9/01/2015

Before the After (A Portrait of a Child Before Pediatric Cancer)



One of the MANY things that bothers me so much about Joey's cancer is that hardly anyone knew him before. Before the dreaded after.

Our family knew him, his preschool teachers knew him, and a few of my friends knew him.

But his life was just getting started before it came to the tragic end it did. Now people just know him as "Joey, the kindergartner with cancer." The bloated-from-steroids, goofy-hair-from chemo little boy who always carried Stripey Kitten and slept a lot in the nurse's office at school. Sweet but weak, with a sense of humor that would repeat itself frequently.



"Kathy's son who died." "Our brother who died." "That little kindergarten boy who died."

The thing about Joey was that he was so special. He was going to be so great in his life. I know every mom thinks that about her child, but there was something about Joey that just radiated uniqueness and joy. I'm going to try hard to explain it to you by telling you a few stories and introducing you to the Joey Before the After.

The Baby Joey

He was Baby A in my twin pregnancy, and he took this position seriously. He occupied more than his fair share of space in my already crowded uterus. So much so that we could never get a clear picture of Baby B, Slim. Once he vacated the premises, Slim finally found all the room he needed, stretched out, and waited three hours before he was forced to vacate as well.

As a baby, Joey was busy and active and always smiling. He was roly-poly and fat and played with toys like it was a paying job, a job at which he over-achieved. One of his brothers' favorite stories about his baby days is a story of when I was changing his diaper. I had his little legs up in the air to wipe his bottom, and out came some more poop, shooting across the room. Telling this story in a houseful of boys never gets old.



Another favorite story of Hubby's and mine is about the time Joey escaped from his crib. He had these huge block feet that were great for climbing. Hubby and I were watching t.v. one night in the living room when we heard a thump, then the distinct sound of feet running. Down the hall came Joey, a huge mischievous grin on his face. The smile said it all: I knew I wasn't supposed to do that, but I did and I just wanted you to see that I did. He didn't escape from bed again. He didn't have to, he'd already accomplished that goal.

The Toddler Joey

As soon as Joey was about three, he loved to be outside. He was always willing to help Hubby with gardening or carrying something to another spot in the yard. He loved watering plants and riding his bike and digging in rocks and jumping in leaves. He thought of games to play outside and got his two younger brothers to join in. If he had to be inside, he was playing a board game or doing a puzzle. He would be playing with our train set or dancing to silly music.


He was always the leader, always in the middle of the three. As each new baby was born, he wanted in on the action. He knew that baby was getting the attention, so he jumped in to get some of the limelight for himself. He taught Knox how to crawl, and made Lil' C feel like the most important baby of all time. He helped feed and play with the babies and brought them toys when they were crying.



Our favorite Joey toddler story occurred when Knox was about a year and a half and Joey was about three. It was a hot July night, and we made the backyard slide into a water slide. Knox's diaper had become so heavy with water that he just stripped it off and was sliding down the slide naked. Joey thought that looked like fun, so he stripped off his bathing suit and was going "au naturel" as well. He always had to be part of the fun. He loved to laugh, and his laugh was infectious. He was simply FUN with a capital F to be around.

Always the same smile that showed all his teeth. 


Preschool Joey

Preschool Joey didn't cry or cling to me on the first day of school. He ran right in the building and never looked back. He loved to paint and read and sing. He loved that his wonderful preschool teacher did science with the kids by planting an herb garden. He loved cultivating his plants. And he loved the puzzles and dress up and games of preschool. He wanted to play every sport, try every daring thing he saw. He had courage to spare. He was a mama's boy, but he never clinged to me in fear.

At home, he loved dressing up in my shoes and make-up and hats. He always had a hat on. He loved old Halloween costumes and seeing how many of my bracelets and hair clips he could get on himself. And he drug his brothers into this dress-up as well. His imagination was limitless and his concentration fierce. He was always something unique for Halloween, whether it was The Man with the Yellow Hat from Curious George to a life-sized version of Stripey Kitten. He always thought of his own costume. Hubby and I have always wondered about the things he would have been able to do had he not "had a head full of tumor."

Do you see a pattern here? Joey LOVED LIFE. Every single thing about it. Many moms are bored at home with their children. I was never bored a day in my life when Joey was in it. He made me truly happy. I'm sure I had some frustrating mom moments, but I can't say he was ever a challenge to me.


Of course, that all changed shortly after his headaches started sometime after his fifth birthday.

After that, he was a different person with some hints of the old Joey.

Five years was all we got of this incredible human being. Five years' worth of memories and giggles and crazy ideas that we cling to in a desperate attempt not to lose them.

I will - and do - talk about Joey all the time. I will never stop talking about him. Even if it makes you uncomfortable, I will still talk about him. He is a part of me and will never not be a part of me. Gone are the days that we leave rooms untouched and don't speak our loved one's names. It hurts at times to remember what a vibrant life force he was; but most of the time it brings me comfort and cements the memories that I have of him firmly in my mind so that they don't get lost; which some of them have, sadly.

One of the best things you can do for a grieving family is to talk about their loved one. Before the after. Ask what their child was like. Listen to their birth story. Listen to silly toddler stories. Laugh and cry and hug and honor. Here is a beautiful post from another grieving mom that encourages you to talk about your own and others' children who have passed.

We know it's hard, but we love you for trying.




#thisischildhoodcancer
Stay with me all month long as I talk about ways you can help families of children who are battling this horribly unfair disease or who have lost their lives to it. Stay with me as I honor them alongside our precious Joey.







8/30/2015

Do these 3 things and your child - and YOU - will have a better school year

New shoes on feet, crisp unstained white polos on body, backpacks full of shiny new school supplies. Pancakes hot off the griddle, hopes riding high, anxiety working overtime.


We were on time to the first day of school three weeks ago. But as the week wore on, we got there later and later; and that 7:20 a.m. goal departure time was getting farther and farther away from the time we were actually leaving, shoes untied with toaster waffles stuffed in sweaty hands.

It built until one day, I blew. Ranting, raving, screaming - WHERE ARE YOUR GLASSES? WHY AREN'T YOUR BOOKS IN YOUR BACKPACK? YOU SHOULD HAVE BEEN DOWN HERE ALREADY! PUT YOUR SHOES ON IN THE CAR!

I felt awful. This is not the way I want to send my kids away for the day. It makes them in a rotten mood; and honestly, it makes me fear even more a school shooting and those being the last words I say to my children.

The house eerily quiet, I could hear myself think for a change. What are you doing, Kathy? You used to be a teacher! You wouldn't yell at your students like that. You would have a classroom management system in place with expectations clearly posted. 

Consequently, I spent the rest of the day prepping my house just as I used to prep my classroom. By the time my boys arrived home, I had graphs and charts and posters hung that clearly stated the objectives.

"I did my job, boys, now you need to do yours," I stated, and washed my hands of yelling for the rest of the school year.

Here are the three simple things I did:

1. I made a morning checklist. 



I hung this in my eleven-year-old's cubby. He is the one usually coming to the car and then going back inside saying he's forgotten something important. Now I don't have to nag and remind. Everything he needs for the day is spelled out and hung right by his backpack. It's in his hands now.

2. Designated a spot for important things:


Again, for my eleven-year-old. He is always misplacing his glasses. They can be anywhere from in the shower, to on the floor under the bed, to buried in the covers of his bed. This is the spot where they should always be. We are still working on this, but it helps a lot and is a huge time-saver in the morning.

3. After school expectations:


After school is another time I get tired of yelling at the boys to do certain things. So, I spelled it out for them. Don't laugh at my primitive pictures, but those are for my second grader who is still learning to read. This is where I have seen the biggest difference. I see the boys checking the steps when they get home. Just the threat of losing the screen time - which is clearly spelled out as a consequence - is enough of a motivator for them.

We usually get home at about 3:30-:35. I put in step #6 for Slim because he needs to check the Brain POP of the day. The other boys skip that step and get right to their work, adding that 10 minutes on to their screen time later or to their active time.

As a supplement to these strategies, I'm also employing:

  • Consistency. This is something I've had to work on personally. Getting up at the same time, getting the boys up at a set time, and leaving the house at the same time every day no matter what. This helps a ton by getting the boys to school early enough to be ready for their school day. 
  • Scheduled homework breaks. Lil' C doesn't have that much homework in second grade and Knox is really good about finishing his fourth grade homework, but Slim has a lot of sixth grade homework that is tough for him to focus on after a while. I let him have 5-10 minute iPad breaks after a certain amount of work - that I designate - is done. Sometimes I will ask him to estimate how long something will take him to do. Then I will set the timer; and if he can beat the clock, he earns extra break time. It really helps to motivate him. 
  • Praise and extra mom time. I am always sure to point out what the boys are doing well. I am specific with my praise, "I like the way you sat right down and started your homework without my help." With so many boys to help, I try to set aside extra time to read a special book or play a game with someone whose homework is done. 
I'm starting here; and if necessary, I will add some behavior mapping if people are slacking off and making poor choices. Search Pinterest boards for some ideas on how to create a behavior map. Be sure to put both positive and negative (or expected and unexpected) behaviors and consequences on it. 

Your child does not have to be a special education student, or have ADHD or ASD to benefit from these strategies. We all learn in a variety of ways from visual to auditory to kinesthetic. I bet you have more than one type of learner in your house. Trust me when I say, this will work and save your sanity. 

I'll post more tips as the school year progresses. Do you have an idea that works for your kids at home or at school? We'd love to hear it! Leave it below or post a link. 

Together we can help our kids succeed (and save ourselves from headaches!).

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