“How are you doing?” This is always the question that follows the first one, “How is Owen?” “I’m fine” is always my reply.
Truth is I’m not fine. I haven’t been fine since they diagnosed my son with cancer 2 years ago. Truth is I don’t know what I am any more…
To say “I’m surviving” – sounds like I’m the one personally battling this hateful disease.. I’m not. I’m “hanging in there” sounds like I’m just sort of hanging out waiting for a cure… I’m not. I don’t have the words to express how I’m feeling. I’d like to say I’m tired… the kind of tired where just to lift a finger feels like too much effort. It doesn’t matter how much I eat, sleep or exercise… this feeling of being perpetually tired just surrounds me. Someone might say “you’re depressed” but to me that doesn’t seem like the right word either. Mainly because I still manage to have that voice in my head saying “get the hell out of bed – or why the hell are you laying around? When you’ve gone through all that your son has gone through then you can take a break… until then suck it up“.
I know I’m angry but there’s no real place to focus that anger. I don’t wonder why my kid not yours. I understand genetics, environmental risks, and the cycle of life. I believe in science, research and medicine – I know that while all the tests they are running on my son may not save him – they may one day save yours.
I’m angry because his days are no longer normal. He alternates between being so tired that his days consists of moving from his bed to the couch and back again. That he has pain and that it’s become a norm. We now measure it on a scale of 1 to 10 to determine whether we should contact the doctor or not.
I’m envious… and this is the one that makes me feel most guilty. I’m envious of those that are winning against his disease. While on one hand they give me hope on the other hand it slams into the gut the reality that those same medicines aren’t working for him.
I’m scared… I’m scared because all the studies reflect whether a patient has made it to five years. I wonder will we have 5 years with him. At that point he’d be 19. Or will it be less? Is it pointless to hope for more? How will his brothers, his dad and I be if he’s no longer around? Will his youngest brother remember there was a time when O-wee wasn’t sick?
His disease has already changed us all – made us painfully aware. I know there is a slogan that says something similar to “cancer doesn’t define me”… and I agree it doesn’t define Owen. But it does define the path that our family is on. It’s changed us all.
And lastly I have regret… I have such regret that my kids, their cousins, our family… no longer have the peaceful innocence that I had growing up. That I have to pause and think when my 8 year old asks “Is Owen going to die?” before giving my answer “‘not today”.
Partial Lyrics from “If you’re going through hell”
Artist: Rodney Atkins
Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I’d fall right into the trap that they were laying,
But the good news
Is there’s angels everywhere out on the street
Holding out a hand to pull you back up on your feet
The ones that you’ve been dragging for so long
You’re on your knees
You might as well be praying
Guess what I’m saying
If you’re going through hell
Keep on going, don’t slow down
If you’re scared don’t show it
You might get out
Before the devil even knows you’re there
Least anyone be concerned after reading this article… I WILL NOT FAULTER in my support for my son… so regardless of everything else. I AM HIS MOM… And I WILL NOT let him down.
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Deena,
This was so well written. You should be commended for your courage and honesty! Keep writing.
Deena, please keep writing. You honesty in words helps everyone, even those of us not directly attached to your situation. I read your words, and I hug my kids tighter. I read your words, and I get perspective on the world and realize my problems aren’t that big. I read your words, and I know that you are going to be ok because in your words are such strength.
Your honesty is helping you and us. I know you don’t have any answers, and that’s ok. Your words are so powerful.
Keep writing and keep fighting.
Oh Deena. Thank you for sharing. I have no words – and they wouldn’t mean anything anyhow. We continue to pray and be completely inspired by the fact that you DO get up everyday and continue and that Owen DOES continue to have a good attitude.
Deena,
I already know that you know how lucky you are to have Owen in your life, but don’t ever forget how lucky he is to have you in his. Our kids always seem to amaze us, no matter what the situation, and Owen is a perfect example of this. His love, and smiles will continue to carry all of you through this time of uncertainty. The Bhatia’s, Ajay, Patty, Brittany and Caitlyn
You put your thoughts into perfect words. I can’t imagine the strength and fortitude it takes to work through everything each day. But, I can say I’m sure that your outlook and love helps to give Owen and his brothers the support they need. All of you are in my thoughts and prayers.
Thank you, Deena — that was a beautiful, powerful message to remind me of how much I need to be grateful. I get down over such stupid, petty things, and then I read this and realize the pain that you are going through. I pray for all of you daily, and I’m still hopeful that the Lord will decide to do a miraculous healing on Owen (He can, you know). But I’m praying for your strength and comfort, as well as his relief from pain. I forget to pray for his brothers specifically, but I’ll add them in. Because they’re younger, I forget what this is doing to them, but I’m sure it’s had a tremendous impact on their childhoods that will never be changed. On the other hand, they’re probably becoming much more compassionate human beings because of this. One of my favorite Bible verses is “God works all things together for good to those who love the Lord and are called according to His purpose.” (Rom. 8:28) I held onto that one a lot when my husband was battling cancer. A lot of people love Owen and you that you hardly even know — please remind Owen of that!
Powerful message. I can’t even begin to imagine. Praying for all of you.
Deena, I can’t begin to imagine how tough your days are and the pain that Owen endures daily. Reading your entries is my constant reminder that my bad days aren’t bad at all…and that life is so very precious!! I continue to pray for Owen and y’all!!! Lots of love to y’all!!! Xoxo!
Deena, there are no words to give you comfort…my heart aches for you guys. What you’re all going through — Owen especially — just makes everything else pale in comparison. You make me remember not to get so bent out of shape about the silly, petty stuff in life and to be grateful. Love you, friend.