The Farmer's Wife, IN: Reese's Temptation CookiesIs there really any bet...

This woman has an amazing blog!

The Farmer's Wife, IN: Reese's Temptation Cookies
Is there really any bet...: Reese's Temptation Cookies Is there really any better combination than peanut butter and chocolate?  I don't think so.  Recently, I was...

A cause for Junior

Please all, spread the word!  There is a Whitehouse petition asking for a pediatric cancer doctor to join the National Cancer Board.  How can there not be one already?  I am making myself a royal P.I.T.A. to get this through.

Here's the link:
https://petitions.whitehouse.gov/petition/add-pediatric-oncologist-national-cancer-board/00md9RzW

It only takes a few minutes to sign up.  There is a link on my FB page where you can share it.  We only have until Jan. 16th to get 25,000 signatures so please, let's get this done.

I have been in awe of all the cancer parents who have become fund raising powerhouses for so many good causes.  I actually felt a bit bad because I hadn't started a fundraiser in Junior's name.  Like, it is the thing to do if your kid dies of cancer.  Well, this is a cause for all cancer families and it doesn't cost a dime. 

Junior's death anniversary is January 15th, the day would go alot better for me if I can help this happen. I am looking for the lady who started the petition, so if anyone can help me find her....

Three Kids

How many kids do you have?
I have three boys, so proud, so full of motherly vigor.
So tired.
Three boys.
One is always too small, one always too big, one in the middle, forgotten.
Then I had only one, so sick.
All my attention to one sick little boy. 
Hospitals. Treatments. I only had one.
Now I have two, good boys.
So sad, two boys, I wish I had three.

Good News/Bad News

I read today of yet another so-far-survivor of ATRT, I know of two that seems to have been similar to Junior.  One gradutaed Kindergarten today and one had yet another clear MRI.  One had radiation the same place Junior did, one has a mom who changed his diet to foods to help and opted out of radiation.  I am happy that they are doing well but I am still jealous.  I have a multitude of doubts about his treatment, we could have opted out of radiation, I could have changed his diet, the hospital could have started him on TPNs earlier...and on, and on.  This sucks.

One thing is for sure, death is no big deal anymore.  Dad and I are to the point now that we totally OK with our own mortality, who is going to get to see Junior first?

Milestone Coming

First I want to thank all the people who have looked at this blog in the last months even though I have not posted.

Junior's fourth birthday is coming June 21.  I cannot even bear it.  What are we supposed to do?  Birthday cake graveside? 

I haven't looked at any of the AT/RT sites I used to go to. On Facebook, I see the families who haven't lost their child and I am so jealous.  I see the families who are about to lose their child and I have no words of encouragement.  I see the familes who have lost a child and I feel no kinship, all we have in common is misery.  I want no company in my misery. 

I have my family still, and I appreciate them so much more, but I still give time to Junior.  When I am doing dishes, folding laundry, working at night, those times are for him. 

Hey Dad (Manfred Sr), has a great idea.  If we get to go on our amusement park trip this summer, we will get shirts saying "Junior Memorial trip 2012"  or something of the like.  I think its a great idea.  Their is also going to be a stone placed at "Give Kids the World" in Orlando. 

We still love you and miss you baby.

45 Days

Yep, still the grief takes my breath away like I have been punched in the gut.  Not every minute of the day but every hour.  Improvement?  Healing?  Not sure.  So maybe we will get to the point where I will only feel like screaming in despair and pain once a day.  I do it you know, scream.  In the car, by myself, at night, alone. 
But for now, I get out of bed everyday, I work, I am still a mother and a wife.  Manfred, my husband, who is going just as much if not more grief as I am.  We talk, we are in disbelief that he was taken from us, shell shock.  We fought a war and lost.  He knows so much better than I how people are able to survive complete destuction of life and still carry on.  He grew up in Germany, hearing stories of the war, and the rebuilding of lives and families that were torn apart.  But a blown out building can be rebuilt, if only this was as easy. 
I am not sure how I can honor Junior.  Or to what extent I should.  For now, my pain is what I have and I am holding on to it until the day I do not need to anymore and I can remember my baby with joy, but that day seems so far away.  My pain is like my love for him, it is real, and I can feel it if I cannot hold him.

24 Days

There is still nothing right about this.  WRONG WRONG WRONG WRONG WRONG WRONG WRONG WRONG WRONG WRONG WRONG WRONG WRONG WRONG FUCKING WRONG

There is no peace, there is only a gaping hole where he used to be.  He died, in my arms, silently.  I don't know if he was afraid.  I couldn't give him any peace. 

Uh-uh, how can he be gone?

Most of you didn't know this kid.  And my baby is no more special than yours but Junior was like living light.  He never complained, he was so good, so happy, so funny, so caring.  How can that kind of life die?  Tell me all you want that he is with God or Jesus or whoever the fuck else, or in a better place, or looking down on us, it's all bullshit.  I need to know what happened to that bright shining light that was Junior.  I ask the stars, I pray for God to give me peace, I look everywhere for a sign.  Nothing.  Baby, are you OK?  We miss you so much, mommy needs to know that you are safe and warm and happy.  I am so sorry, so fucking sorry. 

A Peek

A Peek Into Heaven

By Callie Sanders Thornton
Just one little peek into heaven,
Is all I'm asking for today.
I just want to know how he's doing,
And heaven seems so far away.

Is he playing on the clouds with angels?

Is he laughing and running today?
Does he miss me?
I guess only he knows.
Oh why does heaven seem so far away?

If you just let me look for a moment,
To catch a glimpse of his sweet smiling face,
I promise I won't try to take him,
I know, he's in a better place.

Just one little peek into heaven,
Is all I'm asking for today.
I just want to know how he's doing,
And heaven seems so far away...

Almost made it

The grief comes out of nowhere like a punch in the gut.  Baby, I miss you so much.

“It is such a secret place, the Land of Tears.”
― Antoine de Saint-Exupéry

Day Two - Adjustment begins.

So now the hard part is adjusting to not being Jr's full time care giver. I must have worn a groove in the floor to the couch because I cannot walk through the living room with stopping at the place where he was his little bed was on the couch.  In the past four weeks, Jr. needed nearly round the clock attending with medicine administration, monitoring stats, suctioning out secretions, hooking up TPN feeds, and, of course, repositioning.  I do not know how I was going to cope with it for much longer.

You hear about others who begin to "wish" for the passing of a terminally ill loved one to ease thier suffering.  I have to be honest, it works both ways.  When I would have those thoughts, I felt very ashamed and guilty.  As only mothers know the lengths they would go to for their child.  I am still coping with that. 

The funeral is set for Thursday.  Here is the link to the online obit  - http://www.jhenrystuhr.com/.  Please take a moment light a candle for my shining star,  The obit will also be in Thursdays Detroit Free Press.

“It is such a secret place, the Land of Tears.”
― Antoine de Saint-Exupéry

Comfort

“I'll look as if I'm dead, and that won't be true.'
I said nothing.
'You understand. It's too far. I can't take this body with me. It's too heavy.'
I said nothing.
'But it'll be like an old abandoned shell. There's nothing sad about an old shell...'
I said nothing.
'It'll be nice, you know. I'll be looking at the stars, too. All the stars will be wells with a rusty pulley. All the stars will pour out water for me to drink...'
I said nothing.
'And it'll be fun! You'll have five-hundred million little bells; I'll have five-hundred million springs of fresh water...'
And he, too, said nothing more.”
― Antoine de Saint-Exupéry, The Little Prince

Day One

No luck, it wasn't a nightmare.  The sun rose today and the world kept going.  Dammit.

There's my little chunk at about 6 months old.  Always happy, he was so good at being happy.

Going today to make arrangements for the funeral.  I will update as soon as we get back.

Manfred Josef Froehler Jr. 06/21/2008 - 01/15/2012

Peace

Junior passed away at 6:58 this evening.  He was in my arms, his brothers and dad were all with him.  He is my hero.  Mommy is so proud of you.  Fly away baby.

There is more I want to tell you, but I think I may think on it for a while.  Still so numb, unbelieving.