Pake Update

Hi Everyone,

We wanted to check in and share our latest update. Pake is doing really well! The major side effect of the radiation treatments is being tired. He's pushing through it and staying active, as his doctors have shared that this is really important, especially after the treatments end and his body works to heal and recover. Once treatments are finished, we'll be back for a scan in October to determine the results.

He does have other tumors that will need to be treated. The next one we are watching is the one in his brain stem. If it doesn't grow, he can wait until after graduation to begin treatments. That round will likely be longer than these, due to the location.

Pake has his books and computer and is ready to get to school. He's missing our family and friends back home.

For now, we are focused on our daily routine. Up early, drive across town and swear at the traffic.... return home, eat lunch and do homework. 

Leah, Stu, Silvan and Eliana have done a great job of making us feel welcomed, included and loved! They've keept us entertained and fed. We feel very fortunate to have such an amazing, fun group of Omaha friends! 

Additionally, Pake is enjoying "Police Scanner Plus" App. If anyone wants to know what's going on in Omaha, he's the dude to ask! His favorite show is "Cops." He says doesn't enjoy drama in his real life, but for some strange reason he enjoys watching it on tv? He told his nurse, Cindy, that he also enjoys Spanish soap operas....with subtitles of course. (I think Mr. Heaton might be happy to know this!)

Here are few picture highlights:

Go long, Silvan!

Football Tour!

Testing out the throwing arm at a Storm Chasers game. 

Watching "Cops" and chillin with Leah

Taking Caleb's "baby" for a spin!

Tubing on the Niobrara!

Woo hoo! Fun in the sun!

Mama n the boys!

Stu, Pake and Leah, at Smith Falls

Parker, Pryce, Robyn and Pake on Brewer Bridge

Dart Champion

Good times with the Soul Family!

We want to thank everyone who has invited us to supper, spent time with us, laughed with and encouraged Pake. Thank you SO MUCH for the calls, kind words and supportive messages, it makes this time so much more bearable. He is such a great kid and he's handling this very well. He makes this challenge look incredibly easy, and we all know that it is not that. 

The Best Laid Plans.....

One of the things that I tend to resist is planning. While I appreciate organization and I know that making some plans is supportive, I prefer a more "freestyle" approach. It is a funny thing. We make appointments, work to stay on a schedule, have things going a certain way and then BOOM, life happens and things... change. This summer has been a continual affirmation that there is little that I know, even less that I am in control of and sometimes it is a total act in trust, faith and patience. It's been insanely FUN and challenging, all wrapped up together.

We were all set to head to radiation yesterday and got a call as we were on our way out. The "test run" for Pake's protocol didn't pass quality inspection. At 87% accuracy, they couldn't confirm that the radiation was going to go to the targeted area. This is his hearing and we are not willing to take chances or compromise his good auditory nerve. While it was an inconvenience, I also appreciated the specialist taking time to explain what was going on, what the process involved and why we were not able to move forward as planned. So what to do when things don't go as planned? How do we proceed when we are feeling really annoyed because what we had planned didn't pan out?

In all honesty, I was annoyed when I initially heard the news. We drove four hours to get to Omaha so he could begin treatments and now we don't have a set date. Hummmmm. There was that strong urge to shut down, be angry and frustrated. I know these reactions well. And... I recognized them right away.

I took a deep breath, I walked outside and sat on the porch. I took in another deep breathe and I listened. I listened to what "Michael" had to say. I listened to his words and his tone. He was apologetic and he knew this was an inconvenience. He was nervous about how I would respond and what kind of person he was talking to and.... he was doing his job. He HAD to tell me this information and he knew that it was out of alignment to even think of continuing until they could be certain that the calibrations were going to work as intended. I was deeply grateful for his knowledge and his willingness to take the time to explain everything. 

How many times do we stop to really listen to and receive what people are sharing with us? How many times have we bitten someone's head off when they are simply doing their job or sharing their truth or just letting us know how they feel? Yes, my reaction one of being annoyed because the team was gumming up the works of MY plan...... oh my... I caught myself there. How can I be annoyed at them? Or anyone else? This is just how things go, sometimes they work how we want them to and... sometimes they don't. 

I think when we have something in mind and it doesn't go as planned there's a tendency to stay stuck on what we wanted to happen. We're still "back there" when right in front of us are abundant opportunities. "Okay, that's out, so what's next?" Has been my next game plan. Sometimes I don't know the answer. I sure didn't yesterday. It worked out just fine. We had a great day, got a little "pampering" in (Thanks, Leah!) took Pake out for his new favorite dish (fried rice and chicken) and enjoyed great conversation and laughs. 

We didn't limit ourselves because things didn't turn out how we wanted them to. We looked for and opened into what else was possible, what experiences and gifts were waiting for us since the ones we thought we were going to have didn't come through. 

No one can say what is coming next. We can make plans and we can have some ideas, but really we don't know. That's part of living in this time, place and culture. We have to become ok with not knowing, which is scary for those of us that prefer the safety of routine, habits, patterns and boundaries. I'm not sure that the unknown will ever be really comfortable for me. I am shifting to look at the unknown as an adventure, an experience. I want to make the most of every day and my intention is to LIVE full on. To do this, a lot of my own beliefs and limitations are being challenged. This is not always comfortable and it certainly isn't easy. I can feel growth though and I feel myself changing from the inside out. I am constantly coming up against my own thoughts and beliefs and testing them to see if they still fit. Some do and some do not. 

The other day I was going to wait to wear a fun outfit combination. My initial thought was to put this aside for a different, future event. I was just going out to lunch. (I caught myself here too.) Why wait? The cute shirt and skirt made me smile, shouldn't I wear them now? Today? Why was I making a future event more important than the present one, right here, right now? 

Our lives are a serious of choices within each moment. There is no guarantee that we are going to pick the right choice. In fact, there may not be a right choice. What if it is just a choice? We make the choice, find out what happens and keep moving forward. I've lived with a lot of regret, guilt and second guessing. Growing up I had tons of anxiety over making the "right choice" the last thing I wanted to do was make a mistake. I now see that differently. We are going to make mistakes, we are not going to be "on" and hit the mark every time. If we are going to truly LIVE and experience life, we have to be willing to be ok with what happens after we make a choice. If we don't like something we can change it. Yes, we have to live with that choice but LIVING implies that we will also learn from mistakes and we will continue to grow. Some of the big mistakes that I felt I've made and beat myself up with at the time, proved to be some of the most beautiful blessings of my life. It's all perspective. It's how we look at the situations within the act of living, and still claim the sweet blessings that continually surround us. 

I don't know what the rest of today will bring. I don't know how tomorrow or the next day, next week, next month will go. I always hope for the best, brightest and most positive. I continually look for ways that my journey can inspire and strengthen others. I have made the choice to LIVE right now, right here. 

As for planning, I'll be writing down what I hope comes through. I am developing a rare talent for turning scratched out events into rare art forms and animal shapes. I hope wherever you are, whatever you are experiencing this moment as you read these words that you will make the choice to LIVE. Wear those fun shoes you've been saving. Cook that special meal that you've been thinking about. Tell the person you've been admiring how you feel. Look your babies in the eyes and tell them that they are beautiful gifts and how grateful you are for them being in your life. Take a walk. Make a positive habit change. Challenge yourself to find the good in even the shittiest situations. Speak your truth. Live from your heart, even if it doesn't make logical sense. Be who you are. Love yourself, love others. Share your gifts, inspirations, encouragement, support and gratitude. 

Here we go...

Happy to report that Pake completed the preliminary work for radiation today. The staff is very kind and his nurses are stellar. He walked in and out, with a smile on his face. Today's highligh was getting to choose the Pandora music, "2000 something Country" (I'll keep my opinion on that to myself :) 

He'll be here once a day, starting next week. It's going to be a long 6 week haul, but we all agree that it is better than surgery. He's had enough of that to last for a long, long time. 

I'm super proud of Pake's positive approach. Not one time has he felt sorry for himself or complained. What an inspiration he is! 

Everything is better with {old} Country Music! 

Signing the consent form

We want to thank everyone for the support, messages and encouragement! 

A Blank Page

It's crazy to ponder how my life has changed recently. I've fought long and hard to "become," to create a life that I wanted to fully participate in. When I sat down in January and penned my intentions for the year, I had no idea how things would shift and change. I had long-held dreams, desires, and hopes pulsating in my heart. I held on tight. Too tightly. I knew if I let go, things wouldn't be the same. 

I've learned you can't hold on to situations and people. I've known this but I had to re-learn it. We all have a choice of how we want to spend our days, how we want to live and be and what we want to experience and who we want to experience life with. We can put fourth a lot of effort, hoping things will go how we want, we can offer invitations and encouragement, but when it comes right down to it..... if we have to force something or someone to be in our lives, it's probably not meant to be, or at least not in the way we thought it was going to be. I've beat my head into an invisible wall until it was bloody. I've cried rivers, and none of those tears produced my desires. So I stopped. I stopped forcing, I stopped hoping, I stopped trying to make things happen. I let go. My stubbornness is an attribute that has kept me going, it's part of why I am where I am today. While it's admirable to work hard for something that I want, it's equally exhausting to keep working on on a project or person that doesn't isn't willing to put match that devotion, time or focus. There's heartbreak in letting go but there's also relief. 

I'm sitting here on my porch, looking at a blank page. I have no idea what words and experiences will fill this page. I only know where I've been and how I'm approaching life now. It's uncertain and I'm good with that. I'm waiting on a call that will determine the path for the rest of my summer. Pake has a small tumor on his right auditory nerve, this is his "good" ear. We have a couple of treatment options, both equally risky. This is beyond our control. The option that looks the best requires a relocation to Omaha for six weeks and daily radiation treatment. While we are blessed to have my best friend living in Omaha, this is not a vacation. While I love to travel, explore and experience, I am also mindful of the need to have a home, routine and some predictability for my children. This move will shake things up. The overall goal is to preserve Pake's hearing and so we will do whatever we have to do to ensure that he can hear, for as long as possible. 

We've made an unspoken agreement that our outlook is positive, we purposely find the good, the blessings and the benefits within this situation. It is all "unknown" yet we know how we look at this situation, how we act, react and deal with the challenges that arise are ultimately going to determine our attitude. This is not ideal, but few things in life are. We have Soul Family and friends that support us. 

We've come a LONG way since his diagnoses and now, five surgeries later we are grateful that we can walk in and out of the UNMC, and not have to spend the night. It's summer time and he's not missing school. I have a vehicle that runs down the interstate so we can have Parker and Pryce with us every other week. We WILL make the most of this situation, discomfort aside. 

I have some plans and ideas for what I want to create now that I've completed my Master's program. I still have BIG dreams and desires for what I want to experience, where I want to travel and how I want to offer my gifts, talents and insights to others. I'll continue to flow with these, tuning into the timing and working with what arises. 

In the meantime, Pake could certainly use some prayers and positive, healing intentions. He's 17 and this is scary. He's strong and positive. He knows who he is and what he's about. He's aware of the cards he's been dealt and he's determined to make the most of the life he's been given. As his Mama, my job is to embody the full power of love, support, guidance, humor {and healthy sarcasm} that I can provide. I'm still a Mama though and my heart is bit heavy because of the sacrifices that have to be made. We are not victims. We are human with all the worries and fears. I've never been one to sugar coat anything, so I'll simply say that heading into this with some apprehension. I trust that everything will be fine. I trust that I have people to lean on when things get rough but most of all I trust that we are right where we need to be. 

I wanted to start a separate page for Pake, but he said, "No." He would like me to continue to integrate updates here on my Facebook page and here. He doesn't want sympathy in any way. I want him to know that he's got tons of support, more support than what he can possibly imagine. He's one of my hearts and to know that he has to go through this hurts. 

This is our life. We will continue to live it, be grateful for the many blessings, the twists and turns, the beautiful surprises and the memories we are making. It is our hope that we can somehow be a reminder of how precious life is and perhaps be a positive example to those who are dealing with challenges, in whatever forms they are showing up as. 

Today, we are grateful for medicine, for technology and for the love and support of the wonderful people in our lives. 

June Travels: Part 2

We spent two day at home this week. Long enough for Pryce to create a couple of new paintings. This is one that she sketched out at home. She'd envisioned the colors that she would use and since we were due to hit the road, she brought the supplies along. It's a good thing that she is a mobile artist. 

We drove to Omaha on Friday and had lunch with Leah. We packed the vehicle and away we went. 

Since it is REALLY hot, I am reminding myself how GOOD it feels, as compared with how much I froze this past winter. We made it to Columbia, MO around 1 am. 




There were grand plans of taking the kids to the Arch. Due to construction, we opted for the drive-by, snapped a few pictures and called it good. Most of the day was spent driving (THANK YOU, LEAH)! I read and did as much homework as my brain could handle. I ended up getting car sick (thought I was over that) but apparently not. 




Pryce and Leah listening to Mulan and Lilo and Stitch songs. (UGH! ) It is seriously NOT my style of music, but it is adorable hearing Pryce bellar out the tunes. 

I've never driven past St. Louis so it was fun to see new country. I've flown to Nashville, but this was the first time driving. I did enjoy the many bridges and crossing the rivers. I am also loving the trees!

Downtown Nashville is pretty cool. Every big city has its one vibe. I love to walk around and and experience how a city looks and feels. Boston is still one of my all time favorites. We didn't do much walking last night. It was late and we were all pretty road weary so our destination was the Melting Pot for supper. We were very happy (and surprised) to find one here, Pryce was excited as the chocolate fondu is her FAVORITE!

While Pake is not a cheese fan, he TORE UP the salmon! 

The shrimp and teriyaki steak were DELICIOUS. I'm not a huge fan of sweets, but I will say I thoroughly enjoyed dipping the strawberry and pineapple chunks in the snickers fondue. Oh.My.Goodness. I also felt like I needed a wagon to cart my stomach home. 

We headed back to the hotel and I worked on homework until about midnight. I'm keeping ridiculous hours (for me) these days. My goal last spring was to be in bed my 9:30 and up at 5am. I'm way off the mark these days, part of why I really appreciate summer time. 

The kids will spend Father's Day with their Dad. Leah and I will likely go hiking. We move into our Air B N B later today. I'm really looking forward to having a bit of downtime there, beside the Cumberland River. If I have to do homework, at least I can do it by a body of water! 

Parker begins competing tomorrow! I'm so excited for him. What a cool opportunity to experience. GO TEAM NEBRASKA!!!! 

Recap, Pack up and Reload

I'm home for the first time this week. It's been a whirlwind and I'm loving it, except for the graduate class and walking pneumonia. There's no time for me to be down so...... I have two days to realign.

Here's a quick recap:

*Left last Wednesday for an AWESOME Spa day and Lumineers Concert with muh bestie.
*Hopped a plane and headed for Seattle. Hopped on another plane bound for Walla Walla.
*Enjoyed a FANTASTIC, FUN time with the soon-to-be Mrs. Buyssee and her Bride Tribe.
*Took in Walla Walla Wineries.
*Enjoyed an extra two hours circling over Denver, waiting out a storm.
*Drove home. (Leah drove, I studied).
*Slept for 4 hours.
*Went to Urgent Care and got meds that didn't work.
*Drove to Valentine to swoop up Pake.
*Drove to Omaha.
*Spent all day Tuesday at UNMC. Literally the entire day, starting at 7:45am and walking out of the hospital at 4:45pm

*Will spend today getting unpacking, repacking, doing laundry, cleaning out a nasty fridge, spending as much time as possible with my kiddos and squeezing in mega amounts of homework and hopefully be in bed before midnight (that would be a record!)

Pake's condition is stable. The MRI showed slight expansion of two tumors, nothing to be panicked about. He may have an additional tumor in his hand. This isn't all that abnormal, but it is unexpected and pretty strange for NF2. It doesn't hurt and it is not causing any neurological problems. He will go in for another check in three months. This will be his/our path for the rest of his life. He will always be tied to hospital. This is a disease and it is not curable. The plan is to stay ahead of tumor growth and to keep him functioning at as high a rate as possible.

It is a super shitty hand that he's been dealt but there's no other choice than to accept it. We don't know how things will go. We pray that the tumors are slow growing and that he can maintain his ability to hear. In the mean time, we will be "formally" learning sign language. Pake decided it would be a good idea to invent his own signs, so we spent about four hours in training with him! (I didn't get snake.... I thought it was a dolphin. I need more practice!) Pake opted for the cross hearing aids. This option is far less evasive than having another surgery for an implant. I don't blame him, he's been through A LOT. After saying for months that he doesn't want to have any devices, I think he changed his mind yesterday during the trial. For the first time in a year, he was able to hear what was being said on the left side and he didn't have to crank his head to the right. A big grin spread across his face and tears came to our eyes. Hearing is a precious gift. 

Since there's no way to know what lies ahead, our plan is to live full on, full out and enjoy everyday to the max. Pake's condition is a reminder to be grateful for EVERY moment, even if that moment is filled with tears and uncertainty. Tears dry eventually and usually this mischievous smile takes over.....

So this is the Air B n B we are hanging out at this week! (hahahahah) It's a pretty cute little spot. I love the flowers and the porch. Too bad the owner didn't have any coffee for us (I'll be leaving a note about that one). 

I do hope her washing machine is in working order because that baby is about to get a workout. 

As I came in last night and plopped my backpack on the floor, I realized how much I've lightened my load. I still have a long way to go in terms of downsizing and release, but WOW, coming home to a house that is more clutter free and less filled with "stuff" was definitely supportive. It made me glad that I spent the first few days in June getting this place in order. My only hope is that we can keep it looking that way while we are here. That is always the challenge! For those of you clearing, releasing and downsizing your spaces, I highly recommend working your asses off for as long as it takes to get to that point and then leaving for a week! You'll feel like you are walking into a new home AND you'll easily see the results of your efforts. I think this has to be one of the best ways to see progress in action.  

Alright, I'm rolling up my sleeves and preparing to dive into to the mile long list of things that have to get done before I leave again. I hope it doesn't sound like I'm stressed (well graduate classes always stress me out) but the traveling doesn't. It's very therapeutic for my soul. This is one of the things that I've always wanted to do. I appreciate having a place to call home but there's a pull to being on the go that I just can't get out of my system. I'm not trying to either, I'm just going with it. 

June Travels: Part 1

I found this fun hat in January. I was missing summer and sunshine. I had the image of wearing a sundress and this fun hat. However, the reality is that I do not own a sundress and even if I did, I have a high suspicion no one would see it because I'm a chronic sweatshirt wearer, I just don't like being cold. The hat won though. It's my new travel accessory.

We took in the deliciousness that is the Melting Pot. Oh my, oh myyyyyyyyyy, SO GOOD!

My PIC, as Pryce refers to Leah (Partner in Crime!) After having her esophagus repaired a week ago, she was ready to dive in to some solid food! (She owned it like a BOSS!)

 (

After a spa day and amazing supper, what more could a girl want......?????

How about her favorite group, "The Lumineers" at Red Rocks. Oh and front row too, how does it get even better than that?

Walking in to the concert. What an amazing atmosphere! 

Best seats in the house!

Concert shirt, definitely happy to advertise for them!

This was an absolutely AMAZING show. I can say this is THE BEST concert I've ever seen. Still blown away by this experience. Confetti coming out of the ceiling made me feel like I was in a fairytale, it was gorgeous!

As usual, I have a project going on....... I work hard to focus on the task at hand and be fully experiencing the present moment. That said I sometimes I do have to multitask. This time I am attempting to complete a final class for the Master's Degree. I'm taking it during one of the busiest (and most fun) moths of the year. I am home for just a few days here and there. Thank goodness for wifi, it's come in handy. I knocked out forum questions and quizzes in two different airports. The homework is continual but "it is only for a month." I have a countdown going on.

Flying into Seattle. What a view! I love it here.

The backyard of our Air B n B... This house is gorgeous and HUGE. Holy Wow, I almost need a map to find my way around. The decor is so fun and the conversation and laughter happening here is truly therapeutic for my heart and soul.

And just for fun..... we had some fun with Snap Chat filters. No, I'm not on Snap Chat and I don't see myself using that app anytime soon. That said, we got some fun pics of the Bride-To-Be. (They will likely not be showing up on my blog!) I will say that the statue outside has probably never had as much attention as it did yesterday evening, I'm still laughing at the creativity minds at work in this space. 

I realized as I was selecting pictures to share that this is the first time I've ever had this kind of a girl's weekend. Don't get me wrong, I have a great time wherever I go, no matter if I'm hopping a plane to explore a new city, playing golf or spend time with my kids. Hanging out with fellow females in a new (beautiful) place, laughing, relaxing and not having any agenda really feels good. I am usually so busy and on the go that I don't take time to just BE. My mind is always working and so I find I have to work hard just to relax....  Right now, having a mind that won't shut off is probably a good trait to have, as I am needing to dig deep for some maja study motivation. I have so many ideas, projects and experiences that I am ready to bring in! 

I certainly feel that I am at a crossroads. Already June is making me look at life from a totally different viewpoint. There's been some hugely unexpected shifts and I'm still processing them. I have no idea how this month will turn out, it's so very, very different than I thought it would be back in January. At some point, I'll pause to ponder all that's come through. Right now I'm taking a deep breath and just observing. I think that is the best I can do in the midst of so much changing happening around me. It's good that I'm moving fast right now because "a moving target is harder to hit." 

Garage Band

I could actually have my own garage band now... there's enough room to park my car inside! VICTORY! Back in April, my best bud, Leah and the Soul Family joined us for a weekend clean-up project. This has been something I've wanted to do since last fall but the time just hadn't been right. Cold temperatures and a busy schedule weren't conducive for outside cleaning and clearing. This was the first of two weekends that I'll actually be home in April (and not at all in May, and very limited in June) so it needed to count...........and we did make it count.

We cleared out a pick-up load of items for dump, donation and selling:

Totes full of books no longer needed or read... off to the book seller.

There were numerous totes filled will holiday decorations that were also donated. I did go through each tote and salvaged a few "vintage" items I'd collected over the years. They are small and can fit into what I am keeping. I hadn't opened these in two years so I knew there were very few items I wanted to keep.

 I LOVE fall decorations and haven't yet parted with my "sugar pumpkins. I have a collection of giant pinecones and antlers that serve as my seasonal decor. These don't take up much space and could easily be gifted, sold or recycled. I also have Christmas tote. I've pared down greatly here so only my tinsel trees, special ornaments, ribbons and vintage toys are left. Gone are the Christmas towels, placemats, dishes, figurines, candles, tins, socks, and four other totes of things I no longer want to house. The goal was to get down to two totes. Whatever didn't fit in the totes went out. Boom!  This fall after I decorate for fall, I'll downsize even further. When I move, I want to have exactly one tote of decorations. That's what I'm giving myself, which is monumental in light of previously having an entire store room filled with totes.

The kayaks went down the road to Omaha, where Leah, her family and friends can enjoy them. They were too heavy for me to hoist on the Subaru and since I'm gone a lot, I knew I wouldn't be using them. The electric bike is on it's way to a new owner. I did keep the other bikes because the kids and their friends ride them.

We sometimes don't consider the significance of a garage, in terms of Feng Shui, but we should. Garages hold items that are necessary and useful. The idea is to keep any space that we are caretakers of in good working order. It's easier to find necessary tools and relates to the running and productivity of our lives. Additionally, it just FEELS GOOD to walk into a clean, clear space. I have shelves that need to be re-organized but I'm going to give my sinuses a break. I ended up having a major allergy attack that turned into a nasty sinus infection. I will be investing in a mask.

In addition to reclaiming the garage, I also wanted spruce up the outside and yard. Leah beautified the weed bed by the house. We procured dark mulch and Hostas. It was quite the transformation!

Half and half....

After mulch + Hostas

All done! Grow Hostas, grow!

Even the Mums got some mulch-lovin!

My favorite transformation of the weekend is the front of the house! I have long had the idea of bright red flowers in the front of the house but had never gotten around to getting any plants there. We picked up geraniums, which are among my favorite (I adore their scent). 

Leah added the mulch and a few extra day lilies. We left the iris plants. The mulch is in a wave shape and dark in color, which supports the water location of Feng Shui. The red "fire" energies add a perfect touch of the opposing element to balance the effects. All elements are represented here: Earth (yellow color) Wood (house materials, plants) Water (dark shutters and dark mulch) Fire (red blooms) Metal (hanging sculpture).

I love this look so much, it makes me happy walking up to the front door!

We celebrated our efforts with a campfire and an early birthday party for Pryce! 

Complete with a DQ ice cream cake...... as is tradition!