the social worker accused us of lying and me of trying to "cover" for Marty. She said we needed to admit we weren't doing what we needed to do. That was so offensive, she really was being very nasty and telling us we made her look bad. She didn't want to speak with me and wanted to talk to him. She wanted to call him at work and I told her she was NOT to do that. She told me that he was going to be placed on a inactive list and wouldn't be able to recieve any offers at this time. She told me, that if he is non compliant now, that he will be after his surgery and the insurance is refusing to pay.

 So I called Marty as he left work and told him the news. He was devastated, his whole future seemingly gone and his hope bleak. We cried together as we tried to comprehend what this means for us and our children. Instead of planning for the future, we would start planning for a very different future.

 He came home and called her back, she told him the same things as she told me. She was much nicer to him after I warned her to NOT speak to him in the manner she spoke to me. She told him they needed him to sign a contract saying he would comply with all treatment ( ridiculous since he already does that) Basically, the file from the Nephro and dialsyis center was worded to make him sound like he was skipping treatments while he worked and not taking his medication as prescribed. This all goes back to that incident, even though the labs have improved and everything is better, the insurance wants to capitalize and save some money by denying him. She heard him out and told him she will go to bat for him with the insurance. She made a recommendation which we will follow. She also wanted him to call his coordinator and ask how long he should expect to wait.

He called his coordinator and she told him, for kidney/pancreas transplant he is the top of the list. She also told him that he has been offered organs several times. He has high antibodies and that has prevented a few offers, the other offers were passed on because of the donor and quality of the organs. This was huge news to us, we never knew any of this. She told him that she fully expects him to be transplanted in 6 months to 1 year. She told him he is active at this time.

We are feeling hopeful, we trust that our God is the same he was before this phone call and his promises will be carried out. We do need major prayer right now, that this will be worked out and he will still get his transplant. We are scared, not going to lie about that and the kids are scared. We are tired and weary, we are discouraged. We have done everything and tried so hard, he has kept working when he could be making more money on disability. We go to every appointment, skip out on functions to stay home and do dialysis.

We have so many praises and answered prayers, so many of you have been with us on this three year journey and seen God work so many things out.

Of course, we always think of our donor. The person who will give their life for Marty to have life. Where are they today? What is going on in their life? We must always pray for them and their family first. Pray for them to know Jesus and have faith in him. Pray for them to have their life in order and for their family when they have to pick up the pieces. When our rug is replaced, theirs will be taken from them. They need the prayers more than we do.

A special thank you to Matt and Tam for being there to pick up the pieces this afternoon. To those who called and prayed, to those who messaged and Facebooked us, we thank you also.

I am going to put specific prayer requests here and thank you for praying in advance

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Pray for the insurance to re-certify him for transplant

Pray for the truth to be told and honest answers from the clinic

Pray for Marty to be strong and keep trying

Pray for good lab values 

Pray for the donor and their family

Pray for wisdom and guidance, are we supposed to switch clinics? is the door being closed for us at Stanford

Pray for UC Davis and their program, is this the right place for us

Pray for peace, calm and happiness in the days that we wait.

Pray for rest

Pray for the kids 

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Grandma in the backseat

Elizabeth is more on the quiet side like Marty and she also has his wicked sense of humor. Recently he has taken to listening to talk radio. We were driving to his work the other day and a lady came on one of the shows sharing her situation.

From the backseat I hear, " Save it lady, I don't want to hear your sob story." come from Elizabeth. The tone she said it in and the way she said it, made me think if I turned around........... I would see my grandmother sitting in the backseat. It was quite uncanny.

I guess she takes after her namesake more than I thought she did!

Conner on Main Street

We were driving down the freeway yesterday and Conner starts talking about Disneyland. They are getting excited to go in October and have been talking about it constantly. Yesterday, he brought up the smells of Disneyland.

He said, "Main Street has it's own smell like no other."

I started thinking in my head of all the smells of Main Street. Candy Palace and the warm vanilla smell that is pumped out on to the street. The Bakery and the smell of waffle cones, Coke Corner with it's many smells. The kid has a good point, of course he spent 9 months in utero working on Main Street along with me.

He said, " Well first, I love the smell of diesel when you ride in on the tram." that's more Parking Lot but I will let it slide. The next part was the part where he left me in hysterics.

"Yeah, then there is the whole horse smell on Main Street. You know the have the trolley ride and well the horses poop on the street." he states emphatically. Seriously, of all thing............I was NOT expecting that.

He goes on with one final statement, " and the smell of corn dog oil from the corn dog cart!"

That kid cracks me up, he is so random!

News update, major decisions to be made

Phew, it has been a whirlwind couple of days around here! Phone calls, letters and decisions needing to be made.

Yesterday, we got a letter in the mail saying Marty was eligible for a thousand dollar grant. This grant will be in the form of a pre-paid card and will cover his co-pays at the doctor and pharmacy. Our dialysis clinic was recently bought by DaVita and they work with the American Kidney fund. They have been having us apply for all kinds of programs. Usually we are not eligible because most of those programs are for low income families and we aren't low income. We would never want to take funds from a person with a true need. But we sent in our tax return and we qualified. What a blessing to have some help with something we just count on paying!

 Today we got a call from UC Davis about being listed with their program. The coordinator was very nice and said because of his age and he is relatively healthy, they want to get him listed quickly. We do have a big decision to make though and we need prayer. We have to decide whether to transfer his wait time from Stanford to Davis. Basically, he would have three years at Davis and go back to zero at Stanford. The coordinator is going to get us all the facts before we make this decision. We need to know their statistics before transferring. She told Marty, most people who transfer wait time with three or four years on the books are transplanted within the year. We need to ask what the wait is at surrounding hospitals, because that is what is holding him up at Stanford.

I guess there is a misconception someone mentioned to me on Sunday. The misconception being Marty still works because we need the money. This is NOT true, he works because he wants to be a productive member of society and function normally. His doctors want him to work as long as he can. He wants to be able to get another job if needed someday and not have large amounts of time off to explain. He would actually make MORE money being disabled but chooses not to. It actually would be way easier if he didn't work but he is trying to push through.  He has thought about it on days when he isn't feeling well and weary, I have thought about it on days when I am tired of getting up at 3am for him to go to work.

Thanks for being there and supporting us. We know you are praying for us and rooting us on! We will win this battle and hopefully he will be healed very soon.

Stanford called again today.

It has been almost a year and half since Stanford has called us. This morning while doing school with the kids, the phone rang and the caller i.d. showed Stanford. My heart hit the floor and the adrenline started pumping, " Is this it?" was the thought in my head.

Of course, she asked for Marty who was at work and then I asked what I could assist her with. She was calling to get the dialysis center phone number. Immediately this brought much relief, the center was recently sold and the phone number changed. They are paying attention to things, much to our relief.

Later the dialysis nurse called and told me they were wanting progress notes and labs. She said, this was the first time she remembers them asking for these. Good news, news to be optimistic about but I find myself being guarded not wanting to get my hopes up.

Everyone else has a good feeling about it and got excited. I am being cautious, Marty was pleased to hear something, anything from them.

Maybe time will be soon!

P.S. click on the title if you want to read about the last time Stanford called. That was two years ago, almost three.