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Showing posts with label therapy. Show all posts
Showing posts with label therapy. Show all posts

Wednesday, August 5, 2015

before school begins.

I have never walked this specific path before. I have taken kids to school on their first day of kindergarten and cried after drop off. I have been nervous for new adventures, but known in my heart they would love it. I have never had to navigate public school with a child who had special needs. Our time at Reese's last school was special bc the program was for children with disabilities. Now, that could mean in need of physical therapy, speech delayed, cognitively delayed, etc. Many types of needs and diagnoses could get you in to the program. Half of the day was inclusion into mainstream - and really, I thought the transition for me would be much easier than it is.

I am 3 weeks away from sending Reese into a classroom that is 100% mainstream. She is absolutely ready for this. She knows all of her letters, the sounds of letters, her numbers and how to add them. She is full of jokes and smiles, she can run around and play with her friends, and loves to be silly.

But here I am, writing an open letter, I suppose, to her teachers and friends. Friends that are yet too young to even read and teachers she may have in the immediate future, or years to come. And to all teachers and friends of those who have a new kid in class who is just has something extra special and different about them.

Be patient. It may take Reese an extra second to answer your question, but it's there. She just is too busy thinking about whether her answer is correct or not. Remind her that she does, in fact, know the answer so to just say it. Also, she may forget that same answer tomorrow, when you ask. She knows it, but just can't get to it as quickly. But man, oh man, she cannot wait to see your eyes light up when she gets the answers correct. If you don't understand something she says, try again later and you will. She has so much to say if you just wait for it.

Be safe. This is all overwhelming and new - just like it is for a lot of kindergartners, but for Reese, she doesn't really understand how new or different it is from previous years. School was a safe place for her. It was a place where all of her teachers are her best friends and her classmates are just like her. For her, kindergarten will be the same way, so please help her remember that it is, as always, the safest and best place to spend your day. Give a hug when she is sad, don't just give her the facts about me coming back at the end of the day. Help her up when she falls, instead of telling her to brush it off. Sometimes being a safety net is just as important to teaching those life lessons. She just wants a cuddle once in a while, but teaching her a lesson on getting out of your seat will break her spirit for a week. She is a rule follower and will never have her "name on the board" or "points taken away" or anything like that. She can't wait to help you, as soon as she trusts that you'll let her. That is what happens when kids spend a lot of time at the hospital, as they grow up - they have to learn to trust the people in the room are the ones that will keep her safe from harm.

Be kind. Reese's AFO boot is cheetah print. To all her classmates, "pretty cool, huh?" It helps her so her toe doesn't drop when she's trying to walk. She can't use her right hand that well, but "bad arm" is it's name and it does what it needs to do and learns more every day. Her front teeth are gone because some of her meds ruined them, but who wants to brush that many teeth anyway, right? ;) Reese's hair is short and awkward, sometimes, because this time last year, she was still basically bald. I knew she'd start kindergarten with a cute bob - and that is how it looks to be. She is just like YOU. She wants to play with you and make you laugh... even if she is the size of a 3 year old.

Be diligent. It takes Reese a few more mins to get things done in the bathroom. I will try to keep her in short dresses so that she doesn't have to deal with leggings often, but please keep an eye on how long she's been in there. It is possible that she's just trying to get her undies into the back of her leggings and "bad arm" is being a pain... maybe send a friend in to get her. She will have an aide on the playground, at first, to teach her the boundaries, but please try to remind her, in other locations, "step!" because she only has one eye to catch that drop. Eventually, she'll remember where all the steps are, but she just needs you to be her extra eye for a bit.

Be you. Reese cannot wait to get to know her new friends and teachers. Everything written up there, teachers already know and parents already try to teach their kids... but I still have to type it out before my emotions get the better of me. She loves so fiercely and I can't wait for her new school to get to know her like the last one did. I want to cry when she graduates kindergarten because I loved everyone so much. I want to miss her daily because she just loves school so much and cannot wait to go the next day. I would never tell someone how to do their job or be someone they are not, but it is important to help people know who Reese is, also. And she's just so many things that are worth waiting for.

The next few weeks will be for screeners, info meetings for GT and kindy, 504/IEP meetings for both S and R, back to school night, and more. Dentists appointments are made and they will have squeaky clean teeth. I have paid too much for new lunch boxes that my kids love, but that Reese can open easily. I need first day of school dresses, still, though, and that will be a task in itself. Reese moved into the pre-kindy class at church (by herself - she had been wanting to stay w Miller, each week) so that she is in a group of her peers and it has been fabulous "practice" being w kids that may be in her classes.

Her MRI results yesterday said "stable" except for a small debate over something like 1mm of possible growth that they don't even really call growth. All of that to say that we are status quo on chemo right now. We will re-work our schedule to going to chemo on monday afternoons between the end of the school day and 5:30 dance class. Once a month she will have to miss the day for an appointment downtown, but other than that, she's all yours, kindergarten. She doesn't have low counts, doesn't have hospital stays, usually. So, normal.

I wish that I could tell every teacher something special about each of my elementary aged children. I wish Aidan's teacher knew that she was sometimes too shy to be overly confident, but that she will knock your socks off with her brain. Sawyer's teacher needs to know how absolutely special it is to have such a unique kid around who wants to learn so badly, but just needs a bit of help along the way.

...and at any point in time, remember that they have, and truly need, each other. They are going to want to wave to each other, if not hug each other, in the hall if they pass on opposite lunch schedules. They are going to want to sit by each other in bus or car line. All 3 of the elementary aged Skelte girls are a team... a team with their littles, at home, who they'll talk about throughout the day or write about in their daily musings.

Next stop... kindergarten.


Tuesday, October 28, 2014

sounds of the in-between.

EJ and reese after bath1

"i need a hug."

she's never sad when she says it. she says it because she loves us. and wants a hug.

"mommy. i need you. i need a hug." she shakes her butt over to me and i gladly oblige.

"you fix my day? i fix all'body's day!" when she wants us to make her happy. or do something for her. or tell us how she made someone else's day better.

"stay in your cage! click!" as she pretends to lock me on the couch so she can be naughty.

"dont tell daaaaaddyyyyy..." and she giggles so squeakily away.

"i peed in the potty. so... CLAP!" lol.

"all'body love reesey." indeed they do.

everyday i spend 90% of my day thinking reese just has a pixie cut. and 10% of the time staring at her, wondering what i am missing.

...if i am missing something important.

i am caught between two lives. all of the time. back and forth. talking on boards to moms whose children have reese same tumor. talking to my friends whose children are perfectly healthy at school drop off. i cannot figure out where i am supposed to live.

so here i am. in between.

fully knowledgable of life's greatest fears coming to surface. two years ago, this week, i was a mom who had a sick kid. reese was taking antibiotics that i thought were making her throw up. i begged that she feel better soon. at first, her feeling randomly sick was an inconvenience - having to pick her up so soon after drop off at preschool. until finally i said "nevermind, we'll re-start school next semester"... but we never got to do that.

i am stuck in between seeing miller grow up and be the 2.5-3 year old that i didnt get from reese. i wonder how reese would have been had she not had her tumor. she wouldn't have been reese, so it doesn't matter, of course,  but its interesting to think about. it feels like a lifetime ago that aidan and sawyer were this age - and besides, that was before. back when brain tumors were sad things on other people's blogs. back when i cried for other people's children, but felt that safe distance of "not me" after i exited the browser.

its never you, right?

last night i had the weirdest thought. i was thinking about the years. just random years for some reason. 2005 when i met EJ... 2006 for aidan... la dee da going through the years... and got more recent...

2013 was good. 

i caught myself thinking it and then immediately tried to make myself retract. but it was already out there. why. why would i even say that? and honestly, its like i had forgotten everything. but i can think of so many amazing things that happened in 2013. we consistently watched reese excel beyond what so many people thought.  i spent overnights in the hospital with reese doing things that made us so close - even if chemo was involved.  i was pregnant. corbin came and filled a hole we didnt know was there. the perfect fit.

so much love wrapped over so much pain and fear.

but i guess the amnesia of it all set in a bit. the whole thing is scary, as its still so fresh. as we are still, and will always be, in between. the people who "get" both sides. and don't really have a bench to sit on. always standing around feeling a little bit more involved in each side. too many details and what ifs to keep the blinders on.

but i will gladly give those hugs. i will hurriedly say yes when she says she wants to rub my shoulders while im changing a baby diaper. she checks in while standing behind me with "that fix your day? you happy?" ill laugh at her jokes, ill smell her stinky feet, and ill pretend as if i dont know that she only wants a snack when she says "mommy? my belly hurt." i listen to her play w sawyer at bedtime, her room a mess with little people school buses and castles. i laugh as miller and reese run up to me while i am in another room, naked from the bottom down, with giggles of "look at our butts!" as they scamper off to another room to look for trouble.

almost 2 years later and i am proud of our family - of our strong kids. i am proud to be in the in-between with these 6 people.

this fall has been filled with festivals and dance events, costumes, and pumpkins. we have a busy day on friday - scare on the square and then trick or treating for the first year in this house.

it will be a halloween that we deserve. with reese walking door to door for candy she won't eat. laughing with her sisters down the sidewalk. and dancing on the street with friends who love her. every day is a battle between that 90/10 split, but each day i learn to trust my confident, but damaged heart and let God lead the way.

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