TNBT – The Next Big Thing

Work has officially started on the new book. At the present moment, it is slated to be a sequel or “companion piece” to Guide Her Home: A Year of Hope After a Child’s Tragedy, but we will see how it all shakes out, once preliminary notes have been gone through and an outline has actually been created.

Because I am most successful when I know people are expecting things, I am chronicling my progress on Instagram. (Also, cats and knitting.) Am currently on a hiatus from Facebook, except to update events and the pages I manage.

I will continue to update here, as well.

“Oh, these little earthquakes. Here we go again.”

Moving, Part Two

Well, that was fast.

Jesse took a half day off of work on Thursday and the full day off on Friay and we put in some overtime on what we titled our “Living Matrix”. We created a spreadsheet that includes 20 different categories*, assigned a different weight, and each state was given a score of one to three (three being the best).

We began plugging numbers into the matrix and the difference in the scores became more and more drastic and we quickly went from 12 states down to five. California, Colorado, Massachusetts, New York, and Washington.

By the end of the day on Friday, as much as I tried, I could not find the sweet spot in Massachusetts or New York that would be A) close enough to the airport for Jesse to travel for work and B) far enough from the airport that we could conceivably afford to live there. Both of those states scored low on the “Work Support” scale anyway, so we removed them from the running, leaving us with California, Colorado and Washington.

A quick word about Washington: We thought Washington didn’t have any services we needed, because when we originally moved here, we applied for support from the Developmental Disabilities Administration (DDA) and we were denied. For our current research, we dug out the application and denial of three years ago, as well as the reports we had submitted and surmised that if we had simply appealed the decision at the time, we would have likely been approved in the end.

Washington actually has a good amount of services that are appropriate for Jessica. She has been involved in an “Access-To-Recreation” camp this summer, which serves special needs individuals until the age of 21 or 22, at which point they can transition to a “Community Outreach” camp. There are also four different categories of Medicaid waivers, and, of course, we have made some wonderful heart connections here.

However, California has the strongest heart support, as well as some great programs we are already aware of. It is fun to think about Jessica returning to services at UC Davis out-patient and there is a special needs school in our old stomping grounds that we once toured for Jess that we gave great consideration and weight.

But then… while Jesse was out at the lake with Jocelyn and her bestie, I set about to research the Brain Injury Alliance/Associations in each of the states. BIAs are organizations that help raise awareness about brain injuries, and provide resources for survivors and their families. Honestly, this was mainly research for Colorado’s BIA, since I am already pretty familiar with both California’s and Washington’s.

What I found on Colorado’s site was very exciting.

Colorado’s BIA is launching a “case management program” this summer.

“Through a competitive bidding process with the State of Colorado, the Brain Injury Alliance of Colorado (BIAC) has been awarded an opportunity to greatly expand our services to children/youth and adults with traumatic brain injuries (TBI). These services are free to anyone with a brain injury who lives in Colorado. There are no income or insurance eligibility criteria to participate.”

They will have case managers in each region of the state, they will call to check in on survivors and the services are available from youth into adulthood.

Jesse got home and after getting the girls settled into bed, he dug into their waiver programs and school options and we found that the services available are very competitive with Washington’s. Super competitive. Okay, seriously? Colorado blows Washington out of the water. Traffic fines and other state taxes give Colorado’s Department of Education $2,000,000 a year to provide TBI training in all of their school districts (my early research found that it was specific to one) and they are the author of THIS manual, which I have seen on many different resource sites.

More than what I have found on the east coast, Colorado seems to have their crap together with respect to brain injuries. They seem to have services everywhere, and it looks like they just seem to keep pushing forward.

It’s the kind of place we want to be. So, it seems my sixth-grade dream is coming true. (I did my state report on Colorado.)

Nil Sine Numine.

(I wrote this late at night, so wanted to update it to say: Before we put the scores for the programs and services into the matrix, there was only a half of a point separating Washington from Colorado. As excited as we are about the possibilities of services, it was a very tough decision.)

13886937_10153592986646415_8323757010272291434_n

* Because there might be some data/numbers geeks out there who would be interested in this stuff, here are the categories we used and the weight assigned to them.
Work Support (Double)
Heart Support (Double)
Programs Offered (Double)
General Waiver vs. TBI Waiver (Double)
State Politics (Double)
Jesse’s Choice (Full)
Jolene’s Choice (Full)
Best/Worst States for Disabilities Ranking (Full)
Schools (Full)
Work Travel Impact (Full)
Anecdotal Evidence re: Services (Full)
Divine Guidance (Full)
Cost Of Living/Likelihood of Homeownership (Full)
Brain Injury Association/Alliance (Full)
Outdoor Recreation (Half)
Weather (Half)
Moving Expenses (Half)
Travel time to airport (Half)
LYS (Half)
CMN Hospitals (Quarter)

Moving

I haven’t been writing much. I created one piece for a speaking engagement I was invited to on the topic of Grief, but due to the nature of the piece, I am not posting it publicly. Contact me privately, if you’d like to read it or see a dark video of my performance.

The good news is the frequency of my updates may be increasing. There is a lot going on with our family and trying to keep everyone updated via Facebook statuses that are mixed in with political and Hamilton posts, is proving to be difficult.

Also, I am reaching critical mass in my own healing right now. There are a lot of changes going on with me personally. Today, Jesse and I had one of those conversations where a slow realization crept up on me and I have some ideas brewing. My current intention is to share, but there is a lot going on.

First things first, the situation I am getting the most questions about is our living situation. We are currently in the process of researching the best place for us to live.

We recently had Jessica’s Neuro-Psych testing redone (the last time she had been tested was back in 2012), and the report confirmed some suspicions we have been having over the past year or so regarding Jessica’s future. The information revealed seems to indicate that Washington may not be the best place for us to live.

When we initially moved here three and some years ago, we applied for disability services for Jessica and we were denied. Coming from California, where we had a lot of in-home support in addition to all of our medical services, this change took some adjusting. Jessica has made some amazing progress in the past three years, but we have finally reached a point in her recovery where doctors are being a little less gentle about their thoughts on her prognosis.

It’s been sobering.

After receiving the report we come home and fired up Mr. Google. We found the services we received in California are available in many other states, as well, and we began building a spreadsheet including all of the factors that will influence our decision.

(Our current timeline for a decision is the end of the 2016-2017 school year. We are in a lease until May and I am still the President of the PTA at Jocelyn’s school. A job I don’t take lightly and could not leave my board in a lurch.)

We have ruled out more than half of the country, due to the region or politics or similar criteria, but were still left with 13 possibilities: CA, CO, GA, IL, MA, MD, MN, MO, NC, NY, OH, PA and WI.

In the few short days since beginning this process, we have actually added WA back into the mix since we have found services we were not aware of at the time we received the report. We have also eliminated NC due to their “Bathroom Bill”, GA due to anecdotal reports that services are increasingly being denied, and MN for personal reasons. The search continues.

We have already been receiving an incredible amount of support and offers for assistance with research and we are very grateful. While it is possible we will stay in Washington or return to California, it is just as possible that we could end up in Colorado (heavily influenced by Jesse’s work) or even the east coast (heavily influenced by services that seem to be available and the fact that they have two schools that are specifically for students with TBIs).

I won’t say we are back in the crisis mode we were in at the time of the accident and the years that followed, but the newest Neuro-Psych report has certainly ripped opened wounds that have never completely healed.

We ask for your patience and your grace if we seem emotional or over-stressed.

And please forgive the barrage of Hamilton posts. It truly is one of the things that keeps me going, while we deal with our ongoing hurricane and the moments where the words don’t reach.

Trauma, Grief, Eating Disorders, and Relief

Tonight, I had the pleasure of having a chat with a teammate from a health challenge I am participating in. A lot of stuff spilled out that I feel like needs to be shared. It fits in that category of things I wish were written when Jessica’s accident happened, so I put it here, in hopes that it will help others. The chat was about our eating disorders and how we are working to move forward from them after being triggered by major trauma. I am five years out (Jessica’s accident), but my teammate’s is fairly recent.

Teammate: I have a weird relationship with food, it’s unhealthy but it’s hard to see around it.

I hear you hummin’. My relationship with food is finally changing, but it’s been a really, really long road. It’s been five years since Jessica’s accident, and nearly a year since I decided to double down on therapy and get serious about taming my demons. It’s taken 9 months for things to start changing. But they are just starting to change, so it’s no where near perfect yet. For example, last night, after I cried for 20 minutes straight, I went and ate hot dogs and cake at one o’clock in the morning. Who does that? But whatevs. Nothing I can do about it now, except keep trying to heal up.

Teammate: I do that. A lot of people do. It’s hard not to just eat everything because it’s there or it tastes good.

I know. I’m trying to become more mindful. It’s hard to do those things without a reason not to. Of course, I have a lot of reasons not to, but still do them mainly because I don’t think about things. I’ve been swimming in grief and sadness and mindlessly indulging in bad habits. Until now. Now I’m thinking about things and the behavior is slowly, slowly changing. But it takes a long time and the Trauma game is no joke. It hasn’t been very long since your trauma. I admire your desire for change and for trying and I will support you however I can, but you also need to be as gentle with yourself as possible. You have to have a way to grieve your experience. You have to have somewhere to put those feelings if you’re not in a place to just allow them to be.

It’s more than five years later and, of course, I wish I had handled my grief in a healthier way. I wish I could have walked every time I felt like eating. If I had done just that, I would have lost all of the weight I gained from being pregnant with Jocelyn, so that would be a suggestion I have. Move instead of eating, when the desire strikes. BUT, I also know how it feels to be immobile. I am in a place of having to count regular activities as exercise because I sweat if I stand up for longer than five minutes. So, I understand the major resistance to a healthier choice.

In fact, I tried to get healthy two years after the accident. I started to see a trainer, but quit because the exercise was helping to move the trauma out of my body and I could not handle processing the emotion. I was not ready.

Teammate: That’s a scarily good point. It’s like if I shut myself down enough, time will stop moving too. I won’t have to be afraid that the other shoe is going to drop at any moment.

And that might not change. I still have that feeling. Jessica was having stomach issues a few weeks ago and I Dr. Googled her symptoms and found all of this stuff on Pancreatitis and Liver cancer, I closed out the browser, but not before I saw prognosis timelines of three to six months. I couldn’t breathe until we got to the doctor who was unfazed and talked us through what it probably was and to follow-up in two weeks if things didn’t start getting better. That showed me that I still live in the extreme where I am still afraid she is going to die from any little thing. Which sounds exhausting, but the good news is, a flip did get switched last year.

At the beginning of the school year, I was feeling pretty good. I don’t remember exactly what was going on, or what significant breakthrough had been made, but we were heading in for a meeting with the IEP team and I was feeling optimistic. We are walking down the hall of Jessica’s school and there were two girls walking down the hall together, chatting, as teen-aged girls do. Nothing big, but in that moment my grief washed over me completely.

As much as I hated the California heat, I would give almost anything if it meant we were still living there, because none of this ever happened, and Jessica and her friend Mallory were able to walk down the halls at school together, conspiring about boyfriends, and who was going to be the more convincing one to the parents about whatever bad teenage choice they were plotting next.

And in that moment? My heart shattered all over again.

She will never get that middle school or high school experience. She never gets to be that kid.

So, I was telling my therapist about this and talking about how frustrating it is that this sort of thing is still happening. I get to a place where I feel like I’m moving on and then BAM! Something innocent like her old dance coach posting an article about what happens when your child dances and I am un-fucking-done. I wondered aloud to my therapist that it would be nice to know when that sort of thing was going to stop happening.

Her response was: “What if it doesn’t?”

And the flip switched and I felt relieved.

What if it doesn’t? What if I no longer have to wait for the other shoe to drop? If I no longer have to wait to get better? If I no longer have to wait to BE better? What if I can be broken and grieving and not have to worry about fixing it all the time?

That is a huge relief.

It sucks that this is my life… broken child, orphaned and displaced, full of sorrow and regret.

But it is so beautiful that this is my life. Beautiful children – lots and lots of children! Loving friends who claim me as family, a beloved community, and so much beauty, magic and light. And you’re a part of that, and I’m grateful for you. Am I helping?

Teammate: It helps. It’s just kinda shitty.

It is. It may never get better and that may be the other shoe dropping.

I hate my life. I adore my life.

And there is a lot of freedom in that.

Ten Years

Adapted from the words I routinely share on this day:

Today is the day.

I always had a feeling about him. There were times I couldn’t shake him from my mind and I spent a lot of nights wondering why this random, young and seemingly uninterested guy consumed my thoughts so easily.

As soon as we got together, I understood. We were meant to be together. Whether you believe in Soul Mates or Fate or Destiny or whatever, we were meant to be together. Nothing has ever felt so right in all of my life and as long as I’m with him I know that I can get through anything. Together, he and I can do anything. I look at the life we have built together, the most difficult of times, the most celebratory of events, and I am so grateful that we have only come through it all stronger.

Seven moves. The addition of a child. The passing of grandmothers, fathers, aunts, pets, and the life we thought we would be living. . .

In some ways, we have circled right back around to where we were ten years ago, and in most other ways, we are simply worlds away. Through it all, what never changes are the words I spoke to him on our wedding day. . .

My entire life I have been told what a strong person I am. You recognize my strength and honor it, but you allow me to be what I haven’t been because I’ve been too busy being strong.

You do something for me that hasn’t always been done. You allow me to be weak. You take care of me and hold me when I’m scared and shaking. You balance me when I’m angry and raging.

You hold me and love me without judgment. Without patronization. And without the expectation that I must stay strong. You have helped me to find and to be myself.

I am committed to doing the same for you.

Guided by Air, I give you my word, my trust and my Truth.

Guided by Fire, I give you my passion, my inspiration and my creativity.

Guided by Water, I give you my heart, my love and my compassion.

Guided by Earth, I give you my strength, my patience and my practicality.

Guided by Spirit, I give you my soul. I promise to be with you now and always. Through all the lives we will live.

I love you, Jesse. One thousand times, yes. I marry you. I marry you. I marry you.

Happy 10th Anniversary! I adore you.

Mother’s Day

If you follow me on Facebook, you were able to see the scratches in the surface or the tip of the iceberg that is the plethora of feelings I have about Mother’s Day. From the most annoying reasons of it being a made-up, over-commercialized holiday, to the gratitude I feel toward my family for wanting to celebrate me as a mother, to the kinship I feel toward so many people out there for whom the holiday brings forth deep and complicated feelings. Which is why I approach Mother’s Day much like I approach the anniversary of Jessica’s accident. Wary, quietly, with no sudden moves. I tend to sleep in and upon waking, give myself a good hour or two to truly evaluate how I’m feeling.

Today’s result looked hazy. I sat around in my pajamas, posting random Mother’s Day articles on Facebook, while Jesse and the girls ran out to get me Starbucks for breakfast. Once they arrived home, I had my Chai and finally got to play Jocelyn’s “follow-the-clue” game, that she set up for me three or four days ago. (Like in the novel “Gone Girl”, Jocelyn leaves a trail of clues that lead me to my final present. Only. Happier. There are less burned diaries and missing wives and more Starbucks gift cards and homemade art projects in Jocelyn’s game.)

While reading cards from the fam, I wondered if I should stay in my pajamas or attend the knit afternoon at the local yarn store. (I have been working on a hat, and just had the decreases to go.) Informal Facebook poll convinced me to stay in my jammies and knit at home. I took my knitting bag to the couch and turned on the TV with the intention of catching up on all of the shows I haven’t been watching since the TV season began. Little did I know this would bring a special, unexpected gift.

While waiting for Jesse to finish putting away the load of laundry he was working on, I grabbed some water from the kitchen and came back to the couch to find Jessica sitting there. I moved my bag over and plopped down next to her.

“Were you going to watch with us?”
“Sure.” She said, complete with a shrug and as Jesse sat down, I fired up an episode of Survivor.

And we watched.

I saw Jessica flinch at some of the scenes and I began to rub her arm and try to reassure her: “The shots like that are very short and they don’t happen very often.”
She laughed a little and squinted her eyes at the TV, saw the contestants huddled around the camp fire, then opened her eyes and sat up straighter.

And we watched.

Show after show (I was really behind), we sat there and watched and I felt a piece of my heart inching back into place.

Survivor started when Jessica was just a couple of months old. I have never missed a season, so she has grown up with it. When she was a toddler she would sing along with the theme song and as she grew older, she wasn’t interested in the strategy, but loved to watch the challenges.

Throughout her recovery, I’ve tried to get her interested in it again. It wasn’t until her Panic Disorder made itself truly known that I realized it was the sweeping aerial shots and the panoramic ocean views that were freaking her out and I stopped watching it when she was in the room.

She has been making a great deal of progress with her PD, so I was holding my breath a bit when I started the show. Other than the initial flinching, she seemed fine. More than fine. When I asked Jesse if he wanted to switch to a different show, Jessica asked: “Can we watch more Survivor? I find Mike very interesting.”

(Which I think is fifteen-year-old code for “Mike is hot.”)

So, we watched.

I knit most of the day away, but sometimes we just sat there, her with her legs in my lap, or leaning into me, with my arm around her. She clapped and cheered and we high-fived when Mike won three challenges in a row, and she let out a “DANG IT!” when he lost an important one.

And we watched.

All day we watched. We’re caught up and she is excited to watch the next episode on Wednesday.

All I did this Mother’s Day was watch Survivor with my fifteen-year-old and it was the best Mother’s Day I’ve had in many, many years.

The tribe has spoken.

Five Years Later.

Yesterday marked five years since “Heaven sent a hurricane” in the form of our eldest daughter, Jessica, sustaining a severe traumatic brain injury. Every year, since that dramatic day, has brought something a little different. Celebration of her survival (year one), gratitude for the people who stood by us in our deepest and darkest hour (year two), freedom with growing independence (year three) and coming full circle with completing our book and preparing it for publication (year four).

I think my Co-Mom Libby summed up this year quite well: “I feel like today is maybe a better measure of the New Year than January 1st, all things considered. In that respect, happy fifth New Year, may it be ever filled with happiness and prosperity and hope; I know that regardless of whatever else it will be filled with love.”

This resonated well with me, as I reflected on the past five years, and more recently, the past six months.

Over the past six months, I’ve been struggling to shake off the cloak of grief and depression that has surrounded me since our family’s trauma. I have been trying to be more engaged and deliberate with my weekly therapy, joined a spiritual growth intensive, and began seeing a “self-care” counselor. I’ve also rejoined outside activities like those I was involved in before Jessica’s accident. I have been able to be more active on the PTA at Jocelyn’s school, as well as in activities at our church. In fact, I have been voted in for board positions for both of those for the coming year.

Yet, while this awakening is a good place to be, I am seeking a new balance. For the past five years, I have distracted myself from my emotions with food, sleeping, iPhone games and Netflix binge-watching, and these days I am immersing myself in school activities, church groups, social activities and the organization of our life.

I am working to calibrate the energy I put into outside endeavors vs. the energy I put into myself. I am ready to once again work toward the health of myself, my family, my community and the world. And I am grateful to be in a position to be able to manifest that into reality.

When Libby checked in with me later, asking how the day was treating me, I told her: “A little weird. Just . . . off. I’ve been in a crazy transitional time for a couple of weeks now, so it’s weird.”

I’d slept in, had Starbucks for breakfast, gotten a pedicure and was in the process of getting a tattoo when she and I were messaging back and forth.

“It’s one of those surreal moments: Really? Five years? So weird. I’ve slept through so much of the past five years, it’s hard to adjust to being awake. It’s a lot of work.”

And as the day crept on, getting closer to the hour of the accident, my heart opened up a bit, the tears began falling, and I was transported back to the moment our lives changed. At 1:45, we pulled into the barn. Approximately ten minutes later, the ambulance drove onto the scene. At 2:08 we were pulling away.

As I remembered the sirens and pulling onto the freeway, speeding to the hospital, I texted my forever-friend, Kari, with a line from “Home is Where the Heart is” by Peter, Paul, and Mary: “You are the string on my kite, you guide me into the wind. Thank you for coming when I called.”

Then with the tattoo done, I formulated the rest of my day. I went to Lush then to the local metaphysical store. Energy work done, and candle bought, I headed home to meet Jesse and the girls for dinner.

Later, as I sat on the bed, folding Jessica’s laundry, passing on too-small pairs of socks to Jocelyn and putting too-small pairs of pants in the garage sale box, instead of feeling the usual nostalgia and sadness of the past five years, I felt the tide turn a little bit more.

And as Jessica came walking out of her bedroom, her walker sitting in another part of the house, I once again felt that hope. . . that magic . . . the certainty I felt when she and I were lying in the dirt.

“You will be fine.”

We will be fine.

New Year, indeed.

July 28, 2014

We finally received the final files for the interior design and the book cover. We have uploaded the files to CreateSpace (the self-publishing arm of Amazon.com) and are currently waiting for the “file review” to be completed by them. This can take up to 24 hours.

Once the file review has been completed, we will order a single copy of the book to be over-nighted for our review. If all is well, we will order our first print run of the book. Enough books for the IndieGoGo supporters, as well as books for the book launch down in California.

We hope to have IndieGoGo perks and early pre-orders delivered by August 13.

We are very excited (and a little scared) to have finally reached this point in the process. Such a thrilling adventure, this has been. Thanks for coming along on it with us.

April – 2014

A big month for us.  Working on updating the website and hoping to get the E-Book released by the end of the month.

(BTW, this is a test post for the new website. Enjoy!)