Gage had a horrible day. The babysitter said that in two years, she hadn’t had such a bad day with him. Timeouts barely made a dent and just seemed to fuel him on.

By the time I made it home, he was in full performance bad attitude. Some of his behaviors alone weren’t anything out of the usual (sad to say). It was altogether the behaviors that posed the real problem. Disrespectful, destructive, out of control.

The next few hours that ensued were nothing short of a disaster from all parties (well, except Quinn, who really was an innocent bystander). Timeouts, his yelling, our raised voices. It was ugly. We talked about the reasons why he might be feeling badly and there was a lot of crying with half answered questions.

At 8pm when I went to get meds ready I realized a bad mistake. Gage took his night meds during the morning. That didn’t impact his anti-rejection drugs, but it did impact his behavioral (concerta) and his antidepressant (zoloft) med, plus he took melatonin, which helped him be calm during the morning hours with the sitter.

Julian was upset and had to step outside. Tears were shed. I went upstairs to let Gage know why he was so out of control. He was in bed crying uncontrollably. I told him what happened and asked him to come to me and we would cry together. Because it was a bad day. And while he is responsible for his actions, we knew why he felt out of control. That daddy felt terrible about him not having the right meds, but we’re human and we make mistakes. But as a family we would get through it and tomorrow will be better. He let me comfort him by holding him while he was crying and I kissed his head. Which he never lets me do. So I guess if there is a silver lining…

“Tomorrow will be better Gage, I promise. That is the good news about tomorrow, it will be different and can be better.”

“No it won’t.”

“Yes it will. Because you will have the right meds and they help you. But you know you have to tell me when you feel out of control like that again, okay?”

“Why did daddy mess up my meds?”

“Well, sometimes we make mistakes. We’re human. All we can do is try to make it right with the people involved, like you and Quinn. Both of you had a bad day, you know.”

And then we cried a little more and then Gage and Quinn saw Julian cry too, and it was a cryingfest that left Quinn wondeirng what the hell happened to her family.

So that is how we moved on from today. We cried and then we laughed a little bit, too, about how adults make mistakes too but how we need to own up to them and tell everyone involved we’re sorry. Gage let me say a little prayer with him because he was having a hard time letting today go, saying “I can’t stop thinking about today to so I can go to sleep.” So I prayed for him to only think about fun things like trees and poptarts and fixing things and taking them apart and of bottle caps. And he let me hold his hand the whole time.

And then we will wake up tomorrow ready for the new day.

We know Gage can be hard to be around sometimes. He can be inappropriate in what he does and says. He can be destructive and he doesn’t always do the right thing.

But he can also be charming, funny, sweet and engaging.

Unfortunately a lot of people don’t always get to see the nice side of Gage and sometimes they don’t even want to look for it. That leaves us with a lot of people in our everyday life who don’t like Gage or care to be around him.

One day Julian was nearby keeping an eye on Gage, as we often do, and Julian heard a person saying something about Gage to another child. Julian asked this person if they were talking about Gage, they said said no, and got in their car and left. Then the adult came back a short time later and told Julian that they had lied, felt very badly about doing it, but yes, the conversation earlier was about Gage. They felt bothered about the incident and decided to come back and apologize. For which I have a lot of respect, honestly. I have a feeling it just bothered them though that Julian overheard it, not that anything negative was said.

Sometime later I saw this person, who I had politely acknowledged over a few days and they approached me. Really, they didn’t have to, I had just made a mental note to be extra attentive of Gage if they were around. But this person came up to me and said they were sorry for what had happened and that they actually had a soft spot for Gage. They just hadn’t realized it was Gage when Julian overhead them.

The conversation this person and I had was uncomfortable because I had to tell this person many of type of following statements…

“It’s okay, we know a lot of people don’t like Gage.”

“It’s fine, really, we know a lot of people don’t know how to take what he says or does.”

“It’s just a part of raising Gage, realizing and accepting that a large majority of people don’t like him. It’s a part of our everyday life, so it is something we are used to.”

“We understand that you may not like him, it’s okay, really.

“I accept your apology, and I appreciate you saying something.”

“We understand it’s hard for people to accept him. This just goes along raising him.”

“We know that generally people who aren’t close to us do not like him.”

“I don’t know if you know, but it’s been a really hard year for him…blah, blah”

This person was visibly upset and said they didn’t want to be that type of person. Unfortunately it happens. This person just happened to be called out on it and had to face their own judgmental attitude, which isn’t easy to do.

But it’s the reality. Human nature. People are judgmental. They see Gage doing or saying something he shouldn’t be and they judge. They judge us as his parents and they judge him. They pull their kids away from him and they isolate him instead of interacting with him in a way that helps him learn. And Gage’s world is just more limited and feeds into the cycle of isolation which has limited friends and social interaction to begin with.

But, having said all of that. I understand. I’m just sad that we have to know that people don’t like him, or that people don’t give him a chance. And what’s more, for the record, when your kids are having medical, social, and emotional problems you don’t need people to shun you - you need more people to embrace your family. You need, most especially, more people to embrace your child.

People really are missing something special when they bypass getting to know Gage. When he’s engaged, as he is a little bit more these days, he’s full of ideas about inventions and he sees the humor in life. He’s a mischievous thinker as well as problem-solving. The few friends that he has really like him. They think he’s nice and funny and wild and they like being around him.

I wish more people did, because honestly, it’s hard. It’s hard emotionally to face that your kid isn’t liked. But it’s not the end of the world. Gage is alive. And slowly but surely he’s engaging with life again. I’m grateful for his life. The hopes I have for his life involve a greater self esteem, that he will have a few best friends through life, that he graduate high school somehow, and find a job he’ll be happy with and that has insurance benefits. I hope he won’t kill himself.

See why I can’t spend too much energy on worrying if people like Gage? As a family we gravitate towards people that see the spark in him without us having to point it out. And I’m forever grateful for those people - the few parents that encourage their kids to accept and have friendships with Gage, adults who are in his life who appreciate him, the friends of ours that accept him the way he is, without judgement. You know who you are.

When you are caring for a couple of sick kids it means you have to be in front of a lot of health care professionals. Doctors, nurses, assistants, insurance staff/accounting, technicians, clerks. You come into contact with a lot of people and a lot of personalities.

On any given week we’ll see 15-20 people in the regular care of Gage and Quinn. When the situation calls for more care (um, like, you know, a KIDNEY TRANSPLANT) there are just more people (and paper work and tests and results) to navigate and manage. As in life, you don’t click with everyone you interact with on a daily basis. People rub you the wrong way (you rub people the wrong way) and they are dismissive and insensitive. Some are dismissive in a way that is condescending. Which can be both infuriating and eye-opening. Because that probably isn’t going to change on the 2nd, 3rd or 20th visit so it’s best just to find a way to deal.

What I want for one of my kids doesn’t always line up with what their health care providers believe is best for them. And that’s okay. But it’s not the last word.

That’s why they invented The Second Opinion.

It doesn’t matter what the issue is; it is your business, your right and your responsibility to get your questions answered. That is why there is a 2nd opinion.

Getting along with everyone, everyday just isn’t possible, you know? Sometimes you can’t change providers; the options are limited in your area, your hospital or specialty and you have to work with who you’ve got. It goes back to intuition. Follow your intuition. Always.

For my kids, it’s my responsibility to make sure I follow my intuition no matter who is providing care - from front office to doctor. Sometimes I have to be creative in managing all the situations. Sometimes it is okay and right to push back. And you know what happens? People get pissed off. And you know what else? I’m okay with that. Because when I’m tucking my kiddos in bed, never, anywhere in my thinking about the day behind us is one thought about who I might have pissed off while being their advocate.

But it’s not just the kidneys around here. We’ve got mounds of paperwork, new doctor appointments, old doctor appointments, behavior mod to implement and well, we then have living with Gage, which has it’s own set of newness (not always good newness) everyday.

And then it doesn’t. It gets old, too.

- We found a group therapy situation for Gage that we’re going to try. It’s for boys, 3 hours a day, for 10 days. 6 boys. “Group Camp” we’re calling it. It’s to work with social interaction, boundaries, expression of needs in play/communication. We just decided we needed to mix it up a bit. The cost is $860 for the session and it is out-of-pocket.

- Gage has been doing better since school is out. For Gage better means he’s just Less Gage Amped Up. He’s still a challenge, but he’s less of a challenge. He was downright nice for my birthday even. He gave me a card, too, that didn’t involve a picture of him on  a train running me over.

- I realized I never really backtracked and talked about Gage’s weighted blanket. I bought one from www.beanblanket.com and he loves it. I paid, with shipping, $100. It’s like the medium size, so less than a twin bed but it fits him perfectly and stays on him all night. I am sure in about a year it won’t. This blanket weighs 10lbs and goes where Gage sleeps. Family or boy scout camping? Yup. Traveling to see the nephew in Nashvegas? There too. A reader (JM can I out  you?) pointed me in the direction of it this year because of Gage’s sleeping troubles and I’m so grateful. He does sleep noticeably better. And in case you think we are lacking wildly the discipline of a good sleeping schedule, you’d be wrong. We’re all about the routine around here. Same time, same routine, same toothbrush, same prayer. The blanket helps settle him. Actually, we should all have one.

- Gage still is hanging on to Boy Scouts. He’s not too thrilled about many things these days, but doesn’t fight it. Last week for the most part he played alone in the corner of the yard when 30 other kids were running around but he didn’t seem unhappy. I think the alone playing is many things, self confidence, too much stimulation and that was his self soothing, one way to stay out of trouble.

- Gage is struggling with piano. Not the playing part but the going to lessons and practicing part. Normal or not? I sense many kids don’t want to practice, but we’re seeing meltdowns because he is frustrated when he makes a mistake. We can’t seem to help him understand that practicing is all about making the mistakes until you learn. Last night I found the three piano recitals he’d done and he was impressed and proud of what he could play now vs. Mary Had a Little Lamb on the first recital a year ago. So sad the level of his low self worth. Hearth breaking.

- We love Gage’s rock climbing instructor. She’s a trained Outward Bound and deals with special needs kids, apparently particularly boys with low self-esteem. Gage is quite a good rock climber and without our prompting she told him the other day that during camp this summer she’s going to need help with the other kids because he knows a lot more then them about tying the knots. Did I mention he’s a little like Rain Man with knots? We just bought him his very own harness (on sale) and we’re about to get him climbing shoes.

- Gage’s kidney function is great. In our desperation a couple of weeks ago, we had the thought (and one of his teachers asked about it) that even his kidney might be failing. It’s not, much to our pleasure. Because really, that would be too much. Numbers are stable, thank God.

- Because all of the immunosuppressants he is on his body can’t fight warts and one of his knees is covered with them. We’d been going almost monthly to the dermatologist to fight them with freezing but about a month ago he kind of lost it in the office and we had to hold him down to do the procedure (hate, hate it) through screams, tears, protests, so I asked the doctor (in front of Gage) if we could fight it topically for a while to keep them in check and she researched a new topical drug (she’s always concerned about body absorption because of the new kidney) and she found one that we had to special order - for $70 for one small syringe - and much to my delight it is working. Three treatments and they are much better. I think it we keep it up this may actually work. This is one small victory for all of us - it shows that when possible, he has a voice about treatment and that as his mom, I’ll keep looking for new ways for treatments as his advocate.

- We’d recently upped his anti-depressant. I have no idea if it is helping or if the end of school had an impact, or his relief at passing 3rd grade is the factor, but he seems a little bit better. Because there is so much with Gage (mental, physical, developmental) it’s always hard to judge the impact of behavior mod or meds.

My boy is complicated. But he has a great smile (when he occasionally does it) and he’s smart and I love him. One day I hope we’ll see the real Gage again. Because it’s been a very long time.

And I miss him.

We’re in the throes of the last week in school. Yes, it’s true, a friend said May is the new December. She was right.

- Gage passed 3rd grade. This is a testament to the resiliency and determination of his teachers - so many of them. Our public school surrounded him with care and concern this year - the year he could barely cope with life and they literally held him together. They held him together with every resource they had and I’m forever grateful to them.

- Yesterday proved to be dramatic. I spent most of the day helping a family member in crisis. It was not fun. Not one little bit.

- I am busy making a cazillion teacher’s gifts. I know. It’s a curse, sewing is. I’m ruined for life because I know how much it costs to make something vs. buy something. I’m probably saving something like $300 making their gifts. Problem is I just started making them Monday night.

- We’ve had a consult with a psychologist with a summer program. We’ve signed Gage up for a 2 week group therapy session with 5 other boys. They will work on social interaction, peer relationships/boundaries, self confidence and self esteem. It sounds like a good program and we’re happy to switch things up a bit. Since HE DOESN’T HAVE TO GO TO SUMMER school, his schedule just opened up. Big apology to Gage’s teachers who have to fill out a long questionnaire about Gage. Yeah, you know they were thrilled to get that from me 2 1/2 days before the end of the year.

- Speaking of the end of year…our beloved head of the special education department at the kids’ school is retiring. We’re very sad to see her go. She’s always loved Gage and wanted what was best for him. I am sure that she loves all her kids, but I kind of believe she loved Gage the best. At least that’s the gift she’s given me. I’ll always believe that how she treated him with firmness with a gentle nurturing spirit is why he’s been able to hang on each year. I think too, because she is accepting of him that has led others to have the same attitude towards him. I’ll be forever grateful to her for her tenacity with him and the way she dealt with us. I’ve always appreciated the way she celebrated his successes, even minor, and how she played up to his abilities and uniqueness. And boy is he ever unique. I tried and tried, but I couldn’t talk her into staying there until Gage graduated 5th grade.

- I’m very behind on paperwork. Work and volunteer. I am working on the Walk for PKD right now. So if you know any corporate sponsors (in Atlanta or out) that want to help us with funds, please send them my way! In lieu of that, you can form a Gage and Quinn’s Team in your area if you are not in Atlanta walking with us. Don’t think I won’t bug you again about this for the next several months.

- Quinn is moving onto 2nd grade. And have I mentioned she is a fantastic reader? A little bit slow, I mean that’s just Quinn, a little slow in everything she does, but she is a great reader. It’s no longer tiring to listen to her read a book. I’m happy to report it doesn’t put me to sleep anymore.

- Chef Marla at Babette’s Cafe had a little Wine Tasting fundraiser at the end of April and I’m just getting the rest of the fund to mail to the PKD Foundation. It’s was a successful night. We raised $1405 for PKD research. And we just drank wine and ate. That’s awesome. And she is too. She’s a wicked Scrabble player in case you didn’t know.

- A really nice person noticed that Gage was having a tough time (understatement) and sent 2 couple of boxes of oreo cakes to him at school signed, “A Secret Friend.” He was thrilled apparently and really cute making sure everyone got one. It was super nice of Debbie - she’s not so secret to us. Thanks Debbie.

- Happy to be winding down from all the activities and get into the lull that is Summer. It goes without saying the kids are too.

- On a kidney note (can’t remember if I just Tweeted or Facebooked this) but our QPD#1 is going through the serious 2 day testing next week and we should know in June if she can donate. Please send up some good vibes that she will sail through testing and be approved. We’re trying to keep our expectations low, because as you know, that is how we make it thorugh the long haul.

We are in crisis mode around here. Gage has been having trouble and we are trying to figure out the game plan for the next however long. Until the next time we need a new game plan.

Gage is complicated. He’s got issues on top of issues and we are constantly sorting through them all. Gage has had developmental problems since about 8 months old. For nearly 10 years he’s been chasing after a goal. Always behind. Goal after goal. For 10 years now he’s been evaluated, tested, pushed and pushed. We’ve fought for nearly every step walked, every letter on the page, every word pronounced properly, every single item learned. We, as his parents have fought hard for his learning. But he had to do the work.

And then on top of that? He had to fight to live. Years of testing and monitoring and medication. Years of his body giving up on him and feeling sick. For an unknown amount of time he couldn’t concentrate on much so he wasn’t able to learn as he did before and he struggled more. Then came complete kidney failure, near death to dialysis and treatment until a transplant, for which he didn’t have the maturity to deal with the emotional component.

It’s no wonder he’s having trouble coping with life. The health and developmental odds haven’t been all that kind to Gage and he’s working through the issues associated with the hand he’s been dealt. We all are.

We navigate each new problem with a best known solution at the time. I am constantly trying to figure out how to deal with the new problem that arises from Gage’s behavior. That includes just about every behavior plan on the planet, a couple of meds and an array of tactics that involve more discussions and tears and research than I care to recall right now.

Gage is the way he is because he just is. He’s the way he is because of many things. A mixture of how we parent. A mixture of the experiences he’s had in his 10 short years. So when people judge me and then email me about my parenting techniques, I get a little pissed off.

I’m extremely sensitive about parenting Gage. I sometimes blame myself, but really, that’s just because that’s what parents do. I don’t really think that I’ve messed Gage up with how I parent. Gage is just Gage. It’s my job to always try to reach the real Gage and give him a voice.

Do I do things wrong sometimes? Sure. Do I second guess a situation with Gage and his behavior? Of course, what parent doesn’t? But I know Gage the best. Not you. So you have no right to tell me that Gage is lacking discipline. For starters, it’s not true, but the bigger problem is you have no idea what is involved in parenting this child and what works and what doesn’t.

So shut the hell up.

Just 24 hours ago I had a call from the school. It was about Gage and he was being, well, Gage, but Gage revved up. He was being destructive with school property and disrespectful and could possibly be lying about a pretty serious incident.

In all honesty, he’s been on his way to this for the last 4-5 days. He’d been rough on Tuesday morning and the day proved that he couldn’t get it back together. So yesterday, while I was sad and disappointed for Gage, I wasn’t all that surprised. Suspension was discussed, but you know what? For a boy who hates, hates, hates school right now? That would be a perfect end to a horrible year. Get to spend your last week at home. Turns out for Gage that would be a reward. The school is very supportive and know we are fully engaged in the situation with Gage and probably somewhat give him/us some leeway. Which is the right thing to do in the case of Gage, but also very appreciated by us. Gage just can’t be “rewarded” with time out of school.

Julian was traveling and it was going to be a jam packed day of a psychiatry (timely, right?) appointment and piano for Gage, swimming for Quinn, anyway, so what’s a little school crisis?

Gage was pretty much shut down the entire appointment with the psychiatrist. He did answer yes and no questions with a nod. All we know is that he is angry and sad and doesn’t know why, but he feels it in his stomach and brain. And he looked sad. I could feel his sadness and frustration in the room. This is probably one of those cases where way back when in October she said, “it’s going to get worse before its gets better” things, or it is a manic-like state consistent with depression. But she was quick to say she didn’t think he was bipolar (yet) but that would be something she’d be looking for given the situation. We’re also to be looking out for him cutting/hurting himself — he’s a prime candidate for that, too. She hopes a bump in the antidepressant will help and she’s hoping he’ll settle down in the next week to two weeks.

On a positive note he did let me lay with him in bed and we talked for a good long time. While he listened intently I told him that I will love him always, no matter what, and for me that meant that I will never, ever give up on helping him through his anger and sadness. That as a family, we’d stick together and work it out - whatever that meant. It meant that we will never, never stop looking for answers so he can return to the happy Gage he once was. I can tell you that was the most he’d listened to me yesterday.

I can’t say I ever saw mental health issues a huge part of my parenting challenge with the kids after they were diagnosed; I just thought I had to keep them alive. Of course, after we began to unravel this tangled mess that we know as Gage’s mental health, it really makes so much sense, given his personality and medical situation. I’m not surprised now that’s for sure.

Just an example of that…when the doctor said, “Have you noticed any cutting his arms, legs…” I responded, not back with a feeling of shock, like any parent would, but quickly with “No, and I’ve been really looking for that.” That’s just downright cynical, right? That I’m anticipating Gage to be in the small majority of male kid cutters.

With a kid like Gage you really have to be looking for the worst hoping for the best. It’s a defense mechanism for me just to cope. If I didn’t try to stay ahead of the worst thing that can happen, I’d be crying in a corner somewhere as it happened.

Just in case you needed to know why my marriage is strong…

On the phone returning from Gage’s (kidney) clinic visit today I was on the cell with Julian and we were speaking in code because Gage was in the car with me, which often sounds like this,

Julian: “So, how is he today.”

Me: “Well, you know.”

Julian: “No, I don’t.”

Me: “Then guess.”

Julian: “Bad?”

Me: “Not heinous at least.”

Julian: “See, if we just keep lowering our standard, then it won’t look so bad.”

——————

And that my folks, is how we are entering our weekend.

Gage had a rough day. It started from the time he woke up and continued through school. I am sure we’re headed for a great evening together. Sigh.

I got to thinking about all the issues that Gage has and how many labels he carries with him. Hell, no wonder. These are in no particular order. And in fact, the importance of dealing with them changes daily, as does my son’s triggers and behaviors.

- Oppositional Defiance Disorder

- ADHD

- Clinically Depressed

- Post Traumatic Stress Disorder

- Low Self Esteem

- Self Hatred

- Suicidal

- Learning Disabled

- Polycystic Kidney Disease

- Other Health Impairment

- Speed Delayed

- Cognitive Delay

- Transplant Recipient

Some days it’s hard to see Gage’s good points because he so blatantly shows the not so good side. Today is one of those days. When I dropped him off at school (late due to blood work) I said, “I want you to have a good day even though it started out kind of rough.”

“I know that’s why you hate me.” He says.

And that’s how his day began.

Gage is a heaping bowl of destruction these days. We’ve noticed (just in the last two weeks) the listed items were damaged or destroyed and I am sure the list is not complete.

- Scissors

- Waterford crystal clock

- sewing machine

- door lock

- side trim on car (2)

- cut a hole in an outfit of his when he was a baby so it would fit on his stuff animal to account for a tail

- yard tools

- broke light bulb and poured water into it (WHILE STILL IN THE LAMP)

- swing

- door lock

- shower head

- helmet

- a book

- door hinge

- computer (although it’s old so we can’t completely be sure it was Gage)

- pair of tennis shoes

- a phone

- sliced the seat cushion of a dining room chair.

I don’t know if I’m happy or pissed. On one side of the argument it’s expensive and time consuming to repair items. On the other side, it is kind of cute because in a lot of the cases he is just interested in how things work and that leads him down a path (or 10) that are destructive.

You might think that we should watch him more closely, but honestly? Some of these things were broken in something like two minutes. While he was on the way to the bathroom. Gage doesn’t get hours on end to wander into destruction over time. It’s quick, decisive.

And expensive.

Since Gage’s mental health decline last year it’s been difficult to watch him not enjoy life. I mean nothing. Not friends, not outside, not playing with toys, nothing. He didn’t go outside for months beside to school and commitments. He quit climbing trees. He quit playing in the dirt and the creek behind our house.

While he’s gone from the crisis stage of wanting to kill himself - and trust me, we’re happy about that - we are a long way from him being joyful. Truly happy.

Jody and her family came over tonight for dinner and we looked through Gage’s photo scrapbooks. We both kept noticing photo after photo Gage’s genuine smile. Sadly, we were only looking at photos before his depression and PTSD. Occasionally and only if I am really looking can I see the happy boy from the past. He’s so different. I hope one day we can see the boy more than occasionally. I hope, I hope.

Gage’s attitude isn’t stellar for much. Except maybe taking apart a broken electronic or some good tree climbing. So, I’d been telling Gage that Jody was coming over, trying to get him to warm up to the idea. Cause he’s not necessarily warm around anyone these days and I was hoping he would be with her. Right before they arrived he ran upstairs and came back down and wrapped up in a blanket in the chair, which he often does. I said something to him and he leaned over the chair and lifted the blanket to show me The Shirt. The shirt we gave him the morning that Jody came to see Gage the first time since his transplant. It says I (heart) My Kidney Donor. He smiled briefly. I made a big deal about how nice and thoughtful it was of him and that I knew Ms. Jody would love that he had it on. Bigger than wearing the shirt was that he actually had the thought to put it on.

Gage just doesn’t do thoughtful things. He just doesn’t. Or if he does, they are so few and far between that I forget them. So every once in a while he does something like this and I think to myself that he just might be okay. He might get better one day and live joyfully again.

I hope. I hope.