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.
