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!

So much has happened today…

2 conference calls with clients

3 calls regarding client work

2 calls with doctor who treated Gage

2 calls with nurse at hospital about discharge, regarding paperwork needed to get him back in school

2 calls with school about his return and separately, updating his IEP – meeting scheduled today for that.

1 call to ped to get Quinn in this afternoon.

1 call to my BFF for Q duty.

1 call to my mom to relieve BFF while I pick up Gage.

2 calls to Julian out of town

But Gage is home and doc has released him to return to school.

1 PB&J (gober) sandwich and half a jar from a spoon.

1 happy-to-be-home boy

1 happy sister

1 happy dog

28 blog posts in my head about all of this

1 blog post about parents who are about excluding rather than including, unlike Gage’s BFF Laura’s mom, who not only allows her daughter to have a friendship with my son, but often encourages it.

More later.

I had two good visits with Gage; one yesterday and one today. This is what we know:

- He was interactive with me. Both days we did nothing that we wouldn’t do with him living on the outside; we read a book, did a small puzzle, played a card game, played with a magnet board and read a couple of cards and notes together.

- He is on “One-to-One” orders right now and has been since he arrived on Wednesday. He said he can’t leave the unit or go to the gym or outside because of the order. The order includes 24 hours a day. So someone watches him sleep, too. He found it hard to sleep while someone was staring at him. The weekend person said she is going to give the doctor a good report for the weekend. He’s been compliant, participating and calm.

- Gage looked shaky yesterday but today I didn’t notice any of it. He also SAT with me FOR A WHOLE HOUR, which might not mean much to you folks with kids not living in a mental hospital, but for me? Pretty shocking. I know we were playing , but usually he’d rather take apart a chair than interact for an hour doing anything.

- I am so relieved that he is safe. Those first two days were rough for him, but on the outside? Unbearable. Parents shouldn’t have to hold their child and keep them in a “safe room” and watch them for 24+ hours. I mean we would have but I’m glad I don’t have the memory of it, even if I know it occurred. I’m so thankful there was a place for him. I understand it is the only place in Atlanta.

- I am not sure what Gage remembers from the episode. So far I know he remembers the safe room. Not sure he has a concrete memory of the spiraling out of control, and I hope he doesn’t.

- I get to see him tomorrow for an hour as well so I asked him if he wanted me to bring anything special. He mentioned a specific coloring book of his. He also enjoyed the notes and pictures I brought. His BFF, Laura sent a note and picture and as I left he and his STALKER were going to hang it up in his room.

- Things are very calm in the house without him here. I hope when he comes back some of that calmness remains. We’ve been in the war so long, I forgot what calmness felt like. I so badly want this to be a new beginning for him; a stepping stone to a better life for himself. And one that involves a better life for the other three in the family.

We will know more tomorrow when his doc is back on duty. We might get an idea of when he will be coming home. In the meantime I need to have an IEP meeting with the school so we can talk about reentry. The social worker told me Friday that the average stay is 5-7 days for stabilization. Wednesday will be one week.

If we are going to focus on anything it would be that Gage is out of crisis.

Friday I was able to see Gage. The hospital called me to come in to see a social worker along with Gage late in the day. I met with the social worker first because I needed to address some items that were bugging us about the first day and a half stay for Gage.

1. When we called Thursday night to check on Gage and confirm they gave him his transplant meds no one could really tell us what time they were given. We spoke to 5 people trying to get an answer. There is a difference between the time a med is ORDERED vs. the time a med is GIVEN. And no one could answer that question. Not comforting. Yesterday, I met one of the few people that dispense meds at 9 and 9 and she knew the meds, doses and importance.

2. A month ago I started notebooks that each morning I write a message in to each of the kids. I started it for Gage so I can give him a message about the things I love about him. So each night I write a note and each morning he says, “I saw your note.” And that’s it. One night I forgot to write it and he really did miss it. The second I walked downstairs he said, “Mommy, you didn’t write in my book!” So I know the notes each morning meant a lot to him. So when Gage was checked in we had a quick meeting with the head nurse and he gave us all the details about contact, visiting, phone and fax. I asked him specifically if I could fax Gage notes each morning and he said yes. But I sent two and he didn’t get them when I checked today. Annoying. I know it seems like a little thing, but I want Gage to know that the notes are important to me and it’s important he know that each morning I am still thinking about him even though he is out of sight. I want him to know I am thinking about him.

3. It was annoying that the social worker hadn’t read the file or met Gage. She hadn’t even talked live to anyone before hand to get any back history. I don’t know about you but I’m guessing if you are going to talk to a patient and their parent about how he came to be there and how it is that he can get home, then you had better read the file. But that’s just me.

When I saw Gage in the hallway it wasn’t very dramatic. I immediately put my arm around him, kissed his forehead, noticed two bruises (guessing they got there during the hours of raging) and told him how happy I was to see him. He looked zoned out a bit, but he was up 31 hours straight the day before and so he’d taken an hour nap before I got there.  Or it’s the med and his body’s adjustment. When I was leaving he got upset (presumably because he wasn’t coming with me) and went to his bedroom, where he was crying under his weighted blanket.

He didn’t really participate in the social worker meeting (and I didn’t think he would, so my expectations were low) but we both did tell him that our goal was for him to come home and that in order to do that he needed to participate and learn some coping skills to help him deal with his anger. I told him that I bet he could learn a lot there if he tried and I encouraged him to do so. I told him that I loved him and that I wanted him home.

He said he hated it there. Yeah, figured that sweetie. But then I realize too, that maybe home won’t look so horrible. We have to be better than a mental hospital, right? Yeah, that’s what we think, too.

I held it completely together while I was with him but when I was leaving I was crying. Such is the life of leaving your child behind to deal with their problems in a setting you hope will help. Still though, with the leaving. Suckage.

We can call him and talk to him each night between 8-8:30. Since I saw him I wanted Julian to talk to him so he called and Gage answered yes, no, then said, “I have another call, I have to go. Bye.” Julian called me and asked him if I was calling him. No. I guess they only have 2 phones that work (whatever) but 40 kids, who all probably get calls. Julian called back and the nurse explained that she told Gage that other people needed to make calls. She did tell Julian that Gage had a great evening, was compliant and even participated in group. Stunned.

In a little while I get to go see him. I have a couple of card games to bring, this morning’s note and my love. That is all because they will not let me bring anything else. Nothing that could be a weapon or something that a kid could harm themselves with and so, nothing else.

I am so thankful that Quinn got to spend the night at a friend’s house, so she could just be normal in the midst of all of this with Gage. She watched movies, played and this morning I understand she had pancakes and bacon. My lovely friend Sue is keeping her until after I see Gage today and then we are headed to see one of Quinn’s favorite people; our goddaughter Tess.

I am largely numb today, feeling like our family life is out of control yet I’m keeping it all in check because that’s what moms do. I had the privilege of going through stacks of medical bills/statements and the total owed is nearing $70,000. I know Medicare will pick up most of it, it’s that other $10-$15k I’m worried about but also know it will work out, as we always have to believe.

I’m at work catching up and distracting myself until it is time to go see my boy. The boy with so many challenges that I see it makes me wonder how he is viewing himself and the situation. It is a sad, scary time for all of us as we contemplate the immediate future and the distant one, too.

But that is not new to us. I just always thought it would be his physical health in question. I never imagined that his mental health would be in question. This is exactly what I was talking about when I said it is never-ending. It honestly never ends. But deep down we have to believe it can only get better. Right? Right.

Note to parents with kids with failing kidneys: Do not continue reading if you are not having a strong parental day (Really, leave this site now). And go visit or Awkward Family Photos or Go Fug Yourself.

It’s no secret that Quinn was nearing dialysis before her transplant evaluation. Her kidney function leveled down at a steady pace slowly for a couple of years and then over the period of 4 months dropped at an alarming rate. If I had to guess, she would have probably had a catheter placed within a month that she had her transplant. If I, and a very few people involved in her care (doc local, doc out of towner, one coordinator and one case manager) hadn’t pushed for a preemptive transplant, she would likely be on dialysis until we could arrange testing (3 months for 1 person at a time) and surgery.

The same people had all seen firsthand the effects of quickly failing kidneys of a 7 year old child. We’d all (except for our case manager) witnessed Gage’s decline and I assume we all shared some silent guilt that he got that bad – without dialysis he would have died in a matter of weeks – before transplant evaluation, because by the time we got in for that he had very little function. His body was being poisoned from the inside out. He was in terrible shape.

I’m astounded (still) that some people in the health care field don’t think much about a child having to go on dialysis while waiting for a kidney, even when there are willing donors, and in some cases, like ours, multiple willing, potential donors. Some even have the power to change things, but don’t. It’s a sign they’ve lost touch with the impact on the child and the family. I know that dialysis kept my son alive and I am grateful for that option or he would have died. Don’t misunderstand that fact. I have gratefulness everyday for a machine that kept my son alive until Jody could donate her kidney to him.

But living on dialysis, while it is living, isn’t much of a life. What is life like for a child on hemodialysis (preformed at the hospital) 3 days a week?

For some kids, like teenagers, it begins at somewhere around 5:00am. They drive themselves or a friend or family member brings them to arrive at the hospital by 6:15am. Dialysis takes roughly 3 hours, a little more for some, depending on several factors. They come to the early shift usually so they can get to school around 9:30 or 10 and have a semi-normal school day. Unless they are so sick they can’t attend school and they are home schooled or served by their county’s homebound program, which is 5 hours a week of instruction. Many times they are too tired to participate in activities. So sometimes social activities are limited. Some kids, who have little family around them and their parent/caregiver, are driven to and from dialysis by strangers in cabs or on vans.

Kids who come in for the 10 or 10:30 shift are often little bitty ones – the under age 5 group. They don’t have school schedules to contend with so that is the schedule that is given – the middle of the typical dialysis day. There is rarely a choice of a time slot because machines are limited and help 3 kids per day of dialysis per machine. Kids in elementary, like Gage, come in around 2:15 which means they leave school early. For people like us, who are lucky to live near the hospital it’s easy, Gage missed the last 1-2 hours of school. Now, they want you be be there at 2:15 to be ready to get on the machine (takes 15-25 min) around 2:30 because the machine is going to run 3 hours (at least) so that is already pushing you to 5:40pm. But wait! If the machine you are supposed to be on still has a kid on it, you wait. Remember there are 2 other kids on the machine during the day. If they or their driver run late or if there is a complication with their health that slows things down, then well, you don’t get back in the area for prep until later and then 15 minutes for set up so you are pushing 3 or 3:30. Which means you aren’t off the machine until 6:30, or later. You are at the mercy of the time you can get on the machine.

What is being on the machine like for a kid? Well, if you are a teenager on the early shift, you sleep, or you listen to music and do homework, you read or you text, or you watch TV (each chair has a TV with DVD). If you are a little bitty one, you are in a metal crib, your parent or caregiver stands next to you to distract you from wanting to get out of the metal cage you are in. If you are a kid in elementary school or middle school you do your homework, watch TV, play video games. That is unless you feel nauseous enough to vomit for up to the 3 hours. You might feel fine, tired, drained or you might have a massive headache. It all depends on the rate they are running blood out of your body, cleaning it and putting it back into your body, which varies for each child.

That process can mess with your body and each body is different. So you spend a lot of time watching the docs and nurses fine-tuning the settings for the best dialysis arrangement. Except when they need to adjust it, which is more than it is not. They weigh you at the beginning and end of each session and record it. They record the settings on the machines. You are also hooked up to an automatic BP cuff for intervals of blood pressure checks. You come to hate The Cuff. If you are little and can’t be reasoned with to wear it and keep your arm still for the time you are on the machine that the cuff is monitoring your blood pressure, you come cry at sight of The Cuff.

If you are a lucky kid you won’t get an infection at your catheter site or an infection that starts there and moves to your blood. You can’t get the site wet so there are no showers, no swimming and a sterile environment even for something as simple as a bandage replacement – that means masks and gloves for anyone near the site uncovered or with an open edge on the bandage. Catheters have tubes that are hanging out of the body and well, accidents happen when you are a kid. Gage’s unfortunate accident was something as simple as a game of tag at school. Another child accidentally pulled the catheter and it moved just enough to create concern of it coming out (which would create tons of blood loss) with a simple tug of a shirt removal or hug and it had to be replaced. Many kids suffer infections, catheter replacements and hospital stays during their course of dialysis. In fact, all the kids I know from dialysis have.

If you are the parent you are kind of in the way. The nurses are up a lot going from kid to kid because they are recording numbers from the machine, the machine is beeping and they have to make it stop, and the BP machine is beeping and then there are the chairs for the guests. They don’t make them comfortable, you know. It sends a message that they don’t really want you back there. Unless you have a baby and it’s awake and crying to be let out of the metal crib. Then you have to be there standing (remember, it’s like a cage, and it’s high up, so there aren’t really any chairs that high, so if you have a little bitty one, then you are standing most of the time). If you have a little bitty one, you are praying they nap.

Part of our hospital’s routine was to provide a meal when the child leaves. So we order off a sheet and by the time we leave  the food is there, but that’s okay because you can’t eat on dialysis and the kids I’ve seen are pretty hungry. So for as long as you are on dialysis, at least three meals a week are served on cardboard trays, on your way out the door. Carried by the child if they can hold it and in Gage’s case, his backpack and Sally, Ugly Orange Kitty. Often times you just want to get home because your kid is cranky from not having had a break (unless you call the drive from school to the hospital a “break”) so it doesn’t take much persuading for your kid to agree to eat in the car. Off of the cardboard tray they’ve carried themselves. In the back seat of your car as you drive, usually in the dark, on the way home (not too long before bedtime actually). Unless you have to drop off or pick up a prescription.

You are getting off during traffic if you are on the last shift. Most kid’s dialysis centers are in Children’s Hopsitals in cities, so often times the commute time is made harder because of traffic in the city. But most of the time, your child is eating, so they are distracted, unless they aren’t feeling well and they are throwing up into one of those kidney shaped (HAHAHAHA really) vomit holders and you are leaning over handing them napkins and towels. Sometimes they have a headache so bad they aren’t talking.

So what does your child miss?

Everything connected with time. Time to build friendships and more importantly to learn how to build friendships if you are a kid Gage’s age. For a baby, you miss critical time to develop your little body and brain. You don’t hit milestones on time. For important pre and teen years, puberty is messed up. For all kids, growth is an issue, so your body is smaller than your peers. You don’t really have time see your friends because of dialysis and all your appointments. Probably some tutoring to try to stay ahead (or just catch up) educationally if you are school-aged. Therapy appointments if you are an itty bitty one. You are on a restricted diet so going to parties and out to eat becomes an issue (if you want to stay healthy, but if you are a teenager…it’s hard not to eat what your friends are and it’s a constant struggle within yourself.). Many of these issues mess with your self-esteem too, by the way. Not for all kids, but for kids like Gage, who were probably going to have issues anyway this just compounds the problems.

School is a challenge. Not for all kids I’m sure, but a lot. It could be from having to have so much time out of school or it could be because you can’t concentrate when you are in kidney failure, as one teenager told me was her issue. I’ve never forgotten the conversation as a teenager explained she would raise her hand in class and by the time she was called on she would forget what she was going to say.

Dialysis. It kept Gage alive and I would help him through all of that and more to survive it. But still. There’s an impact.

Obviously, as the caregiver, if you try to work and care for a kid on dialysis, it’s hard. Because you either have to work for yourself or you have to have a hellofan understanding boss. You can’t make money usually (I couldn’t figure out the perfect way, except for being able to send some emails) when you are at dialysis with your kid, which you desperately need to pay for life and for the self-employed,  insurance premiums, but what can you do. You hope that government assistance helps you enough. There’s the costs associated with being at the hospital. Parking, food (as a parent you skip lunch on dialysis days to get other things done during that precious time), and gas for transportation. Then there’s the dinner thing. At least three days a week if you are on the late shift like we were you don’t get to eat dinner together as a family (Gage usually went to bed close to when we got home). Siblings also miss out on your time if you are the caregiver parent. And what if you are single? You have to depend on family or great friends to care for your other children while you are out with your kid on dialysis. Because sick kids are first priority. Siblings are 2nd tier for the time being and they have to cope with that fact.

If you are married or a couple with a child on dialysis? You talk a lot about kidney failure and about what happened on dialysis. In a case like ours we were constantly talking about where we were in the donor testing process either for us or our (finally approved) non-related donor, Jody. That doesn’t leave much room for romance, you know? Because nothing says romance like cleaning up throw up or talking about what else your kid has missed during his time out for dialysis. Or talking about how you cope with the emotional effects of having a sick kid. Each day you play catch up.

Time for yourself as the caregiver? It’s great when you can steal a few moments for a movie, a hobby, a phone call. Even a bath or pedicure. But that doesn’t happen very often. And it’s made harder because when you are the caregiver it’s hard to let other people go with the child because no one knows them like you. For the few (literally few) times that someone took Gage (out of 78 times he had dialysis treatment) I worried about him, or it felt like I had to cover nearly every aspect of the visit and the potential mishaps they could encounter. It just felt easier going myself. If I wasn’t there, I worried constantly of what could be going wrong and how only I would know the exact way to help Gage cope (I know this isn’t the most rational thing, but you know what, I was his primary medical caregiver and that’s how I felt.).

If you are like me the one constant thing you think about is how to make your kid feel normal. But really, that’s impossible to do, even if you are as creative as me. There’s no way to make this feel normal. But you have to act like it’s normal or your head will explode.

The other constant things you think about are your financial stability, your kid’s education, their development, your job, your other child/ren, when will your kid get a kidney, your relationships and what you are ignoring in them and just about everything else because it all feels so out of control.

It is excruciating to watch your child go through dialysis. Heartbreaking to watch your child suffer the domino toppling impact of a progressive disease and poor health. It changes the very nature of the interaction of a family. Of a parent and child, a sibling with her brother, a husband and wife and their supporting loved ones. It changes everything that should have been, including the child they should have been.

So when people make decisions that prolong the process, donor centers have long testing times and the systems in place fight against a family for their kid to get a kidney, what they are really saying is….just put the kid on dialysis.

These pictures are from Gage’s first dialysis session on Friday, September 22, 2006.

Scared boy, worried parents.

All trying to hold themselves together and make this feel normal. Short session of dialysis for this first day with a regular session starting the following Monday and another 77 times.

There are many things that I loved about 2009 and many things that are not so great. I will not miss 2009. I’m happy for 2010 to be here and for new beginnings for our family. And while I am looking forward to 2010, looking back is good, and then I’m kissing 2009 goodbye. While 2009 was hard on me and my family personally, this year brought new life to my girl and brought the glimmer of hope for living again for my son. For those two things alone I’m grateful in spades.

1. Kids are resilient to a point. They can hold their literal selves together for a period of time that they have to, but then they can, and often do, completely fall apart.

2. Mental health issues for children are extremely hard to navigate as a parent. Especially when many in health care have a hands-off attitude. If you can’t find services on your own by sheer will or luck, you won’t find services.

3. Helping your 2nd child through a kidney transplant seems like it should be easier. In theory.

4. A sense of humor is still helpful through stressful times. It also helps that your husband is intuitive with diet cokes and your need for time alone.

5. There may be nothing that prepares you for the reality that your child wants to die or wants to kill themselves. Sadly, you can get used to the idea that they want to die. If you didn’t, you’d be crying in fetal position in a corner of your house.

6. Your faith in the basic goodness that lives in people can be restored. By kidney donation, support and love from people close to you and people you don’t know. Sometimes, the basic belief in the good, it is all that gets you through from one day to the next.

7. Naps are essential.

8. People come and go out of your life. Don’t fight it when they are going and welcome it when they come.

9. Never underestimate the power of down time with your family and the healing that is needed.

10. Never, ever underestimate the power of yourself to help end your child’s suffering. Sometimes it helps to remind people that everyone who can help should want the best for them, just like you.

11. Creating time for yourself (in whatever form that pleases you) is harder than it looks, but sweeter when it’s achieved.

One thing I know for sure is that I need time for myself. I am at the beach relaxing and sleeping and relaxing.

The thing about living with the stress of kids who have special needs is that there isn’t much time to be by yourself as a parent. Or if you have time to yourself you have to manage necessary required items for the kids – like insurance, medication, medical appointments and educational assessments and monitoring.

Lately with Quinn’s transplant with the increased appointments, Gage’s unstable mental health/behavioral issues and of course, the extra educational appointments there hasn’t been much time for myself or for us parents as a couple and after a while is gets very draining.

Sometimes it feels desperate and lonely in my world. Like there isn’t anyone else that feels as desperate as I do to hang onto myself. Like I will lose everything about me that is recognizable. Today luckily, is not one of those days.

I’m better at doing things separately that make me happy than Julian. I sew, write, craft, go to movies, see friends, and vacation separate from the family. If I have any chance of being a good wife and mother I need to make sure I keep those things a part of me. An integral part of me.

I have to say, I don’t feel guilty for being here without my family. There are many mothers of kids who have special needs kids who sacrifice time by themselves. For some, the choice isn’t theirs.

There are things with my professional and volunteer work that I am changing or thinking of changing and this is perfect timing for being alone with my thoughts about how best to move forward.

I’m lucky to be here with myself.

Most days I can suck it up and get through it but today for some reason many things related to caring for Gage and Quinn are annoying me greatly. It’s the stuff that is connected to them being sick kids. Here is a list, but in no particular of the level of annoyance.

- Pharmacies. I’ve made no less than 7 calls about the SAME prescription. The doctor says she called it in. The pharmacy says she didn’t. Of course, she is OUT today.

- Pharmacies, Chapter 2. We have some 20+ medications to refill. They are mostly on different days (no matter how hard we try to get them on the same refill days, it never works) and have different number of refills left. So please, person, don’t get snippy with me when I’ve let a refill slip to ZERO, help me get a new one.

- BCBS is making me use Precision mail order pharmacy. I’ve not had a good experience there, I’m sure someone has, but I would not be that person. One of the drugs that Quinn needs is a liquid (she’s too little to take the first mg pill they offer) and instead of the 3 month supply of pills I can get (making the times I have to talk with them lower) we have to order it monthly about 5-7 days ahead, if we would, you know, to make it easier on them.

- Lab draws – Quinn still needs labs twice a week. She only needs to go to be seen in clinic every two weeks so on the off week we go to a local lab with standing orders. But she wants to go to another lab close by (same company) because A) We’ve seen some roaches. B) There is one woman there who very possibly HATES her job more than anyone I know and Quinn has noticed that. Last week she said, “She is not a happy person.” But the company (lab to lab for THE SAME COMPANY) doesn’t share standing orders. So I had to get another form and scan it and email it to the transplant team (I swear Kerrie, you ROCK!) to fill it out AGAIN, meanwhile we missed labs yesterday and today making them once this week. Bad mom.

-Traveling with sick kids. We will be going out of town and Quinn needs those labs but BCBS wanted me to pay out of pocket for the labs (4x, $400-600/pop) and then appeal that they will not pay for regular labs out of town. So I called our very capable (no longer on our case) case manager who just called me with the authorization code to do them and have them billed. She, too, saw the ridiculousness in the situation because you know, it’s to MONITOR A FRESHLY TRANSPLANTED kidney they recently paid $175,000 to do. But whatever. Amber ROCKS as well and after several calls, new forms from the transplant team, 3 calls to the lab 20 miles away from said vacation location we are set. I think.

- Traveling with sick kids, 2 – trying to make sure we will have all drugs in our possession when we leave. Yeah. Not going to happen. FedEx anyone? That will not go well. I can for sure predict that I will be spending some time out of town tracking back a package, pleading with the customer service person that there are kidney-saving drugs on board a truck somewhere.

- Filing for services. Period. Too much paperwork, wait times are unbelievable. Medicaid and Medicare. Which I need to do, but I swear I cannot focus on it until next year.

- Management of a lot of people – the people who manage the kids for school and health, well, there are a lot of people. They manage their education and their kidney function. But you know what? They don’t just do that on their own. I manage them. When I’m working out a situation (like refills, testing, etc.) rarely do I get to talk to the person that handles it. There’s a lot of people in between me and the managers. It gets old.

- Forcing stuff – Quinn is having FITS about one of her meds. She takes pills with ease, and has since before she was 4, but nasty tasting liquids? Lately it’s been a battle. Taking this med is non-negotiable. That doesn’t always bring out the patient, child-adoring mother in me. While we’re talking about non-negotiables let’s talk lab draws. She is tired of labs draws. Twice a week, 3 sometimes. There are screams and they are loud. Throw in an IV infusion to the mix and there is a lot of forcing and holding down the child on my part. I want to be patient, but again? The patient, child-adoring mother doesn’t always have an hour to cajole, in fact, we never do. And that really sucks for her. And when I let myself think about how that sucks for her, I cry.

The relentlessness of the above list makes me sad. Because it never ends. Literally. Never. Ends. Next month I’ll be annoyed about the same things but hopefully not all at once. The thing about it is, I would do anything for the kids to be well and well-adjusted but there are so many strikes against them that it feels like we are always pulling ourselves uphill.

But I guess that is another post entirely.

We had three appointments today regarding Gage’s mental health. THREE. As Julian and I were talking about the various appointments (we split up). Julian got Gage to his psychiatrist and psychologist and I went to the other psychologist (behaviorist).

To recap the mental health professionals (Can you think about the years of education and experience that is working on Gage? Mind numbing.) involved…

Psychiatrist – obviously can prescribe drugs. She works with the transplant team to make sure any drugs she is considering do not effect his kidney protecting drugs, which are plenty. She evaluates and reevaluates Gage’s state of mind through the same questionnaires including questions like:

Do you want to die?

Check One: Always, Sometimes, Never

and Do you feel like things will work out for you?

Check One: Yes, Maybe, No

Psychologist – he is seeing Gage for cognitive therapy. Not so sure about how this is working as it’s only been a few months, but Gage does seem to be opening up to him. With the recent med change (upped anti-depressant) he might be more talkative than he has been so I guess this is a step in the right direction. I think there aren’t a ton of people that believe cognitive therapy can work on a child so young, but we’re trying it. We like the doc and Gage doesn’t fight going and so it can’t hurt at this point and it might help. He’s also next door to the psychiatrist which is helpful.

Psychologist – he is our beloved behaviorist that we’ve been seeing on and off since Gage was 6 years old. We’ve reengaged him after nearly 2 years because he’s got some good insight to kids behavior. I think he also looks at Gage like a boy who can change, which pleases me greatly. This is more important to me than one might think. For me it goes back to someone believing when I don’t. I find his belief comforting. We are going to tweak the behavior plan. And the good doc is going to join us at a meeting with his teachers. So at $160 out-of-pocket for an I-don’t-know-how-long gathering you had better believe that we will use his knowledge.

Throughout the day with the doctors and recently with several teachers we’ve heard many things about Gage (truth be told we hear stories like this all the time about Gage)…

PE Teacher (Gage has had several issues in the past with this teacher):

Julian: “So how is Gage doing in your class?”

Teacher: “Gage is just Gage.”

Special Ed Teacher

Julian was picking up Gage early (for said mental health appointments) and ran into the special ed teacher and they were talking about the day and how it went (as we do each grueling day) and the door to Gage’s regular classroom was closed.

Julian: “So, the door is closed, what’s the protocol?”

Teacher: “You are getting Gage, I don’t think she really cares.”

Psychologist (behaviorist)

Today we were discussing Gage’s frustration level and how he shuts down and melts down doing school work he thinks is too hard (all of it).

Doc: “He probably doesn’t just need help finding the words, he might need the words.”

Meaning we have to teach Gage emotions. Honestly? I can see that we need to go back to basics on this.

Psychologist (cognitive)

“I tried reverse psychology but he was on to me.”

His mainstream teacher (discussing ignoring negative behavior)

“You know, I try not to pay attention to some things he does, but he is just funny, I can’t help it, he makes me laugh.”

His Spec Ed aide (she wants to get Gage through 5th grade and put off retirement – I am not kidding. Except I fear with their year she has changed her mind)

Everyday she says the same thing to Gage: “We’ll have a better day tomorrow.”

Nearly everyday she says the same thing to us: “He didn’t do X and he didn’t do Y, and he tore up Z.”

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That is just a sample. My head hurts.

Oh Gage, I know you aren’t happy much. In fact, when you are happy we notice it because the moments come so few and far between. Occasionally we have a camera on hand, like last week’s impromptu trip to do something, anything outside in the beautiful sun that Atlanta offers in November. The cemetery you love and have visited many times. You love the big stones with designs, you are respectful of the graves, you like to see if doors are unlocked and you try to move fallen flower pots upright.

One thing I’ve always noticed about our trips to cemetery is that you always want to know how old people are who are buried there. From the tombstones we count the years. “How old is he?” you say to me. You notice the babies and kids buried there with interest and we talk about their lives. We talk about their parents. We talk about how in 1901 that there weren’t many doctors and treatments and that those babies aren’t as lucky as you and Quinn are to get dialysis and kidneys. Because a long time ago they didn’t even have medicine and doctors to take care of you.

I always let honestly lead me when we talk about the death of children. I always say, yes, they did, but they didn’t have what we have to take care of you. I say that Mommy will make sure that you and Quinn always have the right doctors and medicine. I say that Mommy is not worried about you because you are healthy and strong and you have kidneys and medicine and you have me and your daddy. And there isn’t anything we won’t do to help you live. To be happy.

And I promise to always help you through whatever you are feeling, even when you don’t understand it and don’t want to. I know that the cemetery brings out these conversations, but you still want to go and so we go. And I will always talk to you honestly and I won’t ever shut down the talk about death because it is a part of your experience as a child. I wish it weren’t because each time we have to talk about death to help you deal with your trauma a little piece of the innocence inside of me as a mother leaves me forever.

But we will deal with it together. Always.

I hope that by doing that you will return to us. Little by little.