We have a running joke at our house in that I live to go on vacation and Tony lives to KEEP me from going on vacation. It’s not quite that dramatic lol but close! I grew up traveling and he did not so for me it’s in my blood! For him, he often is the practical one who thinks about all the things we aren’t getting done. Again it becomes a balance!
So this year, I was ‘banned’ from planning a vacation. Probably because A: We went to Mexico last year, and Florida, and this year I spent a weekend in Vegas. SOO we compromised and decided on St. Louis. Its close, cheaper, etc 🙂
First of all it was HOT, I mean like 100degrees HOT, however we saw some super cool stuff! Being the crazy person I am, I found that (insert DUH here) the route to St. Louis is Route 66! SWEET!
We stopped and drove over the original brick road, we saw some super cool rabbits, both the car and the animal kind, we visited some Indian burial grounds, and walked up a VERY large mound.
Most importantly we laughed! This to me is always the hallmark of a great vacation is did we laugh! And we did!! The kids laughed at my coaster face (just ask them I have the worst), we laughed while we played games and we laughed as Nicole figured out the escape room!
I can promise you I am already planning for next years trip (and the short overnight one we are doing in Downtown Chicago!) But the most important thing is we laughed!
The next time you are worried or struggling take a step back. You don’t have to go someplace huge, it can be to Starved Rock or even the local forest preserve. But take a day and get away! I promise you won’t regret it!!
How many times have we wanted something to be a really big deal? I know I am a big deal person! I want to make EVERYTHING a big deal, my family does NOT follow in this! Most of the time I don’t care and I make it big anyway! Birthdays? Go on for a MONTH! When Jon turned 16 we did 16 days of turning 16 and every morning he got a new little gift.
Sometimes stuff is just meant to be well just there. It’s not meant to be a big deal, the world has continued on while we have struggled or fought or something and beyond our immediate family most of the time the rest of the world isn’t aware of our struggles. It’s just anti-climatic!
I think sometimes living with a child with a chronic illness you end up making everything a big deal and often times that’s because it has to be. Weird rash, what is happening now, strange mark, we watch it closely. Everything becomes a big deal simply because you don’t know what shouldn’t be a big deal.
We try very hard to play things down, when in my head I am totally freaking out. Funny story Nic shaved an area on her body that when shaved often causes irritation. She showed me the ‘rash’ and I told her it was from shaving and then smiled because we’ve all been there.
I think there are times when we want the world to make a deal out of something. We want them to SEE that something has happened and what we fail to realize is that for them nothing happened, it’s just a normal day…
We are super blessed that all of our friends are super familiar with what Nicole has and are always very accommodating when we have to change plans or direction. And since our family lives so far away they don’t get to interact with us as much.
This weekend we traveled to Michigan where we spent time with family and this was the first time that family had really been exposed to what is going on with Nic. It made me realize that there has to be more awareness about people with chronic illnesses and that awareness has to start young!
Sometimes I just want to say ‘no she’s not super tired’ and ‘yes she’s still sleeping’ (even tho its 1 in the afternoon) This isn’t by choice, she isn’t lazy and has decided to stay in bed, she’s bone tired exhausted. Think about your most tired moment, maybe you were up for 12 hours with a sick child or even 24 hours. Now imaging that times 10 and EVERY DAY! There is no magic cure, there is no pill that will make her better and some days are worse than others.
So today I am going to be thankful that I have friends who understand and family who tries! But how do we share with people what this disease is and looks like? How do we make people understand that this isn’t ‘normal teenage tired’ this is so tired I can’t wake her! (just let that sink in – I physically cannot wake her up!!)
So I’ll leave you with that, but I am going to continue to educate!
On a Facebook group I am a part of a mom reposted this blog
I have to say that it was not an easy read. Mainly because this is our story. Almost to a T! We still struggle with feeding Nicole, she still has issues that I am not sure we’ve fully discovered yet. However, it is amazing how God makes these kids. The one thing that struck me with the child in the blog is how resilient he is!
We tease Nicole all the time that God mad her for us. That He created her to be exactly who she is and then gave her to us. I firmly believe she was supposed to be ours. The way we manage her is such that its less about her illness and more about her.
We don’t focus on what she can’t do but on what she can, and we take every detail in stride. We don’t go crazy over little things and trust me if we did I’d be a total and complete mess. I am already a total and complete mess with that child I don’t need any help LOL
Nicole isn’t going to magically get better, she isn’t going to outgrow her diseases so we have to learn to live within the boundaries we have been given. What I am blown away by is how God has put people and animals in our path that have the same boundaries. She has a horse who is afraid of the farrier (horseshoe guy) and I don’t mean like a little afraid I mean the man walks into the barn and Dixie would run out an open door given any chance! She has a dog who is afraid of her own shadow and LITERALLY any noise she doesn’t understand.
Nicole (and Dixie and Alexa) all work within the boundaries of how they were created and that is SO OK! Because God made them this way and then in His Infinite wisdom he gave them to us!!
I was thinking today about how often we judge people by how they look. I did this the other day and I am not proud! Nic and I ran into Jewel and a guy in a pick up truck was pulling out of a handicap spot. He had firefighter plates and looked to be a pretty young guy so I made a not so nice comment about why he was parked there.
My ever intelligent (knows way more than me) 13yo proceeds to say “well mom maybe he has an invisible illness like me” OR “maybe he was just turning around” Ok smarty pants point taken!!
This got me thinking about how often we judge people by how they look. Tattoos – well they must be a dumb, Work boots and work clothes – they didn’t go to college.
I know that our gut reactions are often just that a gut reaction- however what we do with that reaction is what sets us apart. Think about it, maybe that person covered in tattoos is the worship leader in a church (Ours is!!) the guy that’s got the work clothes on and is dirty, maybe he has a college degree but he prefers to work outside!
The child who is standing alone, they aren’t being snobbish maybe they don’t deal well with crowds and need a few minutes to gather the strength to interact!
When I was younger people told me they thought I was ‘stuckup’ (yes that’s a total 80’s term) because I didn’t talk to people. It wasn’t because I thought I was better, it was simply because I wasn’t comfortable talking to everyone. While I am way better at it, I am still more comfortable with people I know than total strangers!
So take a moment, that person who looks different, is standing back, and isn’t interacting smile at them. Say HI! Ask a question about what they do! You might be super surprised by the answer
Tony asked me yesterday if I ever thought we’d be here, watching our child walk across the stage for 8th grade promotion. I told him that I don’t really think that way. I don’t wonder if we’ll get to a certain point with any of the kids, it just sort of happens.
With Nicole every step has been a struggle, moving from grade to grade and teacher to teacher has presented new issues to handle and overcome. However, with Nicole I never doubt she’ll overcome those. It’s almost a foregone conclusion that she’ll get there and we’ll see her take the next step.
Last night I was reminded that these moments go very fast and that in the next blink we’ll be watching her graduation from High School
When her brother reached this point I told him and his friend that these next 4 years will go so fast they won’t believe it. On Graduation Jake told me that when I told him him that he didn’t believe me, he said now he does because it was the fastest 4 years of his life.
These next 4 years are not going to be easy, they won’t be without missteps and struggles, however these next 4 years will be the absolute best of her life.
I do not know what the next 4 years will hold, but what I do know is that it will be full of surprises and laughter.
So here’s the next 4 years!
When we think of warriors we think about the man or woman going into battle dressed with armor, weapons and other items needed for battle. However warriors often come in way more shapes and sizes!
Warriors are the ones cleaning up their child after they throw up all over themselves and their car seats a day after a really tough round of chemo. Warriors are up at 2am because the blood sugar monitor is low (or high) or just being weird and they still have to get up the next day to go to work. They are the ones who quietly explain to the child that yes they can still go to school the next day even though you are pretty sure they won’t.
Warriors carry wipes, towels, barf bags, snacks, diet coke, chicken, orange juice, starburst and toys. They smile even when they want to cry, they sing even when they want to scream and laugh when they want to sleep.
Warriors are big and small and sometimes they even have 4 legs. They can be tall or short, brown or black or white or spotted but there is no doubt that if you have a child then you are a warrior!!
She has an old soul.. this is something I hear quite a bit about Nicole. Almost like she’s been here for so much longer than her short 14 years. I see it in the way she approaches just about everything. She does so much more as a 40yo than a 14yo. She is wise beyond her years and so often gets it more right than adults!
She had to do 2 power points in the last few days. One for science and one for English. The one for science was on poaching, a topic that she is very passionate about. (Which shouldn’t surprise anyone since she loves animals). She put together a very powerful power point with some very graphic images. For her, these images weren’t shocking in what they showed but in what they meant! Animals being hurt for stuff that she felt was simply not needed! I also think she’s in it for the shock factor – and she is my kid!
The one she did for English was on fear and wow did she find some great imagery on that! She really took the book “The Lord of the Flies” and made it a powerful message about what the book talked about.
Of course both of these were done within days of each other so I am waiting on the call from her social worker to ask if they should be worried! (Not really her social worker loves her and gets her)
It just made me realize that this child is bound for greatness. God created her for something that I don’t think any of us really know. She has gifts that go beyond what I even thought possible. She can see, sense and hear things that are beyond what I even understand. What I do know is that God gave her to us because He knew we wouldn’t try to put a basket over the light that she has.
I watch other families brag about their dancers, singers, volleyball players, track stars, business owners and I am over here thinking wow, my kid sees a world that most people don’t even believe exist!
So while I don’t post on facebook or social media about what my kid can do, I know that God made her for something that is way beyond my understanding and I am simply here to guide her. He has the rest well in hand.
Life is constant set of lessons to be learned by all of us. Nicole had such a life lesson this week. She has a friend who she feels is being mistreated by her parents. Not physically but emotionally. I want to stress that I have no facts about this only what has been told to me by my 13yo.
Her and a mutual friend talked to her mutual friends mom (not the mom of the girl in trouble) and the decision was made to reach out to the office at school. The girls then spoke with a teacher and social worker. The social worker is someone who Nicole has been seeing through out her years at school so someone she trusts.
They let the school know that this girl was thinking of killing her self and was hurting. The girl is taking some time to get help and even thanked Nicole and her friend for standing up for her. Having been in this situation before I know how hard it is to stand up and say you think something is wrong. Having had a friend take his own life you know the lifetime effects this can have on families
I am proud of the girls for standing up and saying something! This isn’t easy for anyone. I hope that Nicole knows that if she can’t talk to me she can talk to her friends and I know that those friends are going to make sure she’s OK!
Parents, think about the way you speak to your children! We don’t often realize that our words hurt alot worse than we realize and if we attack our child’s character in a moment of anger apologize! I told Nicole that maybe the mom didn’t realize what was being said and possibly she was just angry. I try really hard to apologize to my kids when I do this! I want them to know that I am only human and when I get angry heaven only knows what will come out of my mouth!!
Parents, we aren’t perfect and we need to stop pretending we are or should be! We make mistakes, lots of them! When we do we need to own up just like we would at work or anywhere else.
I am not saying that we shouldn’t parent our children! We need to correct them and call them on their stuff! (Yesterday I yelled at Nicole for saying “I Know” to her trainer) umm you don’t know and she does, hence why we pay her so much money each month for you to ride!!
Hug your kiddos tonight and have a conversation with them about what’s going on in their lives AND in their friends!