Often times when I am joking about the ridiculousness of my life Dawn tells me (sarcastically, cause she’s good like that) I should just do a gratitude list, she says that activity will help me look at the world differently, peacefully even. Well, Dawn, this one’s for you.

I’m glad that a kid didn’t throw up their anti-rejection meds today.

I’m glad I didn’t have to hold both my kids down for lab draws today.

I’m stoked that neither one of my kids said they wanted to kill themselves or die.

The school hasn’t called me in over two weeks because one of my children were doing something unbelievably bad.

I didn’t say kidney failure the whole weekend relating to any kidneys in our house.

Children’s Hospital is billing Medicare for $50,000 in medical expenses not paid by our insurance for Quinn.

Gage’s twice-a-week tutor (who came out of retirement) is picking up Gage from school today and has agreed to go to his IEP annual meeting with us on Friday.

Gage only has 3 appointments for mental health, one for medical health, and two for tutoring this week. Quinn only has two!

I live a (mostly) stressful life, but don’t we all? And we all deal with it differently. One outlet for me is creative writing (in addition to scrapbooking, movie-watching, altered book creating) and so I’ve started a new blog.

Launched just this week it features pictures that I’m drawn to for their vintage and mysterious (or funny, or strange or completely whacked) quality. I’m writing stories about the people in the photos. That’s right. I’m just making it all up.

Sometimes there is a clue about the date or name and location but most of the photos have nothing. They were found in junk bins at flea markets or boxes at an estate sale or eBay, as my last box was discovered. My sister gave me about 20 for my birthday after I told her about my plans to give old pictures stories. For the most part the photos are pre-1930s but some newer ones are speaking to me too.

I have no idea if the stories are good, but they are fun to write. And as Dawn points out it’s a little creepy because she reads them and thinks they are real. My sister, Pat, says they probably are real because dead people are speaking to me.

Like I don’t have enough people yammering inside my head.

Visit Vintage Photo Stories and comment people! Cause it’s your love I need.

Just a little preview of a picture of a story I am working on now. Meet Nora and Opal.

I’m about as shocked as anyone on the planet that Gage was laughing and smiling and joking in the back see of my car on the way to an appointment this week. He and his BFF Laura were giggling about songs on the shuffle. Genuine giggles. I honestly nearly cried driving down the road, eyes fixed on the rear view mirror, afraid it was fleeting.

I had completely forgotten what his giggles sounded like. So at a stop light I took this picture because I wanted to capture it so I could remember the next time things get bad for him.

A 20 minute car ride turned into a flash.

A flash of a memory of what it felt like to witness joy from you.

Missing until recently, happily accepting it back into our lives, but afraid to welcome it freely.

Your joy.

We will fight for it to stay.

Throughout the last two years as we’ve dealt with Gage’s mental health and the  4 years before that we dealt with his behavior, impulsivity and defiance we’ve come across a lot of terms to describe him.

A lot.

Probably 20 “labels” that speak to Gage and what he is like.

Actually more.

Since he was hospitalized for his mental break, episode, traumatic event, (whatever you would like to label it) we’ve been given a few more labels to toss into the mixing bowl (of crazy pie). I’m not comfortable stating what all of the diagnoses are right now because it’s too early into this next phase. And, since the 4+ mental health professionals don’t even all agree on a single diagnosis for Gage regarding his mental and emotional health why should we speculate?

We are doing the best we can for Gage. We’ve supported him through bad times, we’ve encouraged him with behavior modification, we’ve punished him, we’ve praised him, we’ve loved him, we’ve found professionals we thought/think can help him, we’ve changed whatever we need to when we needed to and we’ve loved him through it all.

When something isn’t working we change part of the equation and we try again. We’ve come down a very long path to his hospitalization. We didn’t just wake up one day and decide to commit him. We’ve talked about hospitalization more than once. One day in October I drove there for an evaluation with him but it didn’t feel right that day. The other times we’ve discussed it with one of his doctors, they didn’t recommend it.

I hate we had a reason to hospitalize him, but I’m so glad we did. He was safe for starters. And it meant there was one more way to try to help him. And when this new tact runs it’s course, there will be another and another. What we’re doing now with medication, therapy, patience, routine, play therapy, therapy and love is helping. Is it right? It’s right for right now. Because raising someone with mental health issues, is at best, a wild dance. Kind of like a mosh pit, the way we see it.

Whatever Gage has, or is, or does makes him no less my son nor does it diminish my love for him. He’s not words on a page. He isn’t a bullet list of bad behaviors that equal one thing. He’s not a description of a new diagnostic criteria, either.

What he is is strong beyond my comprehension. He’s a fighter and survivor, even if it looks like he is cracking. He’s funny, smart, sad, complicated. He’s impulsive. He has little self-worth yet is proud. He’s blond and ticklish, and crazy about PB&J. He’s a dog lover, tree climber,  a long hair grower.

He’s my son. He’s not any one label. He is Gage.

Me: “What are we giving up for Lent?”

Julian: “Haven’t we given up enough?”

Me: “You mean like a normal life, money, time and travel? THAT? Is THAT what you are speaking of?”

Julian: “Yes.”

Me: “I’m actually kind of bitter about it.”

Julian: “Haha.”

Me: “I wasn’t kidding.”

Julian: “Oh.”

The dance of management of Gage’s mental illness/es has begun. Without the tools of imaging diagnostics, we’re unable to get the same answer from psychiatrists involved in Gage’s treatment and so we’re relying on intuition. On what feels right. This goes against J-man’s nature, but we’ve reached a consensus.

I won’t deny Gage is complicated. Which part of Gage is genetics, chemical make-up (either due to PKD symptoms, dialysis or meds that he’s taken all these years) or current drug interactions? We have no idea knowing and it is scary to think he may be on a drug he doesn’t need. I need someone who has seen a lot of kids. Really, really messed up kids. I need them to acknowledge that he’s complicated and I need them to believe in prescribing drugs (which honestly I think our current doctor has a hard time with) if they can (hell, even if they may) help him live a life with more function. So that whatever is going on with him doesn’t fight against him.

I fear typing hard on the keyboard to say that Gage is doing well. He’s participating and engaged, he’s doing better in school than last year or this year and he seems happy. It’s too early and he’s doing too well to discuss stopping or changing meds. It just is. Gage needs a break and we need a break. Because we know there will be another something around the corner and we have to get ready for it in the meantime.

We’re probably on the cusp of changing up some doctors/treatment approach. We’re going to add a play therapy session back (Gage requested to see her again, thanks for Sunday appointments) into the mix and we’re adding a tutor (started last week, came out of retirement to do it) and we’ll get talking with the behaviorist again. He’ll still see his cognitive therapist (which I think is good because I feel like now we have a better than average chance to make some progress).

We are almost to scared to believe it can be better. We’ve been living in such chaos over the past two years and most especially the past 6 months that we’re just realizing how truly horrible it’s been. We’ve been held captive to the thing that paralyzed Gage into living a particular way and for the first time in a long time we might be willing to sort of believe that it could be different. That is could be better. But even with that hope, we’re too scared to let go and truly believe.

Sadly, Gage remembers a lot from his hospital stay. He says it was “horrible” and that is nearly unbearable to hear. But he also acknowledges that he is doing better and he shakes his head in agreement that he is proud of himself. He doesn’t look so sad. He doesn’t walk around like he doesn’t care anymore. He listens to conversations in the world around him and he weighs in with an opinion. He’s playful again. If he is struggling we don’t lose him completely for long bouts of time, so he’s able to spring back pretty quickly from challenges. He isn’t completely shut down and locking out the world. He smiles a lot more.

He’s slowly but surely coming back to us; he’s in the dance again.

Yeah, so to deal with the stress of our son being committed we’ve decided to go all out with jokes. I know, it offends, but whatever, we can’t help ourselves. It’s ALL WE’VE GOT.

We spoke to Gage one night when he was in the hospital. He said a lot of okays and yeses and I hate this place! I said I love you, miss you, you are my son and you will come home. We were thinking maybe he would like home more now. We have to be better than a mental hospital, right?

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Julian: (committing Gage as he was about to go out of town) “This was a hell of a way to have a quiet weekend.”

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During my visit with Gage on the Saturday while he was committed (and still on “One-to-One” care)

Me: “How did you sleep?”

Gage: “I kept waking up because I had a guy staring at me.”

Me: “Was he reading or anything?”

Gage (chuckling): “No…he was just staring at me all night…it was very weird.”

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Quinn (while Gage was still in the hospital): “When Gage comes home, do you think he will like me again?”

————–

We’ve referred to the hospital Gage was in as: Mental Hospital, Loony Bin, Padded Room, Nut House.

Julian points out: “A lot like home.”

————–

Gage (on the food): “They don’t even have peanut butter and jelly sandwiches.”

Me: “Really?”

Gage: “I know! They want me to eat meat!”

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Gage (on his first day back): “There were a lot of teenagers there. And they are very loud. I heard them all the time.”

Me: “I heard you were loud.”

Gage: “Not that loud.”

————–

Quinn: “It is really quiet without Gage here.”

Me: “Yeah, it is.”

Quinn: “I wish it were louder, but not too loud, like Gage loud.”

————–

Gage (while he was in the hospital, on the phone one night): “I have to go someone else is calling me.”

Turns out that the nurse told Gage that other parents were calling other kids.

This is the silent half of the mutant family household. That’s right, Julia’s husband.  As I am sure the regular readers are aware, I am not a reader of the blog. My position is that I live it, so why do I need to read about it. But I do understand the need for the blog from both Julia’s and the reader’s perspective.

Although I am not a reader of the blog, I didn’t think that would prevent me from being a guest writer on Valentine’s Day, which by the way is cheaper than a dozen roses. Although I am not as talented of a writer as my wife, it allows me the opportunity to share my thoughts on this woman that is not only a mother and advocate for a couple of special needs kids, but is my wife, my lover and my friend.

Hallmark never seems to have the right card to say what I truly feel, so this year I decided to save my $5 and let the words come from my heart. It is sometimes difficult to express my thoughts for Julia because our life is complicated and for that matter, so is she. I consider myself one of the luckiest men alive to be able to share my life with her. When we met almost 20 years ago, we had no idea what our future life would hold.  It has been filled with lows and highs, tears and laughter, heartache and celebrations. These ups and downs can take its toll on a marriage. It takes patience, understanding, more listening then talking, a sense of humor and respect to get you through those times. She is a source of strength for me and I could not, nor would I want to go through this life without her.

I see her everyday loving, caring and advocating for our kids and still have the drive, energy and desire to share her story, experience and knowledge to help others. She spends late nights on the phone talking with parents, literally from all over the world, that have just gotten the news that their dreams of a healthy child has changed. She spends hours writing and blogging to tell our story not only as an outlet for her but to provide strength and encouragement to others that are advocating for their children. She amazes me every day with the depths of love, compassion and strength that she has.

So to Julia, my one true love, I wish you a happy Valentine’s Day. You are my Valentine everyday as we, side by side, deal with the highs and lows of life.

I love you.

Julian

Read the sign…carefully.

He’s crazy funny sometimes.

Maybe you know Just Me of Master of Irony. She’s been reading me for a couple of years. As I blogged about Gage’s behavior issues she said she could identify and so we became friendly and over time, I feel, friends.

The lovely thing about the living your life on the Internets you can meet people who can offer you support and advice and Just Me has always been forthcoming about her similarities with Gage’s behavior and feelings. When he was hospitalized she really reached out to me and told me that is was scary but that Gage most likely felt safe from the out of control feelings. She couldn’t imagine what it was like to go through from our perspective but she was certain that hospitalization was a good way for us to deal with the med changes and tries.

She made me feel better.

Then the public vs. private debate started in my head and she said for sure that I should go underground regarding Gage’s mental health. She didn’t want things to be as bad for Gage as it had been for her with people knowing. But the next day she reconsidered. She said, essentially, that if she didn’t go public and tell her story that it just perpetuated the stigma. She wanted to come out as a survivor of mental health illness.

I appreciate everyone who has paved the way in changing minds, but I’m especially touched that Gage has motivated Jen (I know, she has a name!) to share her story in a more public way.

She is my hero.