Guest Blog - Amanda Skelte: Blog writer for "This Year's Love Will Last"

I know so much about Amanda, and her life with her crazy kids, including Reese.  Reese, just like Thea, was diagnosed with a brain tumor, and the Skeltes' lives were turned upside down.  I have followed their journey and known how every step felt.  I have cried and laughed and been angry with them.  But, I've never been able to reach out and hug her.  We have never met, in person.  But, this crazy bond you have is undeniable.  And it is awful that this horrible disease is what brings some people closer, yet drives others apart.  Amanda was blogging and chronicling her life, long before her daughter was diagnosed with a brain tumor.  Her gift of putting into words the feelings and thoughts of all of us on the journey, will leave you speechless.  And it will make you want to reach out and hug her, too.  

This blog is about school.  Millions of kids are a few weeks into a new school year.  What is it like?  We send then off on the bus with some worries about who will be in their class and will their teacher be nice.  But kids like Resse and Thea (and thousands of others) have very different experiences.  And, their parents have much bigger concerns.  Will the nurse call me, today?  Will she have a meltdown in the middle of class?  Will the kids be accepting and understanding? 

This blog was originally posted on http://www.thisyearslovewilllast.com.  Amanda has agreed to share, here, to help raise awareness that kids get cancer, too, and the change in your life, goes far beyond just doctor appointments and chemo.

 

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.




Jeff Danze
Jeff Danze

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