Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, January 15, 2009

Wish to God

I decided last night my husband and I were long overdue for a serious heart to heart talk. It felt like the time was right. We’ve been functioning together, but separately, for too long.
I kicked out Brynn (Sorry, hun, but it was the right thing to do), and I stuck Xander in the bath tub.
It’s been difficult to connect with each other due to our mismatched hours. I’m good in the early morning, and I’m often in bed by 6:30 pm, worn out and too tired to talk.
J likes to sleep in, he goes to work, and likes to stay up late.
This leaves very little time that is good for both of us to communicate.
If we do find mutual time, we’re focusing on X. We don’t discuss certain adult issues in front of him.
We were choosing to take the easiest path and just not really talking, but that was starting to breed resentments.
Neither one of us were understanding each other.
He thought I was being lazy and not contributing.
I couldn’t stand his pessimism and his undermining my state of health.
It wasn’t about to help either one of us by complaining to our friends.
So we had a sit down and civilly discussed what we both wanted from each other. He wanted me to make an effort in the household. He felt like I was blatantly disregarding what he needed in his environment.
I told him sometimes I won’t be able to contribute anything, because with all my appointments and catering to Xander, my energy was spent, but I would try my best.
We both agreed that we wanted what is best for Xander, and we finally agreed that we were in our situation together.
You think this might have been common sense, but every provider we’ve ever had has not acknowledged that OUR FAMILY HAS CANCER. I have a doctor to treat my lymphoma. I have my own therapist. X has his own therapist. J has his own doctors. None have collaborated with each other to see the effect my diagnosis has had on our situation has a whole.
This is Psychoneuroimmunology 101: our bodies, and our families, function as a whole. Newton said it years ago, “Every action has an equal or opposite reaction.” It is time to apply this, not only to physics, but to life and health in general.
My cancer is affecting the lifestyle of my entire family. The health care system is created to treat individuals in acute situations.
We, as a whole family, have a chronic illness (my cancer has lasted more than 6 months, the accepted time frame where a disease transitions from acute to chronic).
Where do you find somebody to treat that?
You don’t. It doesn’t yet exist, but we’re going to create it. Again, I’m thinking outside the box. I don’t like the box. I opening it to include outside resources that will accept and understand how what is happening to me affects my family, and not only my family, everybody I encounter.
When X got out of the tub and we’d gotten him into his PJs, he jumped on the bed in between us. He told us that all he wanted to ask Santa for next year was for mommy to get better.
He’s never said he wanted me to get better. Last night, It was like he had suddenly found the words he was always looking for.
I’m always telling him to “use your words,” but he does have a speech delay from years of ear infections. He needs to be taught the language.
Since he doesn’t have the language, he’s been acting out. He’s been stomping, screaming, kicking, and throwing temper tantrums. He tries to manipulate situations.
Somehow, we need to teach that child how to express his feelings. God bless whoever taught him those words.
He’s finally been able to say that he doesn’t want to leave me because he is afraid I will die. He is five. He is narcissistic. He’s thinking that if he can just keep me in his sight, I will be fine. He just wants to exert some kind of control where no one has any.
This has culminated into severe separation anxiety and inability to transition. By severe I mean, kicking screaming, hitting. He has been dragged out to the car, physically, on more than one occasion.
If anyone has a better idea on how to deal with this, I invite you to comment. Right now, we’re doing the best we can.
Last night, expanding on his Santa idea, we decided to try to empower him. I asked X if he remembered that Santa was a Saint, and that he was working for God, so X didn’t have to wait until next Christmas to ask for me to be healthy. He could wish to God whenever he wanted!
X was delighted!
He said, eyes wide, “Maybe, people don’t know about this.”
I told him that, at some point, we’ll make a video to tell everybody, but right now, we needed to work out how to do our wishes.
X made sure that J and I were agreeing with him. He wanted to know that our wish was for me to get better, so I didn’t have to go to the doctors all the time and so we could have our pets back.
We all agreed that this was a great wish, and instead of forcing him into the traditional version of prayer, we encouraged him to find a way he wanted to talk with God.
X decided to lie on his back, staring up at the ceiling (or at the sky), and use his fingers to “shoot” his wishes to God. He asked for what he wanted and even used sound effects to make sure the message was sent properly.
I’m going to try to get him on video so you can all see how we “wish to God” for my health.
As a result, Xander now feels comfortable that Dad, Mom, and he are solidly together in wanting to be healthy.
This morning, X still tried to get out of school to stay home with me, but was very happy to leave when the time came. X and I decided to run the carpool today, which I think helped convince him that I was making every effort to be a “normal,” healthy mom.
And, if you didn’t know now you do, the support of friends seems to be every bit as important to a five year old as it is to an adult. I’m lucky for my friends and Xander is lucky for his little crew. I think packing Colin, Mya, and him into the back set of my car, and letting them throw a “mini-party” before school made a big difference this morning.


Bekah said...

Here is to the very beginning, of the beginning of the beginning, of the first steps of normalcy. For you, and your family.

In my eyes, nothing is more beautiful than watching you from the outside, be a mom. I can, feel your words through the screen.

X and J, are both lucky, lucky men.
Know it, feel it, breathe it.

Here's to you Ms. Hillary. To the beginning of the beginning of the beginning.


brynn said...

Don't even begin to apologize for kicking me out. I understand that when you aren't on the same page it is hard to function. I can't imagine having Jacob go through something like this and how I would take the situation. I am sure it is hard (for lack of a better word) for Jon to know what to do and how to be. I still love you and we WILL hang out again! No worries! I am glad things are good today. I'll talk to you soon! :)

Shannon said...

Hillary that is so great you two were able to have a heart to heart!! Sounds like last night really helped X too!! I think of you always my dear!! Call you soon so we can chat!!

Anonymous said...

its me, Colette. I thought about the whole chronic thing and about X, i understand. im not sure where im going with this but-- your my inspiration and my role model!

Anonymous said...

You continue to amaze me ... I read ... & reread this piece ... it is beautiful. As you know, I have a connection to X ... & it goes beyond terrorizing frogs & riding motorcycles ... I can't explain why we connected, but I'm surely glad we did. Please tell him that the frogs are resting ... & that they'll be ready for the annual frog hunting convention when the weather turns warm ... & that it will turn warm, when Mom & Dad are ready to come up & play. I can't wait.

That was an amazing post Hill ... while you & J may have had to face a lot of challenges ... J is one fo the luckiest men on the planet to have you & X.

So stay strong & positive Hill ... & know that you are important to the people in your orbit ... you are important to me.