Sunday, March 29, 2015

hope spoken.

Here's the thing. I am sitting here, music in my ears, kitchen table spread. exhausted and fulfilled.

...but I have no idea where to start. I suppose the best way to do this is let it flow as I type and hope to heavens that it makes sense in the end.

I am at a place in my life, a season, that so many see. I do the same things day in and day out. Sometimes I am a rebel. Sometimes I sit at home and drink coffee and doodle in my planner or bible instead of go to the gym. Sometimes I pay bills when I should be doing laundry. Sometimes I have to take reese to chemo instead of swapping the dishes out. Yet, the point remains that so many of my days are generally repeats of the weeks before. My heart feels anxious, at times. I feel as if I ride the waves  of "too busy to do anything else, so be content" and "there's something more for me. more for us." so often that I don't know if I am just an infinite dreamer or someone who is ahead of her time in God's process - and that I just need to be still.

Since reese was dx, I have learned how necessary it is to live in the moment. I know how fleeting life can seem, but embracing the moment as a blessing and also, at the same time, as... important can sometimes be a struggle. I understand that what I do each day is impactful on my kids, my family. There is beauty all around me, constantly - tears from laughter, tight hugs around the next, messes that just seem to pile up even have some sort of unique spell on me at times - proof that we're just too busy doing other life that I can't put that way right now. Taking the time to open your eyes wide enough to see these things sometimes takes someone else to hold your hand and point. This weekend was filled w lots of hands squeezing mine saying "look. that. that is because you are you." Being pulled into a tight hugged prayer by someone who I'd just met, changes lives. I gripped her sweet neck as tears rolled down my cheek while she prayed for my sweet girl, for my whole family, for me. It just had to happen and those things are not directed by us. They are just God's way of proving that every day, something amazing can happen - even if you're just shopping (talented, funny, wonderful) vendors late at night carrying a coffee cup full of wine (lol).

I also have to remember that things that I blog can hinder or encourage people - yet I always struggled with my future course. I felt as if I should always be doing something more. Sometimes I have these conversations with my friends about what I will do later. I will teach, I will write, I will do nothing. It almost seems as if I am bouncing around towards different goals, or just giving up, but really, it's just that I want to do so much. These speaker sessions brought tears to my eyes as if I had never been told "what you're doing is where you are supposed to be right now" from God before, directly. I walk each day with a happy (enough) heart, but I always thought, even hoped, that I was meant for something more... and maybe I am. But being okay with the day to day feels like a weight was lifted. This platform, though it may be small, that I have on this blog, is filled with so many wonderful friends and readers who lift me up, lift my family up, that I walked away from this wkend being more grateful for them, you, as well. I stayed up late at night with my undoubtably incredible roommate spilling secrets and belly laughing and I remembered how purposeful every second is.

I know I am meant to be my children's mother. This I know for fact. I know that EJ and I are the only two people that can walk hand in hand next to reese and lift her up, protect her, love her the way we do. So many people love and pray for her - and for that we are eternally blessed, but we are meant to be her parents, her lifeline. Her sisters each have a purpose for each other, for us. I spent a lot of the weekend floating between knowing that what was being said was spot on, but undecided on if I already knew it or just was saying it for so long to help me believe it.

But now I know, for certain. This is it. And it's all I need.

A lot of the weekend was spent talking about God's grace. So appropriate for this time in our lives. For this time in my life. Jen Hatmaker said, night one, that grace is not ours to give, its God's. and "thank heavens that we are not the ones to judge who God gives grace to". She went on to say that it is easy to feel unworthy of grace - as if you've messed up too many times, made too many wrong decisions, but luckily the world does not get to decide how far is too far. Jen told us a few things - that one, there's God and there's THE REST OF US. Those are the only two divides. Everyone doesn't get divided into smaller groups based on if you're an insider or outsider in the church, who knows the lingo or reads more bible studies. It doesn't matter the types of choices you made in your life to land you where you are. It doesn't matter whether you are an "outcast" or "socially acceptable" because those are not God's groupings. He has none. We have two jobs - to love God and to love people. 

That seems a lot easier than deciding who is worthy of His love. He answered: everyone. And no one is too far away.

My first speaker session was with someone who I have followed for years - Joy Prouty. To be completely honest, I almost changed my mind at the last moment. I told my roommate that "I already know her story" and that it may be a "waste of my time" to hear the same things that I likely already had read on instagram, her blog...

...I could not have been more wrong.

The word she chose to sum up her session was brokenness. I stared at the signage at the door, before I went it, for a while, questioning whether or not it was for me. But so often I feel broken - in ways that people do and do not understand. It is hard being strong for my family, for others, and sometimes instead of strength, it's just bits of sadness that are stacked upon each other until finally it looks like a mountain instead of a valley. The love from others transform my worry, anxiety, into hope and peace, most of the time, and for that, I feel as if I am luckier than most. Still, I almost feel as if telling her story is an invasion of her privacy - that the 60-75 people that were blessed with her words, her tears, know a secret, but it ends so amazingly - with miracles, with salvation, that it also is something that should be shouted from the rooftops.

The entire weekend, people spoke of God's timing, so perfect each incident - even if it wasn't what they thought they wanted at first. Everyone surrendered to the fact that there is purpose in our days and how they are laid out before us. There were miracles, there were stories so perfectly wrapped up in so much amazing, that they almost seemed unreal, fabricated.  We felt the pain of a new friend as she spoke about her father's untimely death. The story was one that would be thought to end in a valley, but instead, we all just gasped, let out tears as Kristin gave slivers of sunshine in pain - something so necessary, and prayed for continued healing. Not everything can be fixed, not every prayer can be answered as you wish, but finding the blessing in a seemingly hopeless season is what can be the break between forever sadness and actually doing life.

We had small groups every day. Our sweet leader asking us to dig just a little deeper than our comfort level. Hopefully one day, I can be in her place... leading women at hope spoken into a bit of sunshine where there seems as if there is not. I want to be there to listen, to understand. Because I try to. I want to be a rock to those who are at the bottom - I do not in any way feel as if I am at the top, but I do think I know what the journey up and down looks like. But as all journeys, it is my own, only.  That is why I've blogged for so many years, I suppose - in hopes that someone sees light in the story.

Everyone has a story. If I had to use a word for the entire weekend it would be storytelling. Learning from each other, relying on each other, that is what life is about. Wise Jen Hatmaker reminded us that we need to act like family. We are called to love each other despite what we may think one another is doing incorrectly, unchristianly, things that don't deserve that grace that God extends to everyone - we are hear to tell our stories.

We wrapped up the weekend with so much hope. Stephanie wanted us to feel blessed, feel full, and I did. She gave me a new life mantra, almost - Romans 12. Things to remember day to day. Everything was so simple - just love. just... don't, when you feel like you need to do the negative. I walked away feeling as if Stephanie had challenged me until next year - until hope spoken 2016 gave me a new challenge.

I have less than 12 months until I get to hear many more stories. I have less than a year to think on the things that these women have given me to chew on, to dwell on, to write about - and to tell about.

I am speaking as an outsider who yearns to be an insider. I am speaking as an insider who is desperately seeking to be compassionate to all who are not. I am an outcast who is left to question why some think I am not worthy and to question if they are telling the truth.

I am worthy. I am where I am meant to be. This is what life is - and I am blessed to do this life with you. 


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Sunday, March 22, 2015

always tomorrow.

there are certain things you do that are stupid. unkind. vindictive.

there are things that seem hilarious when you type them, but forget there is someone on the other side of the computer. or that it will get to their ears at work or school.

sometimes emotions, pain, sadness run more rampant than common sense does and you do things you wish you hadn't.

that's okay. because tomorrow is a new day. 

what if we were all judged by our worst day? what would that say about you? what would people at school or dance class or church say about you if they only saw your worst moments?

that you're a hypocrite? that you are a faker? terrible, huh?

it may seem like you have no chance to change people's minds or to redeem yourself, but that's okay - because you don't need them to change their minds when God already knows your heart.

I have spent a lot of time trying to clean out the bad that I have that comes in - trying to separate myself from someone who I was before. Someone rude and mean. Someone that people thought was absolutely hilarious most of the time, but sadly it was sometimes at others' expense.

and I am sorry. 

The only thing I can do now is live my life how I want to show others.

I am not a hypocrite because I bible journal, I am learning new ways to read the word and share with others.
I am not a hypocrite because I don't want to get into drama, I am trying to live differently and make choices that I didn't before.
I am not a hypocrite because of things I did yesterday, last month, a year ago, but I am simply changing.

a wonderful and life inspiring friend texted me today "Please Lord let me never be judged by my worst, but how He transformed my life". indeed.

you don't have to be one bit religious to know that today is all we are guaranteed and that tomorrow is a new day. a new day to be organized, lose weight, try harder at work, or simply just take your words more seriously.

it is an incredible gift to feel the want to show people that you can change yourself from the inside out. it is not self righteous to know you fail and to start over again. this could be for anything that you try to do and fail at. Be confident that the next time, you will succeed. And, well, if you don't, I will be there reminding you that there's another tomorrow to try again.

In church this morning, our sermon was about sin (I know more than one person out there is saying "wait isn't every church sermon about sin?" lol) but that grace is there because we do sin. and it's nice to know that it is not like earthly grace - which seems to be something that is taken very lightly. people are forgiven and then hated, loved and then tortured within the same breath. hypocrisy = irrelevance to those around you - and that isn't what anyone wants to be. no one wants to feel as if their life, the choices they make, the way they make people feel their life seems is irrelevant.

I am so sad when I hear my friends be hurt by others online or treated by other moms at the preschool, people who go to work and feel talked about or even just those who've others have made feel lonely. I feel terrible that I used to be that sort of person, not caring about others' feelings. hopefully there will be a time where other people remember that their tomorrow... is today.

It is okay to change. That is what we're called to do. Embrace it.


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Wednesday, March 11, 2015

illustrated.

This has been a good week. I feel as if I should have updated here about what the plan for chemo is. :)

We are continuing the vinblastine. When the oncologist called, basically they were unimpressed with the "growth" and don't want to call vinblastine a fail yet. Her head was in a different position and "it's been said" that vinblastine needs a bit of time - so we'll see. I agree with them and am really happy with this. Her next MRI will be the same time as our make-a-wish disney cruise - so I will have to decide (sort of, I mean, who knows when they will actually have an opening) if I want to know before or after vacation how it is continuing to work. I hope we can do it before, though - I am the type of girl who needs to "know". and wants a plan.

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This is spring break and my patience has been tried during the gray and rainy days. But today was sun and full of glorious smiles. I hope the rest of the week continues to be as wonderful. Being off routine is hard, chemo yesterday (luckily it was quick and easy), and this past weekend. When we got reese's counts back yesterday, they were lower than they had been  - I am hoping and praying this was vinblastine's way to say "hey, I am doing my job..." ;)
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If you are following me on instagram, you may have seen some doodling that I have been doing.

after reese had her discouraging MRI in december, A friend of mine contacted me with a great idea.

throw kindness like confetti.

she asked if I would be the recipient family for her kindness calendar. oh what a month it was - cards with amazing words of hope and love, gifts for the girls, encouragement for us. It really is such a sweet thing that she is doing and I hope it catches like wildfire.

One of the things my sweet friend does in her bible is journaling. If you look at #biblejournaling or #illustratedfaith on instagram, you will see hundreds of inspirational women with gorgeous art work in their bibles. The concept is this - while you're reading, doing your bible study (beth moore's children of the day, here), needing a certain verse to get you through a difficult time, whatever it may be -and something stands out at you... go with it.

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Things I use:

A Journaling Bible
Micron Pens
No-bleed Gel Highlighters.
Watercolors.
Washi Tape.
Twistable Colored Pencils.
Alphabet Wooden Stamps.
Clear Stamps and Stamping Block.
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and really anything you can find at a craft store.

I am a simple gal who doesn't use a lot of the crafting supplies like stickers and such, but you can see on IG how many women go absolutely nuts with those things.

Anyway, sort of an explanation since so many people have asked me on IG :)
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Wednesday, March 4, 2015

quick update.

Waiting is the worst. No matter you find out good news, bad news... the wait on which it will be, is the worst part.

Our onc called last night before I went to bed and it was just news that requires more waiting and thinking. The radiologist said "slight growth". Then the oncs looked at it and were sort of "ehh" about it. Not that they totally disagree, but we'll see.

Tumor board is tomorrow. Which I always try to picture in my head and sort of have this overdone concept of what it is, but basically it's this: all the oncs, the neuro surgeons, radiologists, whoever sit around and go through patients. They talk about our scans, how we're doing, etc. So tomorrow, the radiologist will present (ish) reese's MRI. If there is some overwhelming "ooooh you're right that is growth worth worrying about!!" then we will swap treatments/chemo.

I am not certain, and neither are the oncs, that it's time to give up on vinblastine, though. It has been said by some that vinblastine MRIs sometimes have growth at the beginning and then stable out the rest of the time. Has it done part of the job? Maybe. It surely didn't grow like it did from Sept through December, right? I don't know, exactly when it grew. Maybe this was from the last MRI through the beginning of chemo. There is no way to know those things. So we'll just see, tomorrow, if we want to give it more time. That is not necessarily to say that it is a life-long fixer, but that stable year with this "easy" chemo, sounds amazing. And with a child that feels 100% awesome, it's not a bad idea to keep at it and do another MRI in 6-8w, as they stated. Our onc will talk to his colleagues and knowledgable friends in high places (lol) and we will talk tomorrow.

I don't feel as if it is my time to worry right now. Again, even after being somewhat surprised bc reese feels/acts perfect, I feel a sense of relief gaining more information. I like to be fully informed, I like that I have doctors that talk with me and not to me. I like to research and ask questions and have a list of things that are potentially "next". I am the type to get 2nd, 3rd, 10th opinions just to hear "yes, I agree with them".  I will spend the rest of the day talking like I am an oncologist while I wait for the real ones to chat me up. So, until tomorrow, there's really nothing else.

Except this headband that the kids made for reese. There's that.
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