Monday, September 1, 2014

if i am being honest.

reese woke up with the crud yesterday morning. by 4am this morning, she had a fever. 101.1 and then 100. and then after i took a shower to get ready to go to the hospital, it was 99.

but i volunteered to go. i got my hospital comfy clothes on. i put on my green sweatshirt that reese always says "oooh i wanna cuddle dat shirt!" and off we went.  i knew that if we didn't just go then, we'd end up in the ER later so we talked about just getting it over with and finishing the rest of our day.

there is something so familiar about this routine. something comforting. we didn't go downtown because there was no risk of having to stay the night. we just went to legacy (the children's satellite hospital up north). but we dont know people there. they don't know reese. i am just another mom who comes in, but still it feels comforting to be there.

i told a friend last night that "i am caught between a state of happy and lost". for so long my identity has been the mother of reese, the child with a brain tumor. as reese's hair grows in, fewer people stare.  the questions are becoming less and less... and all of that comes with great relief to me. as well as paralyzing fear of change. what i once called my new normal became so normal - that i am in the same cycle that i was at the beginning, as far as adjusting.

this cycle is different because, for now, its not surrounded by gut wrenching fear. its not wrapped in tears of sadness and fear of loss of a child. its just... a change.

i want to be clear, this change is more than welcome. but, as i am always trying to be honest, i am simply stating that it's hard.

i miss the people. i miss talking to the doctors and laughing w nurses. i miss running into oncology mom friends. it is a different kind of connection than i get from most people and its that that i miss, at times. i miss the routine i had with just reese. her sleeping on me in the bed, uncomfortably, of course, but it was what we did. we lived there. weeks at a time in some instances.

when you go down to the oncology floor, for the first time, there is a binder. a social worker/oncology liaison sort of walks you through things, but in this binder there's a part about the after treatment. it explains that you will likely feel this way and even at the beginning, i knew they were right. originally, leaving ICU and going to the floor was hard. i was elated that reese felt well enough to do that, but longed for those people who cared about her so deeply that first month. then i moved on to the oncology family that grew each chemo inpatient. so many people whose jobs are to save my child - and yet don't make it feel like a job at all.

each new step towards health is one more step away from that normal. after reese has her MRI on september 15th, we are possibly one step closer to talking about port removal. which is a very big step, to me. you don't go in monthly anymore for port flushes. you don't go in for fevers because, at that point, you are now "normal enough" to just go to your regular doctor. the fear that something implanted in your body thats infected - is gone.

you trust strangers with your whole heart. and soon, they are no longer strangers. the same goes, i suppose, for my words on this page. strangers came to lift me up - and then one day, they were not strangers anymore.

september is childhood cancer awareness month. i am aware. you are all aware. there is nothing more in this world that i would want than to never look back. to never be in the place we were almost 2 years ago... 1 year ago... i want every day to be better than the one before. but we were there - and so many are. every day 42-46 more children are diagnosed. every single day.

none of those people know that one day they will miss the comfort of the lull of beeps from an IV pole. the beeps symbolizing that something is in your child's body is killing bad cells. that you're actively doing something. the beeps that alert nurses that chemo is done can lift a heavy heart with hope. it is hard to be off treatment and wonder. that part of the change is the worst.

but i am happy to be "amanda, ya know, that mom with the 5 girls". not the mom whose daughter has a brain tumor. for now, its nice to feel just like everyone else.

our daily routine has been filled with drop offs, laundry, the gym, cleaning, pick ups, cooking... rarely now is there "doctor".

but sometimes, when there is the option on which parent has to go back to that other normal. the one with ports and blood and hospital rooms and IV pole beeps...

...i volunteer.

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  1. Gosh, I just have to say, 'you are an amazing woman!'. All of your blogs are filled with beauty, integrity, hope and light~this latest is no different. You offer, in your honesty, an invitation to others to be 'real' - and as a result there is healing and comfort and peace! Amanda, you have sown many beautiful seeds of 'life and love' on this gut-wrenching journey you and your family have been on. Well done dear one! Though we have never met, my life has been profoundly affected by you and your family. Thank you.

  2. Yes. I get it. Even though things aren't going to get better for us from a brain tumor standpoint, I realize that I'm also holding onto the anger and hatred of my divorce like a security blanket. It distracts me and comforts me, and I draw strength from my mother's need to see that I'm going to be strong and independent and okay, and that I'm going to fight for what's right. But when the fight is over, and I'm just another divorced mom raising my kids by myself, and my mom's not here to give me a pep talk, I'll miss it. When my best friend of 24 years doesn't care whether I live or die, I'll miss being despised by him. It's strange how you can miss pain and negativity, once you've gotten used to it.

  3. I adore the honesty in this post. I think it's easy to think of how you would feel if the situation happened to you but not enough people talk about what it's really like. You're a brave woman and Mom! How lucky those girls are to have you!

  4. I GET this. More than anything I've read in a long time, I can relate to this. You've put into words what I have struggled to reconcile in my own mind. My daughter was diagnosed with leukemia at 26mos and turns 3 next week. She has finished frontline treatment and is 6 weeks into maintenance. Although she has another year and a half of maintenance (daily oral chemo, LPs with chemo every 3mos, IV chemo and steroids every 3mos). As I typed that, it sounds worse than it feels...compared to frontline, this is like a walk in the park. But I find myself feeling anxious and dare I say...missing our nurses, doctors and clinic/hospital routines. I know these feelings will be magnified when she goes off treatment and I am conflicted because this is what we hoped for, prayed for, bargained with my own life for (even though I know it doesn't work that way, it didn't stop my pleas)...and yet, I miss our routine. I miss knowing that her amazing team was keeping such close watch of her...making sure that she looked okay, wasn't showing any irregular symptoms, that I didn't screw anything up...I miss that security. Thank you for writing this and for sharing your story, this Mama is so very grateful for your words.

  5. Amazing! You write just what I feel. It is a weird place to be...missing the oncology floor, but I do. In April we will "finish" treatment. It is so weird to be so excited, but so scared about the same thing.