holding hands.

this week, reese had her port flushed. i told her monday night night we were going to go to the doctor today and she said "no port…" and held that small scarred area on her chest.

i didn't bring a stroller. she walked the whole way. with aidan by her side, the only parts she didnt walk were up and down the long ramped hallway. and then a few breaks to catch her breath from laughing so hard as she purposefully ran into aidan's legs. "crash!!!" she'd say.

at some points, she'd yell for aidan to push her walker and she'd walk with me. side by side. hand in hand. but it wasn't the weird hand holding. it wasn't me with my arm crooked, trying to balance her. my arm was relaxed and we were just holding hands like mothers and children do.

i've thought about this before. i've been walking with miller or another child and thought "will i do this with reese ever again? will we just hold hands and walk together normally?"

yes. 

when we left, aidan said "wow, everyone knows reese." and thats partly true. reese was in a great mood - smiling, laughing w people, giving kisses and racing down the hall. we saw nurses and friends. we saw our main ICU dr from the beginning - as well as when reese was septic - on our way out. i always wonder what people are thinking. he was proud, you could tell. reese was laughing, trying to chase aidan and he turned back to watch, with a smile on his face. he is the best - always forthright and honest with us. so seeing him proud made me feel the same.

we went to get SMC and then on to PT/OT. then dance. then made dinner and met with neighbors for "national night out". it was a good day.

we bring reese's walker everywhere now. i want her to walk into places. and even walk while AT places. she walked through the store with us the other day. i got a regular cart (instead of a big one) and so there was simply no space. sorry reese, walk. and she did.

august has started up and the summer is winding down. we've had a surprisingly cool summer, so playing outside is a must. aidan went to the lake with my parents from thursday through sunday. sawyer had a friend's bday party on saturday. we're planning things like backpacks and lunches. getting our fall dance schedule solidified.

im ready for aug 25 to come and me be SO SUPER HYPED about making lunches until mid september when im like "eat at school today…". im ready to send off 4 kids in one day and go to the gym with my one snuggly baby.

i am ready to wave goodbye in the morning and see them running towards us in the afternoon. im ready for miller to see her friends again and tell me illogical hilarious stories of her day.

im ready to hold reese's hand and walk her into school.

"you come back?" she always asks when we talk about school starting again.

i always come back. every day i come back to hold her hand.

reminders.

last week was a reminder.

from God. 

sometimes, things are good. really good. but last week was a small reminder that things can change in an instant.

reese, the past few days, is back to walking again. walking like this. i spent last week crying again physical set backs.

but today i showed her off on instagram… facebook… showed her walking without her walker.

turns out we didnt set her back in PT that far. just a week, it seems. (IG: punkfictionv4)

this life.

talking to a friend today, after being neurotic, i told her "this life is hard, sometimes."

she reminded me that its hard most of the time.

i forget that our life is different, usually. then some days it hits me.

last night, ej took miller and reese home from the dance studio so i could take aidan and sawyer (and corbs came) to shoot an ad for some back to school minis that i am doing. i was driving home through the neighborhood and saw a guy with his daughter on a bike and asked myself "oh i wonder if that's ej and reese?"

what? 

i don't even know why i would think that. of course its not.

a few weeks ago, we let reese "walk", by herself, incorrectly for a couple of weeks. it was a stupid thing to do, but i was so proud. i took video, i shared it with some friends. but all it did was send us backward with PT. i told ej, "no, we have to boot her more". what was happening was that she was compensating her bad leg with her good leg. trying to balance. and all that did was make the good leg not do what it was supposed to do. so we booted it again (AFO boot) and went on vaca. she didnt have much time for walking on vaca bc we had a stroller or whatever, all of the time. or people carried her around. we got home and i immediately booted.

then i took the boot off and her knee was weak again. this is our fault. she learned the wrong way, was corrected by the boot, relied on the boot, now has to learn, again, how to do it correctly. she is shaky. like she is re-learning.

after talking to (and harassing. im sorry. lol) some friends who are PTs/OTs, they assured me its all normal.

but for 24 hours, i have barely eaten. barely slept. cried a good amount of the day. mainly bc i thought "omg what if it was the tumor..."

i only think things like that because of her "bad arm" - and let me say, "bad arm" is doing so so good. she opens her hand so well and was so proud to show her OT that on tuesday afternoon. and the OT was proud of her as well.

when i am sad and distracted, i literally do nothing all day. there are 3 loads of clean clothes sitting in the living room because i just... can't. i have things to do. editing to do. i need to clean. go to the store. and i just couldn't.

i sat on my hands trying not to call the doctors who would inevitably ask me questions that i already knew had good answers: she feels fine, is acting fine (awesome, actually), doesn't hurt, eating great (probably too much lol), sleeping normal...

i want to feel like i did last week. like i did in destin. what's so nice about the week with lighthouse is that it gives me a "home base". it reminds me of the feelings of hope and faith. feelings i want to get back to when i am anxious. i am reminded that worrying does not one single thing to help our lives. not one. and im reminded that God loves us. and reese. and will protect her.

i have always been given the knowledge and instinct on when to push things. and i have been given signs of "now. now is the time." so i need to trust that God will continue to guide us.  we have been given people, doctors, friends, prayer warriors, in this life - that have helped us along the way.

i hear about little girls who were fine just a few weeks ago - who are now going on their "last vacation" before she is on hospice. i read things on pages and need to remind myself that that is not my child.

this life is hard, sometimes. and today is one of those days that i will pray for peace and drink some wine while reese and aidan are up cuddling and watching a movie in reese's room. normal things for normal sisters.

(and yes, foxy is now home. IG: punkfictionv4)

big steps.

literally.

i dont know we got the small metal walker out, but we did. i put some glitter pink washi on the bar and called it her "sparkle walker".

the next day, i brought it, on a whim, to target with us. its easily tossed into the front seat. she wanted it to come. that, alone, was huge. but then she said she wanted to walk into target.

and she did.

i had heard "i hate my pink walker" for so long. a very expensive piece of metal, taking up space in the dining room..

now, let me explain how this went. i got corbin into the basket of a cart and pushed that along as we ever slowly walked across the uneven ground. she yelled at cars that were coming. yet everyone patiently waited for her to pass, waving and giving a sweet smile as they drove by.

we got to the other side, she teetered back a bit, and i rescued her and tossed everything into the cart. i was beaming. just so proud of her.

i kept at it. she uses it around the house, sometimes. she walked into PT with it. its just wonderful. tonight she walked about 4 steps from standing in the middle of her room, to me. and she has also started using the pink walker again because of her new found confidence.

things, in general, are wonderful. there is reese in a good mood and then there's reese how she's been recently - which is awesome. not being sick, helps ;) but we truly spend all day laughing and making jokes and cuddling. we are kitty cats, we write hearts on our hands. we have fun. she is starting to act more "hi, im 4 years old." and less OMG OUTRAGE three'nager.

we have her last MRI while on chemo, tomorrow. and yes, then we have a meeting after that - so no waiting. i am not nervous. at least, right now. i dont know why, but i feel very at peace, mainly feeling as if she is going to rock it. tomorrow, i will feel less certain. but i'll be up at 5am, drink my coffee, feed corbin, pack them both up, and head down as confident as i can be. EJ is going to take A and S to school, then meet us. M is already at my parents' house since they didnt really want a 6am drop off ;)

at labs last week, i tried to get some pics of reese doing what she does. with the people she loves. miller came with us and was, surprisingly, great. reese walked the hall, gave cuddles and thumbs up, and gave some blood. all in a days work, i suppose. how so strange it will be for these to become less frequent. being ripped from a routine is miserable. i felt that way about "drop offs, gym, pick ups, dance" that i had before reese was dx. how strange that i feel even worse about going back to that this summer.



i feel the need to rush and make memories. different kinds of memories than i am used to. i just want to make sure i document how things go right now, at the hospital. people she sees, things she regularly does. i don't know, but its overwhelming. i want photos with doctors and nurses. we will be seeing them, all of the time, still. but eventually in a different type of setting, i suppose... or hope... or whatever. i am trying to plan next week's "end of chemo" in-patient. and that is tipping my scale.

reese had a hearing test today. meh. she has dropped off on her high frequency hearing. which is to be expected. and we're almost done, so...

i think she expected me to make a sad face or something, but i just said "oh ok. thank you!" and went on my way. all things considered, high frequency loss is pretty low on my freakout totem pole. she could be going deaf and we'd say "i guess we should all learn sign language" - because in the end, it just matters that she is here with us. and happy. so this was okay.


aidan woke up from a sleepover on saturday and her eye hurt. long story short, EJ was at the legacy children's ER that night - pink eye and a corneal abrasion. :( sweet girl. she was simply excited about "a bracelet like reese!" i kept her home today, from school, but at least she's not contagious anymore (we got the 8 hr meds). let me say, eye drops for 5 days, though, is no fun for a 7 year old.... or the eye drop giver. ::twitch::


we spent yesterday evening at the splash pad. after hearing that this week was going to be so cold, we had to get out and get some sun. they had so much fun just running around and eating dinner picnic style.


summer is coming. freedom is coming. i am hesitant and nervous... and excited. the countdown to reese's last chemo is about a week. i have to get my thoughts together. and pray that this it.

another new normal. after already getting used to this one.