Tuesday, July 29, 2014

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)


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Thursday, July 24, 2014

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)



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Monday, July 21, 2014

refreshed. destin 2014.

while we were on vacation, i kept making mental notes of things that i wanted to mention later. things i wanted to remember. but as the week progressed, i realized i didnt even know how i could type the way i feel about this past week. it was just amazing.

sometimes you can drop a cup and see a crack. it doesnt look to have gone all the way through, and its your favorite cup, so you put it back into the cabinet to use later. 

but then when you go to use that cup… it leaks. it is broken and you didn't know. but now that you know, you can fix it. 

that is how we felt this week in destin. about our time with lighthouse family retreats

last summer, i watched another family we love go on the same type of vacation, with some of the same people. it looked like fun. several months ago, she mentioned it to me directly and i decided to find out more information. i wasn't sure how much we would enjoy the "scheduled" week. would i have to talk about feelings? did i want to talk about God? spend my week with people i didn't know?

yes. why, yes i did. 

i told jackie about the trip. this was our way to meet. for our halloween 2012 brain tumor twin and reese to meet. for us to finally connect in real life. we worked out going on the same trip, we planned, we waited for that first hug. 

we left on sunday night at 9:30pm. we turned on frozen and hit the road, ready to get to the beach. we stopped in kilgore at about midnight, and then they all slept after that. at about 2:30am, i swapped with EJ and let him sleep for a bit. we swapped back a while later and got gas in louisiana (where my kids keep calling "that place with all the mosquitos!!")  then stopped for breakfast in magee, MS (where we left foxy, but don't worry, ebay is bringing him back lol).

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after that, i don't remember where we stopped in alabama - but i do remember thinking "almost there!!" about 100 times once we hit florida. that is not true, however. lol 

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once we hit destin, we had to get through the traffic to get to sandestin and the tops'l resort. we stopped for mexican (lol i mean, sort of mexican. it ain't no texas) for lunch and then drove around for a while until it was time for check in. 

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within minutes of getting out of the car, i knew that the week would be special. we were introduced to a few of our "family partners", but at this point, i did not realize how impacted we would be by these amazing volunteers. 

we have a hilarious photo from our first 10 mins there, reese wanted no part in it, sawyer just was bitten by a lizard and is crying, the other kids are like "wtf is going on?" and EJ and i are visibly laughing with faces of "yep. this is us." its perfect.

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we went to our condo where we were greeted with more smiling faces who helped EJ get everything out of the car and upstairs. dinner was at 6pm (a luau) and our official "welcome" at 7pm. so we got ready and went to that. when we got to dinner, i realized how much help our family partners would be. i did not ever have to eat while holding a baby. i didnt have to take 2 bites and then run off to get something for a kid. i did not even have to get the girls' food. we had 3 adults and about a thousand teen girls assigned to our family and my kids were.in.love. we went to our room that night exhausted driving, but filled with excitement for the week to come. 

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tuesday morning, it was storming - they brought us breakfast, in room, and then stayed with the kids for "flip flop", while EJ and i headed to one of the houses in the resort for "common ground". i dont know how to explain to you how wonderful it is to feel at such ease with a group of people to leave your kids with them. i wasn't worried. they weren't sad when we left. the games were already out, being played. 

common ground was immediately comfortable. i enjoy group chat things like that, though. i was worried that EJ would hate it. i thought he would think it was corny and would not want to be there. but we just started with stories. we listened as we went around the room listening to the "how we got here". a few leukemia parents, bone cancer, sarcoma(s), brain tumors… a little more than a baker's dozen of us. as well as our amazing group leaders.  i cried day one. hearing stories of misdiagnosis. of pain. of suffering. things that hit my heart like a sword. but i felt so… validated, when we left that day. so many people who feel the same as i do. 

next was lunch, then the beach, since it stopped raining. it was still cloudy with stormy seas. i only brought my point and shoot camera out, in case it did rain. the girls ran into the ocean, were tossed around by tide, and then they would do it all over again. EJ took them in one by one, holding on to them, and showed them how fun it is to just let the salt water take over and ride the waves.

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we prayed for no rain that evening. it was our beach picnic with our new family and friends. the weather turned out gorgeous. we got down to the beach to a spread of chairs and food. followed by shrieks and giggles when reese saw her new friends. miller and her new bff dug sand holes, sawyer and aidan ran around with friends their age. corbin was held (as she was all week), but 100 people and smiled and cuddled the whole time. EJ talked to other dads and slowly i began to see how we were meant to be there. 

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breakfast the rest of the week was outside, followed by a few songs. sawyer would run up to the front while the worship leader played his guitar. we'd leave the kids, after breakfast, to go to flip flop time. they'd make crafts, go swimming, run around with friends. 2 hours of fun without parents. then we'd meet back up for lunch.

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we would head to common ground. we had the first 2 days filled for stories. when it was my turn, my mind raced, making sure i remembered everything (i didn't). making sure i didnt cry (i did). then jackie told grayson's story and i cried all over again. day 3 we talked about marriage. and how men and women are different, in general, when it comes to a family crisis, like a sick child. a lot of the husbands spoke up and i think it was nice for us both to see how "normal" the feelings we had were. things like a child with a tumor or cancer, etc can bring a family together tighter than ever before. but, the divorce rate, before you get to that place of togetherness, is very high. no one wants to be in that statistic, but husband and wives grieve the "old normal" differently and adjust at different rates. a lot of times, the dads are at work while the moms do the chemo - and it can be hard. but its so very normal - and hearing everyone speak up about the challenges just made us give each other that wink of "we got this".

day 4, we talked about faith. we listened to the story of an amazing mother who lost her son and her days of strong faith, as well as those where it feels as if there's no point. most of us never blamed God. never asked why. we just had to believe there was a reason for it all - even if, during a lot of those darker days, it seemed impossible to believe. 

wednesday afternoon, all of the moms went into town to a salon and got a mani or pedi and chatted like friends who had known each other for years. then wednesday night, the family partners came to our condo to watch the kids for about 4 hours while EJ and i went OUT! we went to dinner with the group and then had hours after to spend how we wanted. we went, then, with jackie and her husband, to a local spot and just "hung out". ya know. like normal people do ;) while we were gone, the kids went to an "unbirthday" party - pizza, treats, crafts, games… they had so much fun. when we got home, they had diapers changed, PJs on, and everyone was still full of smiles and love. 

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thursday, after breakfast and common ground/flip flop was a "free day". we went to seaside, fl. its adorable. we, obviously, for those who have been there, at at frostbites. then we walked around and shopped a bit. we ordered amazing pizza for dinner and picked it up to take home. we filled up on deliciousness and then i got the girls ready for the beach. i wanted to get photos of them one night. actual photos. our friends met us down there. :) then more friends came. the husbands and kids made sandcastles. then we stayed up late(r than usual) to use our flashlights to look for crabs. really the whole day was a dream. 

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but i should state here that, if there was still a time for dinner with the rest of the group, that would have been okay, too. i really enjoyed talking to everyone. not just the people who came to LFR as a guest, but the volunteers. so many stories… so much love. not one time in the week did i wish that we had more time "alone". we had every single afternoon, until dinner, to do whatever we wanted, but each time, i thought of new people i wanted to talk to the next time we all got together. new things i wanted to ask someone. a hug i wanted to give. EJ said one time during the week that he would even have wanted another "common ground" adult time during the day. and while there are not enough hours in the day for all of that time, its nice to feel it. to feel that need. that want. 

friday came all too soon. i got aidan and sawyer up extra early to go down and collect some seashells off of the beach. the light was magical.

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aidan sang 2 frozen songs. 
sawyer sang 2 "princess and the popstar" songs. 
miller joined them all. 
reese only joined them for a min before she saw EJ and wanted him, but she sure did look cute in her costume. 
corbin just floated around enjoying all the cuddles. 

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kids danced, kids sang, everyone laughed and clapped. we had an ice cream party, quickly, before the last storm rolled in. we got to our room minutes before that night's downpour. 

the next morning was filled with tears from our "see ya laters". our new family friends came over to help us pack the car and i ran over to the main house to make sure i didnt miss saying goodbye to anyone. i cried. i hugged people with love of a family. i wrote notes to let people know how much they meant to me this week. and yet, that won't ever seem like enough. 

some things said are very true: we were all meant to be together on that trip. to have the family partners we did. to have the group leaders that we did. to hear the stories we heard. they wanted us to relax and we so did. 

to hear people's compliments brought tears to my eyes. how loving our girls were to each other when we werent around. how laid back they thought we were. how they enjoyed spending time with our family. the feeling was obviously mutual, but its nice to hear, sometimes, that we are doing a good job as parents. 

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in the future, we cannot wait to take our family to LFR as a family partner - to be the family that serves another family who just needs to relax and have fun without thinking about doctors. i want to be the one to take that baby and cuddle it. to do crafts with their kids. i want my girls to be the ones making the bald kid squeal and giggle every time they come by. we can't wait. until then, all i can do is share this link with you to donate so more families can go on these trips. so more families can feel the lasting effects of love, friendship, and God. 

DONATE HERE. if you click the "in honor of" button, you can say reese sent you :) you can also click around to read more about these wonderful people. people pay to serve these families. they raise money because they want to be there. amazing. 

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we are your favorite cup. a fixed crack that we didn't know we had. or didn't know was as deep as we thought. sometimes its hard to be strong all of the time. 

"i don't know how you do it". neither do we. 

but we do - and now we feel stronger than ever. 

IG: punkfictionv4
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