Monday, April 14, 2014

One Moment at a Time

Yes being a parent is hard. As soon as you learn you are going to be a parent, You start to love harder and more deeply for another human being than you ever imagined- you also FEEL deeper for this person that you are both in love with and responsible for. I literally feel pain when I hear my daughter cry out. I feel pain for her when I see her telling doctors and nurses to leave her alone. When she cries the words "that's enough!!" during an exam, want to scream "that's enough!" out loud with her. But I can't. I must hold my head up high, bite my lip and draw back the tears. 
 All of this "strength" I must have for her is wearing thin at times. I feel the joy being sucked out of my life when I see her flinch. I struggle to hold in my fear and keep my anger at our situation from exploding and projecting onto others. I don't have time to care for myself like I like to. Recently Ive felt so unhealthy- mentally & physically as Ania's health has taken priority. No one ever really tells you what it's like to suffer through the forced strength you must carry during your child's cancer. There is no other choice. We "warrior parents" may appear strong, capable and resilient but sometimes we crack and lose sight of who we are. But that forced strength is powerful- and it pulls us along. I really believe faith is what makes up this strength. 

With a cancer diagnosis and chemotherapy treatment, I naively expected Doctors and nurses to just take care of everything and for me to just be there to comfort her. It's not that simple. 

I have to give her medications. Lots of them to keep her immunity up. Ania hates taking medicine. If fact she sometimes vomits when I try to give her all the prescribed medications she has to take now that she is on chemotherapy. Sometimes she cries for me to leave her alone and says I am hurting her. Hearing that, just tortures my soul. I know she is not really in pain but I feel horrible. I watched as she screamed for the nurses to leave her alone while try to find her port hookup unsuccefully 3 nights ago in the ER for her elevated fever. There is still no explanation for the fever she is experiencing. Blood labs appear normal. Sometimes the fever disappears for a few hours and then just comes back with a vengeance up to 103 degrees. Her personality changes and she is not happy at all. My poor girl is robbed of her sparkle and joy. And so am I. 
Today's 2nd doctor appointment...checking to make sure her eye socket is healing properly.

Just when I feel like I want to bury myself in my bed and hibernate, her fever will break and she will smile again. Today after 2 challenging doctor appointments, she was smiling again. It was 5pm and she has a ballet class on Tuesdays at 5:30pm that she goes to when we can.  She brought up her dance class and said she wanted to go. She was so excited and I knew it was a fleeting moment so we quickly put on her leotard and got to class a few minutes late. She hasn't been to class in weeks. It was not evident! She jumped right in and didn't miss a step! As we walked to the car after class, she said to me "Mommy, I love you" 
That's just what I needed. Thank you Ania for that little gift of words.  

However, as soon as we got home, her demeanor changed. Her fever jumped back to 102 and medicine time approached. I was back to enemy #1 as i tried to coax her to take her medicine and take a bath. Sigh...

You know the saying "One Day at a Time"..... Well, my life is "One Moment at a Time." I'll take the good and revel in it while it's around. That will hopefully keep me charged up with enough positive energy and faith to get through the bad. 

God Bless,

Erica

4 comments:

  1. It has to be next to impossible to be upbeat and positive all the time, especially when your darling daughter is having a hard time. I just can't even imagine how hard it has to be for you, and I'm thinking you've probably lost count of the times you've prayed to switch places with Ania so she won't be in any more pain. Tonight, I'll say some extra prayers for you, and I'm sure tomorrow will be a better day. God bless all of you.

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  2. I am praying that you continue to find the strength to be what Ania needs right now. Someone capable of changing personnas at a moments notice depending on what she needs from you. Only you can know the difficulty in this struggle . I hope that soon the good moments will begin to outnumber the bad. Just hold tight to your faith in the Lord. May God bless you and your wonderful family.

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  3. When I read your posts, Erica, I feel the poverty of language. There are no words to make this all better. So once again I say "You are in my prayers."

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  4. Stay strong, you can do it. You can do it. You can do it...

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