All For Her

Like the hat? I love it! Why, because it belonged to Hilary. It's hers, but I've been wearing it lately.


You see, for the last few months, since August, I've been busy. Not just with regular stuff, or regular Rainey stuff, but with helping my friend as she died. What a horrible and holy labor of love!


I'm sure you can guess why it was horrible. I hate cancer! It took my lively, bubbly, determined, beautiful friend and filled her every moment with fear, pain, and agony. I watched as she took chemo and radiation, vomited and had exhaustion, endured pulmonary embolisms (which we realized began in my car but we figured she was dizzy and out of breath because she had been in her hospital bed too long), and have pain so bad that OxyContin and oxycodone together couldn't touch it. She was such a fighter. She called that part of herself "Heidi". You did NOT want to mess with Heidi! Hilary/Heidi fought so hard against the illness, for herself, for Wayne, Zach and Zoe. She was so determined to not leave her family behind. At the end she fought with every breath.


So, what's holy about all of this? Watching Hilary say "I love you too!" to her kids right up to the last day, even though she had been almost non-responsive since Monday. Watching Wayne hold her hand and gaze at her, with tears in his eyes. When he had to give her pain meds and needed her to wake up a bit, he'd call her name, she would stir almost immediately, in some fashion, her eyelids would flutter and Wayne would say, with a big smile on his face "There's my girl!". He hardly left her side during the last few weeks. I watched their cats hover around her hospital bed, especially on the last day. We had to keep moving them off of her legs. Animals are a lot smarter than we give them credit for. What holy moments I saw!


Had a few myself, while holding her hand, rubbing lotion on her bald head to get rid of the itchies, trimming and filing her nails because she didn't like her nails long, and because she knew how fastidious I am about fingernails. :) I talked, hoping she could hear me (pretty sure she did), about the day, how Zoe's cheer practice went, anything I wanted to say to her. Listened to music Wayne had set up on her laptop for her to hear. Switched the Pandora channel from worship music to Journey a few times.


The last thing Hilary, Wayne and the kids needed was me bawling my eyes out. Hilary didn't like crying, or the sad puppy-dog eyes she would get as a cancer patient while out in public. She was fighting it and she wanted no pity! So, i sucked it up and was my friend's friend. I felt very blessed to be let in, to help. The family did me such a great honor by allowing me to help them, be there, do chores, drive places and be Hilary's friend up until the end. I saw my main role as Hilary's comedian. She and I laughed and reminisced about children's choir, UM ARMY, youth choir trips, our children, you name it! We sang a few children's choir songs, talked about the Journey/REO Speedwagon concert Amy, Hilary and I went to, and scavenger hunts with youth!


And then there was the hat. We both loved Sesame Street and The Muppets from our childhood and could, at any moment break into this:

 http://www.youtube.com/watch?v=8N_tupPBtWQ


Hilary had lots of hats and scarves to keep her head warm and covered. They were in a basket attached to her bed and were useful props for our laughing sessions. Last Monday night, I was wearing the Oscar the Grouch hat. Hilary opened her eyes, looked at me and said sarcastically "You look beautiful, Beth!". That was the last time she talked to me.


The service today was so beautiful. Kathy's beautiful words, Amy's solo, the beautiful music sung by a loving choir family, the pink roses, Wayne wrapping his strong arms around his children, Zoe's poem, Zach singing/playing 'The Rainbow Connection' (the Steinerts and Tim, Hilary's brother, went to see the new Muppets movie recently. Hilary sweetly cried during this song). She didn't cry today. She was the proudest mom in Heaven, watching her children's loving tributes to her.


At the reception, the Oscar the Grouch hat and her Cheshire Cat hat were on a table of pictures and other mementos. I put on one and Amy wore the other. I must have been a sight! I had cried off all my makeup, looked exhausted and wore this crazy hat on my head. Doesn't matter to me. We did it for Hilary, to laugh with our friend, all the way to the end of her journey.


Thank you, Wayne, Zoe and Zach. Thanks, Hilary. I love you.

Polar Opposites? Maybe not!

There's a lot on my mind tonight. Feeling kind of numb. What I AM aware of is that there is something to be learned in everything and there's beauty and love in every crisis.

Today I witnessed absolute love and devotion in the midst of a life in the process of passing on. There was such beauty in every touch, word spoken, hand held, glance met. I've never experienced things like this before. Truthfully, I'm stunned and kind of having an out-of-body moment. How can there possibly be something magnificent in the middle of death?

A lot of people have there own opinions and answers. Mine is a 3-letter word. GOD! Who else could give me such a sense of wonder?

As I drove home tonight I noticed how black the sky is, and how bright and beautiful the moon and stars are. If I hadn't been overwhelmed and not needed any extra stimuli, I probably would have had the radio or iPod playing, rushing to get home. Instead I was silent (ya, I know. Hard to believe!!) and driving slowly (hush now!). Only in that space could I see the sky and the Heavens, the silhouette of huge oak trees and... a falling star.

Thank you, God, for this night, for what I witnessed, the precious moments with someone very near and dear to my heart and soul and the special bond we have that goes beyond words and, if I'm lucky, beyond this earthly realm. I will treasure this always!

To Quote Sponge Bob...

DBT. Dialectical behavioral therapy. This is a specific type of therapy helpful with Josh and Lauren's diagnoses, it's what they do at Youth Care in Utah and what Lauren and I are studying at The Tarnow Center. We then teach it to Rick so we all know the info.

Radical Acceptance. Accepting that at this specific time and place, this is where I am and how things are. Sounds easy. Not really.

I have a lot of things I need to accept. You'd think I'd have already done that by now, but that's not totally true. I have come to realize, and be ok with, many situations but I have a long way to go.

One of the things I've accepted is the situation in which I grew up in and know, REALLY know my parents loved me and did the best they could. I am at peace with all of that. Because of my radical acceptance of this situation, I could give my mom the love, care and understanding she needed her last few years and why I can be there for Dad now. I'm very grateful for it, as I know with my mom, and will know with my dad when he's gone, that I did all I could for them, with no regrets.

I thought I had accepted my kids' diagnoses. However, recently I came to the realization that I was under the impression that if I worked my tail off giving them all possible opportunities to learn healthy life tips and coping strategies while young, they would have SOME difficulties but be much less affected.

I was wrong!

They still are in anguish, with more serious life situations, and I'm having trouble accepting this fact. I really don't WANT to accept it, tbh. Hehehe. Like that? See i'm still hip. I know what tbh is! Except I think that saying 'I'm hip' negates it all.

Ok. What was I saying?

This is a new level of grief, I think. Somehow my mind messed with me, or maybe it was my heart, that said if I did everything possible for Lauren and Josh they would be just like everyone else's teenagers. I know, I know!!! But typical sounds wonderful to me!

This is an example of not having radical acceptance! Now, life as it is, with both kids struggling, is the truth staring me down. I don't like it at all.

We got thru Thanksgiving without Josh. I only had 1 small tearful moment, but then it was time to go volunteer at George R Brown, and then pick up Dad. Glad Dr. Roche suggested volunteering. Really took me out of my thoughts.

But now, I don't want to decorate for Christmas. Josh isn't here and he should be! How can I decorate, how can we do the tree without all 4 of us here, drinking egg nog, listening to Johnny Mathis's Christmas album? It seems like I shouldn't do it because he won't be here to enjoy it. I'm being mean by having Christmas without him here.

THIS is radical acceptance! Josh is NOT here. Rick, Lauren and I are. I can't sit and feel sorry for myself. I need to be here for my husband, daughter and dad. Christmas is coming whether I like it or not. We will see Josh in Utah for a few days but he won't be home.

Please don't tell me to be grateful for what I DO have. I'm not trying to be rude, just honest. I do know what I'm lucky to have. Mostly we're blessed that Josh is still alive and is in an excellent facility, helping him to recover. That's my present. Insurance is paying in full, for now. That's a huge blessing. Also, Lauren is willing to work on her "stuff" and hopefully a job will come through for her, to keep her on a regular schedule and give her a sense of accomplishment.

Que sera sera. I always did think Doris Day was a little too perky.

I have other issues to come to terms with that affect me hugely. Some family issues; NO, not the growing up ones, more recent ones! Keep up with me, okay??

Some family relationships are not as I'd wish. Yea, I know, you're saying "Get over it, Beth! What else is new!" Easier said than done, right? I need to let go, take things AS THEY ARE, and not have expectations. Damn that radical acceptance!

Are you thinking right about now that I'm addicted to exclamation marks? I'm realizing that, too! Oops, too.

A giant struggle for me is accepting the diagnosis of cancer of one of my best friends. I can't wrap my brain and heart around the fact that she's 3 months younger than me. She's in pain and no one can fix that, no matter how hard her loving husband, kids, friends and doctors try. I am cherishing every moment(like putting on compression hose), smile, giggle, phone call and text we share. It's still not enough. It won't EVER be enough!!!!!!!

Radical Acceptance = Being ok with life not being fair

I also need to accept that people are going to hurt me. Not everyone will like me, in fact some people might just really dislike me. People pleasing is sooo hard to rid! (I really meant that exclamation mark)

Our family is dealing with a crisis of faith. Not going to our church of 22 years anymore is a real loss. Huge! Needed to happen, been struggling with making that decision for a long time. I need to accept this, and realize that God is everywhere, even in a new church (kinda silly, huh?)

Im trying so hard to not be on a giant pity potty. Some times are better than others. Working on it. Geez, I hate working so hard! I know many feel as I do. I'm not alone.

This is where you all come in. I've really isolated myself from life the last year or so. Especially the last 8 months. Not good for the depression, ya know. Yes, I'm such a 'clevah' girl.

We had friends over for dinner last Sunday and after they left, Rick and I realized we haven't had anyone over to our home since Mom's funeral. Heather, Patti, Emily and Trey - you have no idea how special it was to have you over and what a great time we had!!

I've been trying to put myself out there and get back into life, as of the last month. Seen many of you for the 1st time in a long while. I loved every minute and I miss you all. I know I need you. However, I have these thought that hold me back. Who would want to be around such a miserable person? Not me? Who is brave enough to ask us "How are things going?" Hehehe, I wouldn't. So I hide in my room. A lot!

Radical acceptance- Quit being so miserable, Beth! I actually am working on that. Will take time to build up my confidence. But as Sponge Bob says, "I'm ready! I'm ready!"

Thanks, you guys :) Thanks, God :) Thanks, Radical Acceptance. :p

There's Humor in Everything!

So, Rick said to me the other day he wants a tattoo that represents our life or our current state of mind. I jokingly asked of what. He wants a toilet, with a bat sitting on it. The bat will have this wild looking face.

Ya, you guessed it!!! Bat Sh#t Crazy!

I just nodded my head.

P.S. See, I told you I wouldn't be all whiney and mopey!! Just honest! :p

Be Prepared for the Dumping Ground Ahead!

So, I know I've been pretty quiet since we took Josh. It was an extremely hard day and I just couldn't. Well, couldn't do much of anything.

We took Josh for a 9:00 am check-in and were there about 2 1/2 hours. I thought I was going to have trouble leaving him with strangers, but these people are amazing. Right away I could see how professional and yet down-to-earth they were. We found out that the psychiatrist that will meet with Josh once a week, watch over him medically and manage of his meds knows Dr. Tarnow (his dr. here) and at some point in the past worked with him. That is so reassuring, especially as they will be in contact with each other.

After we turned in all of our paperwork (18 pages on-line and 46 pages to hand in), we got a tour. There are 4 houses on the property and Josh will be in his house, with his "new family" the whole time. The kids sleep, eat, have group and individual therapy, go to school, etc. all within the home. They have outdoor P.E. everyday, and what a place to be outdoors! Draper is a suburb south of Salt Lake City and sits in a valley between 2 mountain ranges. Josh will have the opportunity to ski, go snowboarding, hike and skate at the Olympic ice rink. Glad I talked him into a REAL winter coat, not a Houston winter coat.

I held it together until the very end, but that goodbye was horrible. Josh did well with it. It was all me. He hardly slept the night before and mentioned several times that he was scared but once we'd been there a while he was ok staying. He was the one consoling me. I kept my hand over my mouth because I could feel that huge sobs were going to come out. Of course my eyes cried like a fountain that I couldn't stop. After several minutes Rick said we needed to go. I found myself frozen, unable to move. My feet could not move, even though I knew it was time to leave. Rick had to pull me to get me to move. We got out the front door, out of eyesight and ear shot of anyone and then I myself was a bit taken back on the sobs/screams coming out of my mouth. One of the hardest things I've ever done.

We went back to the hotel and just napped and looked at each other with glances of "How the hell did we get here". Rick was so good about taking care of me, so loving and nurturing! The only other time I lost it was the next day, as we were driving to the airport. But, we KNOW Josh is in the right place, being well taken care of. We can't talk to him until this coming Sunday, but we can get updates any time. He's adjusting fine and all seems to be going in the right direction.

I want to thank all of you for the many messages of support, the prayers and the love sent our way. It means so much! Mental illness is such a lonely path. If we talked about all of our problems, that have been high intensity for at least the past 4-5 years, we would be the dreariest people in Texas. So, Rick and I keep most of our problems to ourselves (except for close family and 1 or 2 friends) and have found ourselves very withdrawn lately.

Besides keeping you informed about our family's journey, I hope that each of you learns at least one thing about families living with mental illness! My son is as sick as someone with a life-threatening disease. In fact, his very life has been in danger and that's why we took him to the best place we could find. However, many people just don't think of it this way and don't want to talk about it. I am determined to be different.

I am NOT ashamed of my kids' diagnoses. They are types of brain disorders, which are physical in nature. My kids are not behaving in this way because they want to. With brain chemicals all out of whack and having a brain that is not typical (better word than "normal") in its wiring imagine how you would feel. My kids suffer a lot and, in turn, act out, which makes mine and Rick's life unbelievably hard. My kids see their friends, what limited ones they have (takes an extraordinary young person to stand up for and be there for them), going off to college or being very successful in school, being invited to all kinds of things, watch them have cars, dates, and most importantly, pride in who they are and a bright outlook on their future. We want that for our kids, just like you, but so far that has not really happened.

Please don't think I'm incredibly bitter. At times I feel a little bitter, more like envious of our friends' and family's more typical family lives. I also know that many of you have had no picnic raising some of your kids. I try to stay positive but sometimes it's hard when the only good thing going for us is that a dr. is on our insurance or " at least he got one of the best doctors in the hospital."

Is it so wrong to want more? Is it bad to not want our kids to do therapy and follow ups for much of their adult lives? I don't think so. It's also ok if we would like to spend money on family fun things, instead of private school tuitions we've paid since 2005, therapy for our whole family several times a week, medication co-pays that are huge because they each have 3-4 meds, and so on.

I'm so sorry to dump on you like this. This is just NOT the way I pictured my life. Watching my children hurt is every parents' nightmare and we've been doing it for over a decade.

I would like you to see the many blessings you have in front of you, that maybe you are or are not aware of. Be grateful for having to deal with your kid and his/her many after school activities. That means they fit in and have things to look forward to and be a part of. Be grateful for the busy times when your child needs to be at 3 birthday parties all in one weekend. That means they have many friends and are accepted socially. Be grateful for late curfews, car wrecks, progress reports and Homecoming/prom drama because that means you're dealing with typical teenage issues. I know I'm happy for you! I really mean that!

I promise I'll be more upbeat next posting. Pinky swear!

Love you all and thanks for "listening to" my crap. I needed to get that out, I guess. Thanks for the support, messages, texts, etc. They've really helped Rick and me during the last several days. If you want, please try to comment here, rather than on Facebook. I'm trying to keep my FB postings drama-free and a bit more private. I really appreciate that.

Beth <3

Talk to My Heart!!

So, our family could use some extra prayers right about now. Tomorrow, Rick and I will face a very difficult situation; leaving Josh at a residential mental health facility in Utah. My poor sweet boy has gone through the wringer and he needs more help than what we can provide.

Let me start by telling you that I asked Lauren and Josh if I could write about these issues and they graciously gave their permission. I'm just telling my thoughts and feelings, but it's about their journey, which is not easy. I'm very proud of my children and how they deal with these serious issues.

Have I told you lately how much mental illness sucks!!!

Josh has not been doing well for several months now. His mood swings, depression, coping skills and thought process are out of control, leading us to have to admit him to a hospital for 8 days. God bless him, he worked his tail off in there and made real progress, but not enough to keep him safe and on an upward trend towards a regular life.

Through our wonderful doctors at The Tarnow Center, we have contracted with an educational consultant, whom will work with us over the next year to get the best care for Josh. Right now this means this residential facility. It's not a hospital, but a secure home setting with only 16 beds. Josh will receive intensive group and individual therapy, as well as have his educational needs met with an accredited program that meets his learning differences. Oh, did I mention snowboarding and hiking!! There are some perks!

Josh's length of stay depends on his progress and, much to our chagrin, what the insurance co. will approve. The typical length of stay is around 3-4 months. We'll have weekly staffings with Josh and his therapists via Skype, be able to talk to him on the phone and visit him at least once a month.

It's just not enough for my hurting heart.

How do I say goodbye tomorrow? How do I turn over my broken boy to strangers? How will he cope? Will he be scared and I won't be there to comfort him? I've only cried twice so far, and I pretty much did everything possible to squeeze back the tears, for fear that if I really start crying I won't be able to stop. Josh, and maybe Rick, is taking cues from me on how to deal with this seemingly impossible, yet necessary task. I can't fall apart yet. Too much to do!

So, I sit here in a hotel room in Salt Lake City, after a whirlwind of planning, completing forms, buying REAL winter coats, looking at Josh sleeping for the last time for a while. It's all happened so fast. From the time we made the decision to now has been 5 days. Good thing, because it hasn't left me much time to cry.

Josh has taken this move quite well. I'm really proud of him! He was a bit taken back at first, and took out his apprehensions on what he could and couldn't bring from the packing list. No t-shirts with band logos (what, no Beatles shirts!!!)and no iPod is hard for him, as music is very calming, but they have allowed Josh to bring his acoustic guitar. Thank God for that! Seriously! He started expressing his fear of going a little yesterday and all I can do is say "I know, honey. We'll be with you every step". I know he's freaked out because I've gotten lots of hugs and he's even held my hand a few times (his decision). BIG sigh!!!!

This is hard on Lauren as well. Hard for her to process it all and cope with her feelings. She is with my sister (thanks, Susie!), who thankfully came out to pick up Lauren so we had one less thing to manage. Watching them say goodbye was ... Ugh. No crying now!

We check in tomorrow at 9:00 am and we'll see what awaits us. I'm anticipating I'll be returning to the hotel with puffy eyes and a red nose, but that's a given. I KNOW we are doing the right thing for Josh and that this is the RIGHT facility for him. I just feel it. All Rick and I have ever wanted is for our children to lead healthy, productive, meaningful lives while managing their mental illnesses, as they will nned to for the rest of their lives. Just what all of you guys want for your kids, hopefully without that last part. Can I tell you again that mental illness sucks!!!

These goals for our son are only reachable by taking this path right now. I know that. Someone just tell my heart, ok?