Julian and Quinnlin dressed for their Father-Daughter Dance

As a daughter with a daughter I love to watch their relationship grow. Because I know that with each word said, each hug delivered, Daddy is instilling how we want a boy then a man to treat her; with respect and concern and love and consideration. Always hoping she believes that she deserves the best there is to offer and not settling for anything less than the man her father is.

Thanks Auntie Carol for the styling of the daughter of this duo.

Gage was overtired Sunday due to an overnighter at the G’parents and the unfortunate desire to sleep with the dog because said dog keep him up in various intervals throughout the night. “

Which is fine, really is it, except when it’s not fine.

Gage loves his sleep, always has. Yes, it’s true, hold on here…WE SLEEP TRAINED HIM when he was a baby (can’t use that excuse for his behavior since we also sleep trained Quinnlin) and happy we did. We’re routine people, and more so when it became apparent that Gage does better with a routine he can depend on. So that broken up sleep on Saturday night? It messed with his attitude as it does with most of us when we are lacking good sleep. Quinnlin also had her share of attitude problems because of a weekend camping trip for Girl Scouts but again, with the tiredness.

Sad thing  is that it carried into Sunday afternoon. The kids had play therapy (started back up for Gage and Quinn’s first appointment) from 1-3 and after that the attitude problem didn’t improve for him. So around 5:00 when I realized it could escalate into hell I decided to get both the kids into bed early. Like early, early. We moved our evening routine up nearly 2 hours by having dinner at 5:00 and in bed by 6:20.

Gage asks, “Why is it so light out?”  Julian replied, “It’s that time of year.”  No, he can’t and doesn’t really pay attention to time…we like to say that is ONE THING IN OUR FAVOR with a kid with developmental delays.

Sadly the early bedtime didn’t help for all of Monday. So the end of the day he was having trouble with frustration at a hard (for him) task and the shutdown began. Monday evening wasn’t much better so there was a shutdown during homework of which involved him having a mini-meltdown (honestly, compared to you know, a MENTAL HOSPITAL BREAKDOWN ADMITTANCE, it was a walk in the park) and me trying to talk to him, put him in time out, and well, it didn’t go well. Not at all.

Well-rested meant that we should have seen improvement but Tuesday brought tiny shut downs. Luckily I had an appointment with our behaviorist for a Gage Refresher! Where  the good doc reiterated and reminded and confirmed and validated me about ignoring the bad behavior. When he shuts down it usually involves him running to his room with a trail of destruction on the way…shoes thrown, chairs tipped over, yelling, crying. So in discussion with the doctor we decided that when this happens WE WILL NOT follow, talk, try to reason, punish or anything — this means NO REACTION unless it is true aggression. This goes against every parental muscle, let me tell you. We decided together (the good doc and I) that these shut downs and running away are kind of like time outs anyway. So we’re just not going to call them that to him (cause he will not sit in time outs anymore). It’s like our secret. He storms out, it’s a – self imposed – time out.

The important part of this secret is to know that we have to come back to the task at hand; to the thing that set him off in the first place. Which on Monday night the shut down lasted about 20 minutes, then we got back on track and finished what we were doing (draft for a book report) and we had a good evening.

Today after school he worked on his computer homework (online) and we started on the final of the book report there was an incident. He and Quinn got into to words, a pencil was thrown, a stomping off that involved a chair pushing over and plant leaf pulling and up to his room he went. I did not say a word, just looked at the clock and started my 5 minute secret time out and waited.

Then I said, “You ready Gage? Because I’m ready for you!” Imagine the happy place inside me, where that came from.

And it happened. He sat back down, calmly, not sulking and worked for nearly an hour on writing, which is one of his many challenges and has cause many a shut down. Not tonight though. He did some of his best work and he was proud of it. He also did a project (that involved writing) for scouts. That doesn’t happen very often and it was nearly unbelievable. Today we also happened to tweak a med (+) so I don’t know if it was that or how we are handling the shut downs, but it was so much better.

Post shut down, an evening of typical homework and cooking dinner and laughing? Well, that’s what I thought it would look like before I had kids.

I know it sounds to the parent with average kids like this is a small thing; our 4th grader completing a book report (modified to be easier, even) without tears and yelling and whining between us and him but it really is remarkable. I feel like new meds and tweaks in meds and more calmness is bringing more calmness. He’s not functioning like a typical 11 year old (obviously) but he is functioning better.

There is a calm in the storm and I am grateful for it but I am not stupid enough to believe that this is our normal and it may never be, but I will take it for our normal today.

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?

————–

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

————–

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.”

————–

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!”

————–

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