weekend roundup 10.09 – 10.11.2010

After much careful thought, I decided to take the girls to see Chad Friday night.
We went to dinner, so we could talk and the girls would have a little time to, hopefully, calm themselves down before seeing Chad.
I called while we were on our way, just to make sure he was still having a ‘good’ day. I had been with him for a few hours earlier Friday, and he was okay. He had a friend stop by for a while, and Chad wasn’t really interested in talking. Other than trying to get out of bed and slide out of his recliner repeatedly, he was…okay.

I knew the girls’ visit would be brief. I planned it that way. And I let them know up front that we would not be staying long.
Carys was giddy to see her daddy. She literally skipped from the van to his room.

He looked at me, and I explained that the girls were with me. I wanted to give him a little advance notice that they were waiting patiently outside the room door. He didn’t show any emotion, and almost looked a little confused. I’ve been drilling him all week with pictures, and he doesn’t, cannot remember their names.

As soon as I motioned for them to enter the doorway, Carys lost it. Poor girl.
She walked, very nervously, to the side of his bed and started weeping.
“Daddy, do you still love me?”
She looked at me for confirmation that he had heard her. Because he didn’t respond. At all. Just a blank stare at the wall, not even in her direction.
Noticing that she was becoming upset, I quickly and quietly asked him a question I knew he would say ‘yes’ to: “Are you feeling okay?”
He nodded and said, “Yes!”
And Carys hadn’t heard me ask him anything – so she thought he was responding to her.
And her little face lit up.
She cried a bit more, but soon found herself curled up with Chad on his bed.
She sat erect, looked me in the eye and started crying.
“Mommy, I don’t want Daddy to die.”
It took me a moment to compose myself, then: “You know what? Daddy is not dying today. He is here today. And you can love on him today. We’ll worry about the rest when it happens, sweetie.”

It was like I had shown her a eureka moment – she dried her eyes, laid her head on his chest and held his hand.
She was so good; so quiet and calm. She was clearly soaking in every moment she could.

Cailyn was nonchalant. She didn’t really want to hug, kiss or talk to Chad.
Which is normal for her.
I snapped a few pictures of Carys cuddling with Chad, and wanted to make sure Cailyn had some pictures too – for her memory book.
She refused, and I had to bribe her – which I felt guilty about. But I know it will mean a lot to her in 15 years, seeing a picture of herself cuddled with her dad, smiling. I think it was worth the promise of a cupcake after we got home.

They chatted for a little while, doled out lots of hugs and kisses to their dad. And then I felt it was time to go.

Carys cheerfully declared, “We’re going to see you again tomorrow, Daddy. Can we bring you anything to eat?”
He shook his head no, waved goodbye and we were on our way home.

girls visit oct
The visit, in a nutshell, was okay.

I had wanted more.
I wanted him to sweep the girls up in waves of hugs and kisses, to remember and call them by their names, to shed a tear or two because he missed them so much.
But, he did not.
And I’m okay with that. I have to be.

What I really wanted?
I wanted him to see the girls; but more importantly, I needed the girls to see him.
To touch him.
To smell him.
To feel his arms around them.
I wanted that for them. And they got it.

I think we were there for about 45 minutes total.
I knew to keep it brief as as not to overwhelm Chad or the girls.
And I hoped we might be able to stay a little longer Saturday.

I hoped Saturday’s visit would be better.
In my gut, I felt I shouldn’t take them again.

They were asking me questions all night from Friday’s visit.
– Does Daddy hurt?
– Why doesn’t Daddy talk very much?
– Why does Daddy’s voice sound weird?

– Why does Daddy have to live so far away?
– Why does Daddy have to have so much medicine?
– Why haven’t we seen Daddy in a while?

I took them to brunch first, and we had a very serious and age-appropriate talk about IT and what the tumors are doing to Chad’s personality, speech and ability to express himself. They seemed to handle it okay, so I was prepared for another visit.

Off we went.

But only this visit wasn’t quite as swell as Friday night’s.
I should have listened to my gut.
I will, in the future, trust myself. I don’t know why I didn’t listen this time.

It started off similarly.
This time though, he was seated in his recliner by the nurse’s station – so I didn’t get a chance to prepare him for the girls’ visit.
They saw him in the large, open area and flocked to him. Handing him cards and crafts they had made.
He still looked confused.
When they walked closer, he said, “Oh!” but didn’t smile or seem excited to see them.
And Carys picked up on that. Tears, immediately.
Again, she asked Chad if he still loved her.
And, again, I had to intervene so she could hear what she needed to hear.
They each gave him a hug and then they busied themselves trying to help me push the chair down to the sunroom.

As soon as they started asking him questions and telling them about their week at school, I could see the pain all over his face.
Instant headache.
So I sent my little messenger Carys down the hall to tell the nurse that Chad needed some help.
She felt like such a big helper.
Cailyn joyfully held Chad’s sippy cup, full of tea, and offered him sips.
He declined. But that didn’t stop her from repeatedly trying to give it to him.
He finally had enough of that and tried to push her.
Her little heart broke into a million shards, and I saw the look all over her face.
She tries to be so brave and act like she is not hurting. But, she is. And she’s letting her guard down a little more and more.

We pushed Chad’s chair back to his room to turn on the NC State game.
Chad received his morphine and I hoped the rest of the visit would go smoothly.
But, it didn’t.

He became agitated.
I figured we had worn out our welcome and prepared the girls to say goodbye.
Cailyn marched over, where Chad gave her a kiss on the forehead. Hugged her. She beamed.
Carys’ turn.
And Chad refused to hug or kiss her.
He got angry. And I don’t know why.
He hit my leg a couple of times, wanting me to move away.
And Carys wept. Big, hot, crocodile tears.
He looked her in the face and told her “Shut up! Shut up!”
That’s not something we say around our house on a regular basis – we just don’t say it.
Carys was crushed. She cried harder.
And then Chad started swinging – trying to hit me and Carys both.
I put myself between him and Carys, tears welling up in my eyes and through gritted teeth, I told him, “This is unfair. You are upsetting your daughter. You look at her. You hug her. You kiss her. And you tell her goodbye.”
He rolled his eyes at me, gritted his teeth and slowly released his clenched fist.

Cailyn was standing by the door, ready to go.
She had enough. And she was scared. Her face was twisted into the tightest frown I’ve ever seen.

Carys looked at Chad, then looked back at me to make sure it was okay for her to step forward.
I assured her it was – and she stepped forward, wrapping her little arms around Chad’s neck.
He put his good arm around her and gave her a squeeze. And kissed her on her forehead. She kissed him back.
Through tears, she told him, “Daddy, I miss you so much. And I love you. And I hate those boo-boos in your head.”

I hate those boo-boos, too, sweet girl. They have taken so much from us.
And I hate them.
I hate what they have done to my family.
I hate that they have taken my brilliant husband away.
I hate that they have taken my daughters’ innocence about life.
I hate them.
I really, really do.

The girls and I finished up the night with lots of little chats about Daddy and IT, watching a movie and a tickle-fest.
And a conversation that they would not be going back to see Chad. It’s just too, too hard on them.
They don’t understand. They try.
And hopefully, one day when they are young women and able to comprehend, they will know I tried and did the best I could to let them see their daddy when I felt it was safe to do so.

I just feel terrible that Saturday’s visit left everyone upset and unhappy.
I tried.
And that’s all I can do.

The girls went to church with friends this morning, and I made my way to see Chad.
He was quiet today – and lethargic.
He slept for a full twelve hours, and the nurse had to wake him for his medication.
I sat in the room for a while, in the corner, watching him go in and out of sleep.
When he did wake up, he indicated his head was hurting.
He slept some more.
He would wake up briefly, and I would rush over to ask if he was hungry or thirsty or tired or hurting or…I just asked whatever popped in my mind.

He didn’t talk to me today, really.
But he did try to kiss me repeatedly.
And hug me.
And try to help me see that my Chad is still in there, and he’s fighting to get out for moments at a time.
So unfair for him. I hurt for him as much as I hurt for the girls and myself.

I left in the early afternoon, and told him I’d be back tomorrow.
He kissed me a few times and I left — wondering the whole time if he forgets if I’ve visited as soon as I walk out the door.
This is so, so hard.

I picked the girls up and surprised them with a trip to the movies.
We ate and laughed and joked.
And came home to dinner and bath time.
Routine is good.

I called to check on Chad tonight around 10:30 and the nurse indicated he was agitated again tonight, but otherwise, good.
We will see what tomorrow holds.

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5 Responses to weekend roundup 10.09 – 10.11.2010

  1. Wendy Dunn says:

    Know that the load you bare you do not bare alone. You have friends, family, acquaintances that have come to know you more through this blog, and most importantly GOD. He is looking over you and your family and will help you bare this tremendous obstacle in your lives.

  2. Skye,

    Chris B. gave me the blog address and I've recently started keeping up with Chad's fight. I just wanted to let you know that my husband and I are praying for you, Chad, those sweet girls and all of your friends and family that have been affected by “IT.” I pray that God will continue to keep you strong and provide you peace and comfort through your continued journey. I am amazed by your positive attitude and strength throughout this. You are an inspiration to me (and many others, I'm sure). Chad seems to be holding his own so far, the human spirit (and body) is an amazing thing. I never knew Chad, but you mentioned him being a little stubborn and I think that continues to hold true as he continues to battle “IT.” Continue to keep the faith and take care of you, Chad and those precious girls the best you know how.

  3. Camillebwatson says:

    Skye, my heart is breaking for you, Chad and the girls! You are all in my prayers! We love you all!

  4. My Gentle Birthing says:

    As I read this post, my heart breaks. This journey is never easy for anyone, and as a parent, it's so difficult to always know how to do things, when to do them, and what to say when they don't go as planned. There is no blanket statement, or bandaid that can heal or cover up the reality that your family is going through. I pray so much for you, your girls, Chad, and for everyone affected by how your lives have all changed so drastically.
    You're so incredibly strong, Skye. Please know you've got so many people praying and loving you, even though some of us don't know you.


  5. Heather Faircloth says:

    🙁 I hate those boo boos, too. We all do. I am sad he wasn't doing as well as he seemed to be during the week. Maybe (maybe!!) he'll have another “good” day soon that the girls can experience…….my heart breaks for all of you. May God bless you all with peace and strength. XOXO, Heather F.

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