Way back before acute kidney failure and that pesky dialysis when Gage and Quinn had labs we went to a local LabCorp office for the blood draws. After a few years of schlepping them to the hospital and all the drama of that I’d figured out I could take them to a lab around the corner. It was generally quick, mostly painless, and hassle-free. I’d felt like I’d won the lottery when I figured we could save all that time by not having to go to Children’s Hospital.

Two weeks ago the transplant team released us to go back to the lab on our no doctor appointment at clinic, so that meant once a month we didn’t have to do the 2+ hour ordeal of getting labs draw at the clinic in the hospital.

I was pretty happy and smug even thinking I was so clever about requesting this as Gage and I were able to leave home at a reasonable hour yesterday morning knowing I could get him to school less than an hour late. HAHAHAHAHA.

Not worth it.

It all went okay until she had to jab him (maybe twice? I would ask Gage but I don’t want to bring it up again!) and move the needle WHILE IN HIS ARM causing my boy to cry out loud around the corner from me in the little clinic room. I knew that I shouldn’t have run in there, because he would have just freaked out more. When he came out he was quietly crying and just buried his head in my shoulder for comfort (which he doesn’t do often) for the next 5 minutes. He wasn’t a typical Gage mad about it, he was really sad. Which made me sad.

His arm hurt enough so even the offer of a donut wouldn’t heal it so at school I gave him a couple of tabs for pain and warned the teacher and nurse anything could happen – that this had the potential of ruining his day. Because he’s just like that.

Luckily for all of us it was a low-key day with no math that included cleaning their desks, watching a play about Penquins by the 1st graders, and helping his teacher clean the room. He was in heaven telling me about it as he jumped into the car today. The boy loves a good cleaning task. Well, right after he mentioned that his arm still hurt from “that mean lady who moved the needle.” Can’t tell me he doesn’t hold a grudge.

So, we won’t be going back to that lab. I’ll let him at least have control over that decision. Poor thing. He did say he would try another LabCorp office though. So at least there’s that.

This morning when I dropped off Gage after labs (that’s another post entirely) his teacher made a point to tell me that while Gage has been challenging in the behavior area as of late that all the kids are a little wild this week given that winter break starts after school Friday. She also said that Gage is doing well with the new plan and learning a lot and we should be happy and proud.

I just about cried on the way out of school. Those tears I’ll take over the other ones. It’s not so uncommon for us to only get daily reports of unfinished work, not following simple requests, easily distracted, rocking back in chairs, talking when he shouldn’t be, talking in to microphones in the lunch room…you get the idea.

It’s a little bit sad how happy that made me.

We had an early (oh, how I loathe early meetings) meeting about where Gage is educationally since the change up about 6 weeks ago (or is it 5?) to take him out of the classroom for reading help. Seems that he is improving on his scores (remember? I said I wanted something measurable?) for reading and phonics. We all suspect his confidence level is increasing because he is pulled out of the larger groups in his regular class (where he is at the bottom) and is able to shine in a smaller group in special ed. So, he’s doing well in that regard. We’ve also noticed that he is reading better at home, so there are no surprises, which is nice when it is that early in the morning.

There are still behavior issues. Gage is easily distracted from the task at hand and has trouble working in groups without one-on-one attention. No surprise there. He’s also digging in his heels when he doesn’t want to work on something; like a worksheet for example. This is not acceptable behavior to any of us who care for Gage’s educational well-being, as you might imagine, so we have a plan. You know, because it is always best to hit Gage with shock value rather than explanation and warning.

So starting today, when he refuses to work on something will be to stay after school and finish it with his special ed teacher. Since he really doesn’t want to be at school longer than he has to be, this should do the trick.

How many adults does it take to educate your children?

An email found its way into my inbox today and reminded me of photography services offered (for FREE) to people during difficult and joyous times in their lives.

www.celebratingadoption.org – (this has music) This organization offers sessions for families that are created through adoption. I don’t know anyone who has used them, but they list an awful lot of photographers across the world. I immediately thought of my friend, Dawn, who is in an open, domestic adoption with the first mom of their girl, Madison. I know Dawn, her family, and Madison’s first mom would take the most wonderful photo. I can almost see it in my brain.

www.flashesofhope.org – This group offers sessions to sick kids, their families and friends in sessions in hospitals. I have a friend (the infamous P who I mentioned months ago because he was near death in the ICU but pulled through) whose son had this session in the last several months and in the magic that is post-photo computer enhanced, they removed his feeding tube.

www.nowilaymedowntosleep.org – Sadly, not all pregnancies and births are those that end in a baby coming home. These photographers will come to the hospital when there is a pregnancy in crisis, and the baby is sill born, not expected to live or extremely ill. I have friends who have had ARPKD babies that have died who say they treasure they have photos of their babies. If you can, look at the gallery, they are amazing photos. Sad. But beautiful.

When I was at the pediatrician’s office last week to get Quinn’s ears checked (a little irritation, slightly painful but mostly annoying to Quinn) the doctor asked how Gage was doing. It was nice to catch her up on all the kidney stuff.

The doc hasn’t seen him since last February and he was on dialysis. We’d been covered in the health care market and pretty much anything that came up over the last year was kidney related (I demand you thank the kidney gods right now) so we didn’t have the need for regular ped stuff. I’d run into her at the market a few months after his transplant and we spoke briefly about how he was doing. She’s always been a compassionate listener when discussing Gage’s behavior issues with each passing annual appointment and it’s one of the reasons I will wait weeks for an appointment to see her with the kids.

She asked again how he was doing behaviorally. I said, we’d had our challenges, as always. I said “He’s just hard.” I then added quickly, “I’m glad he’s alive though, so I feel guilty complaining.” I mentioned we still saw the behaviorist and that it is usually two steps forward with one thing and one step back with another. She reasoned with me that she is in a similar position with her mouthy teenager!

She did say something I hadn’t thought about for some time about Gage. She asked me if it is hard for me, as his mother, to deal with what issues Gage has and how they impact others issues. Is it hard to never know which impacts what?

Yes. It is. Very hard to think about how different Gage’s life might have been had he not had OMA or the ARPKD. I told her that probably Gage would have been a “difficult child” or a “strong-willed” child (as some people like to sugar coat it) anyway, but who knows how differently he might have coped had he not had to deal with having ARPKD and OMA. I know with certainty that OMA, having affected his development causing universal delays, added to his frustrations as a child and changed his personality. I think he’s impatient with himself and his abilities. Cognitively he is at his age, but he lacks the skills to read, write and function educationally at the same level (which I think feeds into his frustration, because he knows he should be able to do these things). People will disagree with me on some of these points. But I know my boy. And every once I see a glimmer of normal. And I wonder.

Being a mom to a child with special needs, and in particular a behaviorally challenged one, can wreck havoc on your confidence as a mother. Many days out of the week I’m faced with Gage’s behavior and (not so good) choices and I have to orchestrate an entire strategy for incidents that come our way. I often reevaluate what I am doing…because Gage catches on quickly.

Anyway, back to the point that the pediatrician made. Yes, it’s hard to realize that each of his problems impacts the other problems or creates them – mostly because it’s hard to navigate parenting. Quinn has her own issues, but behavior isn’t a huge one (sadly, she earns a lot from Gage) at this time.

But really, I can’t live in the everyday if I am wondering why they are how they are, I just have to resign myself that it will always be difficult in some form with either or both kids, then tackle each issue as they come. And if they are coming all at once, as they usually do with chronically ill, educationally-challenged kids, then just tackle them all at once. And while that realization makes me sad it is not healthy for me, as their mother, to stay stuck in that sadness.

Part of mothering the different child means becoming a different mother from the one you thought you would be.

Quinn had her holiday school performance last night and I got a little teary eyed. She will graduate from her special ed school as she is aging out at the ripe old age of 6. It’s a magical place and I will be sad when she will no longer go there. Some three+ years ago, as I watched the 1st holiday program she was in and witnessed the pure cuteness of the kids in kindergarten I wondered to myself what that would feel like, to have your child leaving that school after 4 years. Quinn had a better start educationally because of this school and I will forever be grateful. I always have a twinge of angst about Gage not attending (it could have changed the course he is on now) but we didn’t know about it and while I do regret it, there is nothing I can do to change the past.

So last night we went to dinner at the place of her choosing and she shouts: “I want to go to Quinn’s for Chicken!!, because I love their Chicken!! And it is has the same name as me!” So here she is acting silly, with chicken remnants noticeable, on the evening of the last holiday performance of her preschool career. I will not say that it went by fast, because IT DIDN’T, these have been a long 3+ years and it’s been wonderful to watch her flourish in such a special place.

Gage was a complete angel today (did lose a stick at school, so no TV). I picked him up early for a dreaded dentist visit (just dreaded for Gage, but it went surprisingly well). Julian swears it’s the new plan he’s devised.

We are changing things up on Gage again for the behavior modification plan. He’s really give us a hard time and it SUCKS because he is really controlling some things and that is a big no-no, so we talked about it last night and decided to revise The Program, as we often do when I have a melt down, repeating in a low voice, rocking back and forth, “it’s not working, the program is not working, we need to change the program.”

Dang this boy is WORK.

He’s been disrespectful – answer questions rudely (either in tone or in loudness) before we are done talking, acting annoyed when we ask him to do something or correct him on something.

Julian and I are at odds about a few things that are proving challenging.

1. He thinks Gage is 20% out of line and 80% “normal 8 year old boy.” More like the other way around sweetie.

2. He thinks that fear and intimidation are working (he falls back to it because of how he was raised), including a spanking every now and then (his were memorable). I am opposed to spanking Gage. It doesn’t work long-term. It does short-term (gets Gage’s attention), which satisfies Julian right then, but not me for the long term prognosis.

3. I want to go back to the original Program of praise and recognition, and 30-minute timeouts for the behaviors we want to extinct, one/two at a time over a month. He is resisting it because he never truly believed in it (this is not a surprise to me, just an observation out loud to him) and because he was traveling more and I was in charge, he went along with it. Now that he’s involved more in the day to day, homework, etc., he’s finding it hard to do the program with consistency. This pisses me off. For many reasons.

We talked for a long time and I am fine to try a few things, but want the spanking to stop.

1. Good day (no apple sticks taken away) at school gets Gage an hour of TV.

2. After school, homework is the first task. Depending on what it is, we will set a time limit to complete it (and really, it’s stupid the low amount of things and how long it takes us), say 30 minutes. If he doesn’t complete it, he goes to time out for his prescribed, Dr. approved, 30 minute time out. He will come back and try again. If he doesn’t complete it by bedtime, he will have to get up early to do it. If he doesn’t do that, we are going to see if he can stay late in special ed after school to complete it. If he does it in a timely manner, play time until dinner can be had; tree house, tire swing, inside fort, whatever.

3. Back-talking, yelling, disrespectful faces or body-language, running off in a huff of anger, spelling N.O. or Y.E.S to us to answer questions, cutting us off mid-sentence, hitting or intimidating Quinn will also earn Gage a 30 minute time out.

4. Praise good choices and randomly offer small rewards.

5. Do Not Under Any Circumstances Negotiate With Gage. He can pull you in faster than you can blink and before you know it you are having a conversation about something you were so sure of 5 minutes ago, but now, you are not so sure. He is that good. A mini-lawyer, my boy. He is way smarter than he lets anyone in on. But I shall not be defeated. New resolve to not explain, talk, or converse about said consequence. Repeat. Many times during the day.

I’m so tired of dealing with this. Truly. Tired. Tired. Tired.

I called the liver team on Friday to remind them to check Gage’s labs for liver counts from his labs on Thursday. Got that?

I called them back today to see if they had a chance to look at the labs and figure out our next steps. Appointment? Monitor with labs?

None of the docs has not seen them yet, but the assistant read them to me and they were lower. So that is good. Hopefully I will hear from them tomorrow. But so far it doesn’t suck.

Quinn: I like Hanukkah because you get chocolate.

Happy Hanukkah to my friends…