Scott & Sunny

Scott & Sunny

Thursday, September 20, 2007

Absorbed. I think.

If I've learned anything since January, it is things aren't absorbed in real time regarding such events. We're now almost 2 weeks since Scott's discharge, and Sunday will be 5 weeks since we took off to the hospital due to fever.

5 weeks. Over a month now. 22 days past learning he had a problem in his head. And all the things that happened just now seem to be truly processing in my mind. It is as if you wake every now and again from a nightmare and try to sort it all out in your head. Some parts make sense, but it never all seems to be a puzzle which all the pieces are found.

Since January, I sit at times and just feel the realization - Scott has cancer. Same way tonight with the latest issue - Scott had a stroke. It doesn't come at a given time. Doesn't come when you're trying to sort it all out mentally. It comes when it wants.

When the things actually happen, they seem surreal at that time. Until your brain seems to fit the puzzle together and let's your body actually work somewhat normally - that's when it all hits you like a truck full of bricks. The whole ordeal is an unimaginable pain deep somewhere inside. You can't pinpoint it to your stomach, heart or head. It is just a biting, non-stop pain. You read about kids with cancer. You read about people having strokes. You think "that must be awful".

The reality is far more awful than any of those things you can imagine. The pain doesn't disappear with a couple of Tylenol and a glass of water.

We're supposed to be able to protect our kids, and at least help them deal with the unfortunate things that happen in life. This leaves you feeling like a bumbling oaf, helpless to fight something you can't even see. Helpless to really 'make it better' for the little kid looking to you as the savior or the one that can 'fix it'.

But it is no dream. It is very, very real. Stephanie has somehow done very well in dealing with the shots at home. It's horrible for a mom to have to stick her son with a cold needle square in the stomach twice daily. We're supposed to be the one's that come when the bad things happen. Ward off the dangers. Now she has to be in the role of "person with needle". Scott really is a champ with the shots most of the time. But sometimes, like tonight, he's just a wreck before it even happens. It's terrible and you want to just say 'ok, we're not doing this tonight'. But that is not an option. Diligence is mandatory, and can never be slack.

Scott and I went to clinic this morning, and he was full of beans as Stephanie says. Very good mood and even wanted to visit the inpatient floor (something he rarely has a desire to do). The nurses on today were pleasantly shocked to see "Scott". The last time most of them saw him, he was far from himself. The last time some of them saw him, "Scott" wasn't home. He happily showed them his poor tummy, which looks like a battle zone of some type, which is also something he certainly would do nowhere else outside of home.

He's come back from this horrifying event in an amazing (to us, doctors and nurses) manner. I'm very hesitant to say he's like it never happened - but that is the way he's acting. I'm hesitant because the fear this beast puts inside you. Fear of too many things to count. More fear than the brain can process at times.

I think that is the worst thing about Scott's disease - it makes your brain work in a way that nothing seems certain. Like the doctors seem to always say - there are no guarantees.

I'm not writing all this to be a downer for folks. I just trying to give some insight into something that doesn't work in logical terms or adhere to any given schedule. His protocol is a schedule, but a schedule that is quite fluid with any bump in the road. This was no bump. It was a mountain. I'll never forget Stephanie saying the words to me - "David, what if he doesn't come back?"

I can't recall the exact thoughts I had when she said that, and I probably don't want to recall them. But I do remember at that instant, with all that is happened to Scott, I felt more helpless than I've ever felt in life. I had no idea what to do for her. No clue what to do for Scott. How do you explain to Derry what has happened? No clue how to deal with it myself.

We do have our Scott back, and we have him back much quicker than I think either I or Stephanie or any nurse or doctor would have ever guessed. And we are ecstatic about that fact. But we remain wary. Remain on guard. There is no rest with this enemy. It is an absolute bastard that must have a glaring eye trained on it nonstop.

7 comments:

Anissa Mayhew said...

David,

Wow, your words are so powerful and so full of truth and the honest feeling that every parent of a child with cancer....a life threatening illlness at all...is going through.

I just encourage you to be strong, to be David's greatest advocate, to use what you know now to let others know how devestating this disease is.

I hope to see you and Stephanie and the boys soon. I don't know when your schedule will give you a few free minutes, but when it does, I look forward to seeing you

My heart and prayers are always with you. Scott's beautiful smile truly stole a piece of my heart.

f.r.o.G.
---Anissa
www.hope4peyton.org

Sandie said...

You two are never to worry about being a downer to any of us who stop by here. I'm sure I speak for everyone when I say we come here to support you. You are not to worry about us.

You are all doing an amazing job of riding all the bumps in the road. Simply amazing.

I'd expect those head shaking, stomach punch, "Holy crap" moments will continue to occur for some time. How could they not?

I hope those bumps fade in the rear view mirror for you all soon.

Lots of love to you all.
xoxoxo
S.

Staci said...

David,

Thank you for this post and your willingness to share the ups and downs of Scott's treatments. You are certainly not being a downer... I know David and I stop by here every day to see how Scott and the family are doing and we are here to support you all!

Have a great weekend!

Hugs, Staci and David

Laura said...

David,
What you wrote was real and truthful and raw. You are NOT a downer - you ARE one heck of a dad and husband (and writer.) I know that even on the good days there is still that beast that Scott and your family has to face. My mind can't comprehend what that must be like. You are all so strong. I just want to be here to support you all any way I can. I can tell from all the loving people on this blog that write and check in here that you have touched a lot of lives and that you mean a lot to so many people - friends, family, etc. I think of each of you everyday and you are always in my prayers. Never worry about what you write on here - we are all here for each of YOU. Take care and thank you for sharing what you did.
Sending Hugs, Angel Laura

Grandmama said...

Son
You are never a downer to us .
We just wish there was something we could do to help you all.We also feel helpless.
You all have been so strong I really do not know how you do it .
It is just something you do because you have to .
I know it has got to be awful for Stephanie to give Scott those shots.
Please just keep the blogs coming. You have a lot of family & friends. Who are with you every day.
It's good for you all to send the blogs and vent .
You need to save all your blogs about this and write a book. It would be unbelivable.
I would like to thank everyone for their love and prays.For our Son and his wonderful family.
We Love You All And We Send Our Love and Prays.
Grandmama & Papa [ Mom & Dad

Zara said...

At last - I've worked out how to get back on to this thing!!

I have been following what all of you have been going through regularly, and thinking of you all.

David - we've only met once I think, and Steph not many more times. But I can totally relate to your feelings about trying to process what you've just been through.

I am staggered by the strength of all of you. One day you will look back on this and wonder how on earth you got through it all. But you do because you have no choice. And all of you are just so much stronger than you ever dreamt you could be.

I am so delighted that Scott is back, and he made it through this latest challenge.

To all of you, I wish you the strength to face off the challenges that you will inevitably have to continue to deal with.

And we all send our love

Zara, Tim, Ellie and Harry Hogg

Sandie said...

I hope each of you found something to enjoy this weekend. Some peace, something to laugh about, joy in each other's company. It was a lovely fall weekend up here in the NE. I hope your weekend was lovely also.

Thinking of you all.
xoxoxox
S.