Gage had an awesome week. I mean, he had a day and a half that weren’t so good, but for Gage, trust me, he had a good week.

Remember the “He only tripped a deaf child” comment some years ago. That is the statement we use when we are trying to figure out if it was a good day for Gage, or just a good day for any kid. Mostly it’s a good day for Gage.

Tuesday we had Gage’s annual IEP  meeting and as usual the school has idea about how to help and manage Gage. They/We have tightened the reins, encouarged more positive feedback for Gage from the teachers, and working on getting the good messages to us when they do happen. So often, it’s hard to swing the pendulum back to talking about the good behavior.

A few weeks ago I confided with Gage’s play therapist that I was struggling with the PE teacher because Gage was really acting up in his class and I wasn’t getting any feedback from him. Turns out he wasn’t getting my bulleted lists and questions about how we might be able to change things. But the therapist pointed out that the relationship needed to change and that the teacher really needed to head that. So we made some recommendations and they seem to be working. At the end of each week, Gage is helping the teacher after school. Organizing, cleaning, generally helping. This is giving the teacher some additional to praise Gage for and it is helping re-build their relationship. He is also praising more in class and trying to ignore the bad stuff (if possible) instead of playing into Gage’s (very tiring) way of getting attention. In fact on Gage’s one not so great day this week, he only got a star for PE. When I told the teacher that he replied, “well, that works for me.” That made me laugh because I so understand it.

So, the increased meds and therapy and positive reienforcement, and management of the boy, the situation is moving from crisis to guarded. Because we know, at any minute it change.

But for today, there is enough in the good column.

2002? Quinn would have been just a year old and not walking. See? How my years and time markers just start running together? Yeah, she’s nearly bald. She was a year old.

Happy Halloween! This year’s pic ought to be fabulous! I have a sick child who was up all night vomiting (red back spider) and a wild child (Indy Jones, but wild and with a whip!)

• Gage and Quinn have had over 100 medical professionals and therapists that we’ve seen (or see) regularly.
• Gage has had 500+ therapies since he was 18 months old.
• Quinn has had her labs done roughly 50 times.
• Gage visited the hospital for labs about 50+ times the year after transplant.
• Gage’s transplant cost roughly $175,000
• Gage’s dialysis and catheters cost roughly $90,000
• Our insurance is $2,000/month.
• Quinn has had roughly 350+ therapies since 4 months old.
• Gage currently takes 5 meds, twice a day (except 2).
• Quinn currently takes 9 meds, twice daily.
• Quinn started using a walker at 14 months and used it for 14 months.
• Quinn’s meds cost us about $300 out-of-pocket each month. Plus courier charges, $8.50 a pop.
• Gage’s meds are covered for now. But at the three year mark will probably cost about $700-900/month out-of-pocket.
• Quinn and Gage have had 5 pairs of orthodics between them.
• The number of IEP education meetings I’ve had for the kids: approximately 50.
• Phone calls to doctors/nurses: approximately 300 plus.
• Lost sleep due to worry: countless hours.
• Jokes made at the kids’ expense: numerous.
• Dialysis treatments for Gage:73.
• Hours a week just planning for the kids’ health care and educational needs: 7

The list goes on…but I need to go make appointments for the kids for labs.

I missed another 27th and the chance to tell Jody thank you. I was traveling from Chicago, and falling in and out of non-deep sleep on a flight, and then I was listening to my kids stay up way too late.

I meant to blog that day and didn’t. Well, you can see I am full of excuses. But you can tell I am thankful for Jody’s kidney, right?

Because I am. And I think about your kidney and what it means to my boy at LEAST once a day. Even during the times he drives me insane.

Thank you, thank you.

Your kidney rocks! The kid where your kidney resides? Challenging, but still cute. And when he’s behaving enough to enjoy life, he’s really, really cute.

Me: “Hey! You know when we go to New York, they won’t let us off the plane until we sing The Song, right?”

Quinn: “Huhhhh? What song is this?”

Me: “New York, New York – you know the one…I want to wake up in a city that never sleeps…”

Quinn: “Why?”

Me: “It’s the rule for New York. We all have to know The Song.”

Quinn: “What if we don’t know The Song?”

Me: “Well, they won’t let the plane land until everyone on the plane sings it. It will just circle and circle around the air.”

Quinn: “Well, what…”

Gage: “Quinn, why do you believe it?”

Julian enters

Me: “Julian, will you tell the kids about how when we go to New York for Gage’s wish, that we will have to sing The New York song or they won’t land the plane?

Julian, breaks out in song. And then I join him and so does Quinn (she knows the song from kindergarten). We laugh and sing and talk about our upcoming trip to New York for Gage’s wish.

Me: “So, let’s sing it again!”

Quinn: “Yeah! Da.da.da.da.da….Da.da.da.da.da….”

Gage: “I am not buying it.”

Pause

Gage: “Well, how long do they circle?”

I have a friend, Jen, who is remarkable and she has a remarkable family. I met her as she was seeking support near the day the doctors said her in utero baby would die due to ARPKD and told her to terminate the pregnancy. She didn’t. He lived. And he is a joy to her family. And to me.

I talk to many women whose babies have been recently diagnosed with ARPKD in my role as a volunteer with the PKD Foundation and I don’t always build a close bond. There are a few women this has happened with and I am lucky that I have them in my life – Jen is one of them. Jen is a close friend to me, even though we’ve never met face-to-face. She is fiercely protective of her boys and I dare you to stand in the way of their comfort, their health or their happiness.

Her family’s story was in the Wall Street Journal – it was facilitated by another organization that serves the ARPKD community but one that has people connected to it that don’t take to kindly to the work that myself and other people do for the PKD Foundation; this is no secret. There’s a long back story that I won’t get into here, but some players that support this organization like to make waves that distract from the work that ALL OF US do. I just don’t get it. My point is, we should get to choose our own path as to how we advocate for our family, make connections, or fund raise without being attacked for it. The choices I make to serve the ARPKD community shouldn’t be made to feel wrong. Or less. There are no wrong choices in the world of raising sick kids.

I think people forget that it is about the kids and families of kids with ARPKD. Jen isn’t sure about Parker’s diagnosis. Like Gage and Quinn, he has some other things going on that are sending doctors in different directions, but we connected because of ARPKD. And no matter what organization she supports (she supports both), I’m so happy that we connected to each other.

I’m a better person knowing her and the other women I’ve been lucky enough to be close with because of this life.

Jen, your story is a powerful one. And one I hope will open some people up to a bigger world of compassion and hope. I know that for me, you inspire me to do more for the PKD Foundation. And I thank you.

I am traveling this weekend for the PKD Foundation’s Board of Trustees meeting and it is always good to be around the people that are taking care of PKD interests. I enjoy being on the board because I get to be a part of the inner workings of what is going on and I feel I have a vested interest (duh) in what they are doing and I feel I have an important voice as a parent volunteer to kids with arpkd.

It’s always energizing to be with the people that are telling the world about PKD and doing tangible things, with no other agenda, because they want to find treatments and a cure.

Plus, I have two days of meetings in a conference room and I get to only take care of myself! Hey! I don’t have to brush anyone’s teeth but my own tonight.

Bliss.

Gage’s psychairtrist and I have found a groove. Yesterday she increased the concerta after we and the teachers say that Gage is still unfocused and all over the place. Gage started it today and we should know in the next couple of days if it is better.

When we have this issue settled a bit, we will go up on the zoloft. She doesn’t want to change two meds at the same time so we are looking at the crisis of the day, or the day before, or the few days before that and since she was able to read Gage’s planner, where just some of the notes about Gage exist, well, let’s just say she is a believer.

I think the relationship shifted when she put Gage’s case up to peer review and I sense they said if we worked with a behaviorist (they knew him)  for 4 years then we need to move on to other treatments. I think it was then that she maybe started to believe me. Before that, I got the feeling that she was skeptical. That we were going through a rough spell with Gage and that maybe we just weren’t doing all we needed to in order to help the situation, but as times goes on and I tell her where we’ve been she’s maybe thinking I am not a drug seeking mother who wants to zombie-out her child. Which I very much do not, but if the meds help Gage cope, then who am I to deny that from him? He has enough to deal with as it is and if we can ease his suffering from anxiety, depression, and lack of attention, and an overabundant of impulsiveness, then we will.

Because that is our responsibility to him regardless of our personal desires and internal struggles with meds. I am not a fan of putting Gage on more meds. Julian isn’t a fan of these meds. I’m comfortable with where we are and the plan to follow up with her in 2 weeks. We’re on an every 2 week schedule with her.

This week I spoke with a woman whose teenager is in an adolescent residential facility because of many of the same problems that Gage exhibits, but more intense. He survived a very serious childhood illness that was full of medical interventions and the experience has not left him without issues. This was their last resort. It is expected that he will be there for months, but things are improving.

I thought a lot about her this week and how difficult that choice must have been and then I understood how she must have felt when she arranged this and had to tell her son. And then I thought about her dropping off her son to live somewhere else, for months. But I believe that through the sadness (and relief, I imagine) that she must have felt some hope, too.

And then I thought about Gage and how as much as that would hurt me to the core of my soul I would do it if I thought that meant the difference between a life of continual struggles with stability with education, future employment, socialization and his self worth. Because trying to foster those qualities are our responsibility to our kids, and finding the right way for him – not us – is what we would do. And is what we do.

As parents, we set aside our own standards – higher or lower – and we make them fit our Gage. It’s what I can do. It’s all I can do.

The girl who is ignored because she is so good! The boy! He demands a lot of focus! But don’t worry, she’s well-loved (and she get’s plenty attention because she is smart and funny and cute!) and doing okay right now.

I mean, besides that kidney failure thing.

I leisurely picked up the kids today at school and in the hall on the way to try to speak with a teacher, one teacher stopped me to only tell me about a homework sheet in Gage’s backpack. Imagine my surprise not to get a bad report from her about his behavior.

Since Monday I’ve heard from 5 teachers about his behavior either by email, walking the halls, or notes home in the folder. I’ve had 4 conversations (two phone calls and others in person) about strategies that feel like grasping. But there’s no other choice; we have to go through the process because we’re missing something that will work.

Today as I was taking to the P.E. teacher about how we might try to turn The Current Tide That Is Gage I realized that as many times as I think about Gage being so out of sync and depressed and unhappy, I am constantly sharing it with whoever will listen because I keep thinking maybe they will see something I am not seeing.

But you know what? I know him best. And while I am at a loss, I am not without potential ideas that probably won’t work, but maybe, could be, a slight chance that kinda sort of could. And I the brainpower and emotions that I am going through trying to navigate this has me tired and unable to truly comprehend how completely insane (Leslie says I can’t say “crazy” and “insane” anymore about Gage, because, well…he IS crazy.) the situation is right now.

I think we have to try to get the teachers to turn back to positive reinforcement. Gage has never responded well to tons of criticism and punishment and that is a lot of the strategy right now for people on the outskirts of his learning. His homeroom teacher gets it. And his special ed teacher gets it. And he respects and likes the special ed assistant, so I am assuming she gets is as well. But the others haven’t been privy to the information the others have over the years so I have to get them up to speed and that is now in progress.

I gave the P.E. teacher some suggestions about distracting Gage when he is out of control. I had to tell him to pick his battles. I had to tell him how he might be able to separate Gage and a couple of other rambunctious kids when they naturally team up. It’s all in how you phrase it from “Gage, stop that, don’t do that, cut it out!” to “Gage, I know you are a great helper because so and so told me, maybe you could help me round up this equipment!” or “Gage, I think today it would be great if you could do that with so and so because it would be fun!”

Unfortunately his art teacher hasn’t learned yet that sitting Gage down to tell him that his choices are bad and that he needs to do this and that, and that he needs to figure out how to get motivated won’t work. I had to break it to her that he is unmotivated about every single thing in his life and talking to won’t do the trick. She was amazingly very open to hearing about Gage’s challenges and wants to help so badly, which I adore. So I gave her the idea that taking a digital picture of his work before and after class and her emailing them to me might be a good way for him to be excited to show me when he gets home from school and that could possibly, maybe, hopefully, perhaps, on a small scale, slight chance could help.

Today I decided that we need to go back to Gage carrying a note to each teacher and therapist and they can rate his behavior – 0-3 stars that we will translate to the chart at home. The stars add up for STUFF if they get a minimum for the week. Julian said “there has to be consequences if he doesn’t bring the note home!” I had to put my foot down and tell him that that is unreasonable and let’s focus on the big stuff, not sweat that. The plan is for one of us to physically pick him up in his room each day to collect his homework, star note and planner. It is just tightening up the reins a bit (I didn’t believe it was possible, but alas! It is!) and not leaving much to him (Gage, not Julian) in the way of thinking extra. My thought is that all of his extras need to filter into better behavior.

I’m nothing if not practical.

So, after I picked them up today and we hung around a bit so I could talk to teachers and ended up at the library – where I think the media center person (in the olden days we called them librarians) was a little annoyed by Gage. Then we headed to a little market across from school for grape and orange cream sodas and boiled peanuts. At home the three of us sat outside in the beautiful sunny fall day and enjoyed soda and peanuts and laughed and talked as I taught Quinn how to shell the peanuts and Gage searched for 4 peanuts in one shell because I told him they were lucky!

Gage headed to piano and Quinn’s to a friend’s house and then home. Quinn wasn’t feeling well (didn’t eat dinner and didn’t want to read before bed) so she went down a little early. Gage asked if he could sleep with me and then we had a good 45 minutes together talking about a lot of different things like Egypt, mummies, his free writing and comic strips and then we had the strangest conversation before he asked when I was coming to sleep because I had mentioned that if I was cold I was going to snuggle up to him.

He told me that he’d been thinking about the little 5 year old boy he’d heard about…

Gage: “I heard about a 5 year old boy who died because “he didn’t take his meds.”

Me: “Really? What happened?”

Gage: “He was separated from his parents because they were bad, and someone was chasing him and then he ran out into the street, but he died from not taking his meds.”

Me: Thinking to myself…WHAT? WHAT? Need to remember this conversation for the therapist…need to blog this to remember it….WHAT? Meds and dead children?

Me: “Well you are always good about taking your meds. You are a med star! And you know, though, you wouldn’t die from not taking your meds, but your new kidney would quit working and you would need dialysis and another kidney transplant.”

Gage, Looking puzzled: “I know that. But there was a woods and then the boy ran out from the woods because there was something chasing him and he ran in the street to get away, and he died.”

Me: “Did he die from being in the street, or the thing that was chasing him or by not taking his meds?”

It went on…just like that. And then we laid down and talked a while longer and it was lovely. And it was the perfect end to this horrible start of a morning.

So, the boiled peanuts. It’s a Southern thing and apparently, a thing that helps angry, sad boys connect to their yelling mommas!