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.

Waiting

So now we are done, hope for recovery is gone.  His MRI last week showed progression of the Leptomenengial Disease and his ventricles are filled with fluid, causing pressure on the brain.  We are not continuing chemo.  He is really stable right now, the morphine drip pump has been added to his long list of apparatus that has moved into our home to keep him comfortable.  He dosn't respond at all except for a small eye blink once in a while, he doesn't hold on to our fingers anymore.  What is he waiting for?  It is so hard to see him like this, when he be ready to fly away from this world and that sweet little body.  He is so strong and mommy is so proud of the fight he has put up.  You would think that I would eventually dry up and run out of tears.  But when I think of the future without him and his potential that is wasted, it breaks my heart and the tears come again. 

Christmas

Oh, please, let us get through this.  Let him wake up and see the presents we got him.  Let him show us he is still with us.  I want my baby to talk to me again.  He is so strong, he is still holding on to this life.  I love him so much.  This is not fucking fair.

Quick Update

I wrote this to my care team at Cincinnati Children's.  It got a bit long but I thought it might do as an update on Jr.  Little bugger isn't going anywhere and he is keeping us busy! I jsut cut and pasted this from the email.

Hello all,

Sorry i did not get back to you as soon as i liked.  Here is Junior's current condition in more detail. 

His biggest issue right now still is his secretions. It has caused sudden drops in his pulseox that required some jostling to make him cough.  We are doing suction with a catheter every 1-2 days.  I am giving nebulizer treatments with Xaponex 2-4 times a day.  He is still watching Dora and Diego with his good eye.  It is very bloodshot but he is still actively using it.  We have suspended using the GenTeal drops as they seem to irritate lately and are using LiquiTears a few times a day. 

We are managing pain on an as needed basis with Tylenol, morphine, dilaudid, and Prilosec.  It is still difficult to recognize if he is in pain.  Just today though it seems that coughing is causing pain.  Otherwise, high heart rate and signs of agitation usually are the only indicators of pain.

Now for the big news, we are going to Disney on Wednesday to the Give Kids the World Village through the Make a Wish Foundation.  Dr. Hudspeth at MUSC was a huge advocate for us and things were rushed through very quickly.  It is a seven hour drive from Charleston and we are preparing like crazy here.  Mollie our most awesome hospice nurse is a great help in this.

So anyway, i attached the labs from Thursday, they will be drawn again on Monday.  Please contact me or Mollie Huskey if you have or need more info.  I miss you all and i promise i know the situation that we are in right now and coping the best we can.

Ivie

Tough little guy

On Thursday, we arrived at CCHMC for clinic, in record time I might add. The team, onccologist, fellow, nutrition, coordinator, and social worker, and Pastor Sue (whonactually waan't there but came the next day), so we decidedon a course of action to keep Jr comfortable and with us for as long as possible. Goodbye feedung tube and hello TPNs. Yeah! Well, that nightvhe aspirated and things went very badly, siezure and into ICU with no guarantee that he would recover, and this could be IT. So after a long Adavan nap, the little bugger wakes up and is fine, a bit better than fine due to the ectra fluids.
So, how many more times are we going to go through this, not for awhile I hope. I am going to contact Make-A-Wish in SC on Monday, this little guy needs to see the mouse and god knows so do the rest of us.

No clue what to call this post.

Worst possible news.  The cancer is back and it is untreatable.  We are going to Cincinnati tonite to CCHMC to get him ready to live the rest of his life.  Oh my god, how can this happen? 

Any of you can come and see us this weekend, text, FB, or call to let me know.

He is such a good boy.