Discipline

This is a tough topic. 

When Larry was first diagnosed I consulted a friend who’s son had been through our journey and was thriving, how did she handle discipline? She simply answered, we didn’t. 

 It is so hard when you have a child on daily chemo with crazy side effects: sleepless nights, no eating, eating like crazy, bed wetting, foot pain, foot and hand numbness, and emotions that run the range from crying to anger to fear.

Then when they do something that warrants discipline……….you debate is this the chemo, side effect, manipulation, or actually disobedience. 

 Jeff and I have struggled with seeing the difference and we do believe in continuing to support those things that regardless of your circumstances you need to show respect and honor those in your family. 

 Recently however as I see friends children fighting for their  lives, literally, and I am scolding mine for not making his bed, or picking up his things, or not putting a napkin in his lap……I am sobbing as I think that if he were not here anymore who cares about those things. 

 We raise our children believing they will be around long after we are gone thus we want them to have good manners, good behavior, strong beliefs, strong ethics, strong convictions, get along with others and have fun.

With the burden of not knowing or the fear that this might not come to pass I struggle with the discipline when really I just want to hug, laugh, smile, joke, run, play, and laugh and hug some more.

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Rear View Mirror

Throughout our journey I would say to Larry there is a reason the rear view mirror is smaller than the windshield……why……because we need to look forward.

He now recites and reminds of this as well when I get down or doubt.

See the best part of the past is just that it is in the past.

We want to bring the BEST of the past forward, not dwell, no linger, and no question.

We want to not worry or fret about how we did last year, last month, or yesterday.

Yesterday is gone, Today is all we have, Tomorrow is a promissory note.

Instead each day we must focus forward on our new destination and design the best map to navigate, steer, step on the gas, slam on the breaks, turn, turn, and turn…….believe me you will enjoy the journey !

Don’t pull over and just look side to side and stall out

You can pull over, re navigate or as Sylvia tells me: recalculating…..you can refuel, and you can even turn around….when you do remember you are not really going back to where you came from …it is still new each time you visit.

We are going to daily blog about our rear view mirror and our BIG front window.

We are going to navigate through this thing called Life.

We hope you will continue to join us.

 

“no matter how passionate you are about whatever it is your are doing, you will inevitably have times that you feel like you are in over your head. You will get tired. You will feel like giving up. So when it happens, don’t be surprised; it is part of the journey? Lisa Hammond

 

 

Scarred Beautiful

I have had the privilege and the honor to be interviewed by Andrea Smith the author, creator, dreamer, believer, and overall amazing women that has created this movement.

https://scarredbeautiful.com/

I hope you will be inspired and look at your scars as beauty marks that show healing, kindness, history, and love.

Here is mine: https://app.frame.io/v/i0d5tpz3

As I see it all scars start as a gash and slowly we heal. Some are noticeable, visible while others we never see but we can ‘see’ they are there. Be open to sharing your scars. Be open to sharing your story.

Bless you.

 

 

 

Long Term Survivor

We never thought or dreamed of these words being part of our Larry’s life but they are and we are grateful !

We just learned that TODAY is the DAY that marks 2 years post Chemo, remember the big party we had and many of you celebrated with us at the Children’s museum marking his final chemo, thus he is termed a LONG TERM SURVIVOR !

Larry will be celebrating every day this year in little ways. Our hope is that you too will simply celebrate in your way and in your own life.

There are not many times that we simply celebrate. We would encourage you to today just celebrate LIFE. Celebrate those that you share your home with. Celebrate those that you share your work with. Celebrate those that you share your neighborhood with. Celebrate with those that you share your life with.

Watch for future announcements of up coming celebrations as we continue our journey living to the fullest !

 

Delayed posting stream of consciousness 

This summer I know it’s been a long time to post and it’s been one of those mixed reviews in posting. 

Larry left for camp for 6 weeks to be a regualar kid……He had  an amazing experience kids from 38 states and 32 countries  all learning basics for respect as well as having an absolute blast he did catch a cold that then lead to a sinus infection then lead to bilateral Pneumonia !!!! 

Very scary way to end camp as  well he wasn’t taking his probiotic wasn’t getting enough sleep , water, there’s lots and lots of reasons that I kid doesn’t really take care of themselves … but when you’ve been through waht he has I understand not wanting I to run to the nurse …..however the truth is this is also a scary diagnosis for a kid that has had the journey he has had.

folks helped talk me off the cliff all I wanted to do to get him from Indiana to Arizona then have the proper testing done to confirm it’s just pneumonia , we started anabiotics, he got his oxygen levels up to fly, we got them to UMC banner and yes it was just pneumonia prescription: rest medication and fluids

Exhale

It’s interesting as we walk through this life we could find things that absolutely shocked and disappointed really don’t encourage us to have and then we can you uncover recognize that show us tremendous joy

That being said in recent days weeks months I find that some days my recognition of fear outweighs my recognition of joy is it our own internal check our own internal feeling our own ego our own Life or is it simply that some days there’s just not that much to celebrate, it’s just not that much and maybe we do need to sometimes recognize the unkindness hatred and attempt to improve on it 

as I thought about this I found that many days with sometimes I am hit with something. I truly choose avoidance and attempt to just find something that’s happy or brings me hope and I wonder if instead I’m supposed to step into that situation a little bit more to create change something to think about today in this bullying political environment

Jeff and I find ourselves in the first response when someone has a friend family member coworker that is dealing with cancer whether it be their parents their spouse their friends their child 

the desperate call to what can I do, what can we do 

it’s interesting how the two of us respond to that question a bit differently and yet very similar 

first responsders need to do something that would help them not have to think about what has just happened 

whether that pick up groceries 

take dinner 

take lunch 

get gas in the car 

walk the dog 

feed the fish 

bring the mail in 

clean out the fridge  

Pull the trash cans on trash day 

the things that seem like those are routine are the things that are so disruptive when you are attending to  the end. 

And it also reminds us and how blessed we are that reminds us of all the people that dropped us off helped us in our journey
Uneventful start of school  

Larry was there locker turn into supplies turned into school work picked him up he had a great day we’re now two weeks in and he’s in seventh grade he’s thriving he’s organized he’s understanding what it means to be a regular seventh grader he’s growing and he is goofy joy! 

We are absolutely celebrating every minute we are absolutely joyful at the regular things that occur. This is his first first day of school 

since 2011 he’s missed for first days of school 

that’s too bad 

he’s also missed three last days of school 

that’s too bad too 

but is he says to me,

‘ Mom, there’s always another day 

we can always say that there’s another first day 

we can always celebrate on another day, whatever day we need to we can make the rules just like mom you say we can celebrate my birthday any day 

just like mom you say we can have Thanksgiving any day as long as were all together 

being thankful mom this is how you do it 

so even though yeah it’s really cool that I get to have the first day of school with everybody else 

I’ve also had a great first days of school because you made me recognize that it doesn’t matter. ‘
We went to Banner/Diamond Children’s on Wednesday , September 27th, for a f/u. Call it superstitious or just plain needing to hold on to the regular …..I needed to wait and hear that we are out of the woods from this summer before I could sit and write again. I heard this ! I also heard…..Jaunary 27, 2017 he will be a survivor ! And April 18, 2017 he will be 2 years post chemo thus he will only come in every 3 months ! Then 6 months and thus by the time he starts high school just once year. Yes, the rear view mirror is getting smaller and the front windshield bigger !!! 

Day 9 of 42

WowI guess I really did need this which was part of Larry’s reasoning to go to Culver Academy for 6 weeks.

I am missing him.

I really miss him.

I have gone through all the phases and am today honoring my feelings of grief.

I recognize that him being away feels differently for me as we lived through the thought that we might loose him.

I am not questioning his fun adventure and ability to be a part of a regular kid camp.

I am simply acknowledging that I miss him.

This is a big transition as he is growing up and his history with the possibility of his loss.

It is in the back of mind and is making me feel very vulnerable.

I am taking today to blog about this to simply let myself be full of my sadness, my grief, and this separation so that I can move on through my day.

What are you pushing down ? What are you not letting yourself feel to its full potential to then allow you to let go ?

I encourage you to embrace your feelings, allow yourself to feel it all, and see what then the day brings forth for you and for me.P1010322

Traveling

How traveling has changed ! Not just the overall change in traveling with new security; baggage fees, no food, smaller seats, longer wait times, no control, but with me it has changed for me personally.

 

When I was in  my 20/30s I so enjoyed traveling. I was what they call today a road warrior and I prided myself on this fact with my platinum status, mileage plus, jumping on flights for just a night and truly enjoying seeing the world all while working.

Once I was married and with the kids the travleing became less and less exciting especially with the changes in the industry and security. That being said I still truly love it.

I have not traveled alone in 2016 for an extensive trip until now. It was interesting because the kids did not want me to leave. They went on an on about how 6 days 5 nights is just too many. They had to drive me to the airport.

As we drove there was tension in car with me ‘controlling’ the schedule while I would be away, feeling the pull, feeling some guilt in leaving….I believe it is the same feeling that most seniors have as they begin to let go and move on thus some unkindness is used to make leaving that less hurtful. We pull up the curb…everyone gets out and hugs me individually and as group as if I am leaving for a very long time. No tears but lots of emotion.

As I walked into the airport it was if I was flying for the first time, leaving the first time and yet this overwhelming feeling of love as well was surrounding me.

Making every day count is the matra and today I ripped the band-aid a bit too strongly yet my little family knows I love them, cherish them, and would do anything for them. They also know I have high expectations for them, believe in them, and have very strong faith.

I flew with a new confidence and conviction that this is what I do need to be all that I am for them….without guilt.