Last night at dinner Gage accidentally passed gas.

Before being in-patient (and treated for an on-going mental condition or three) he would have maybe grinned a fake smile but then he would have put his head back down and stared at anything but another person and maybe he would have eaten or he wouldn’t have eaten. But he would have not connected with another person’s eyes.

In stark contrast to the past, last night he started belly laughing. He could not stop laughing, which only made him fart more, which made him laugh more. I had enough time to put my fork down, walk at a normal pace to get my camera from another room and snap some pictures of him laughing. He didn’t mind me wanting to get his picture, he didn’t stick out his tongue or turn away in disgust.

I have some natural laughing pictures of my boy. It’s been ages since I had a month or more worth of pictures of Gage smiling. A real one at that.

I told Julian later last night that I’d forgotten what it has been like to hear him laugh, really laugh. I’d missed it over the past two years. As to not be disappointed I just stopped believing we’d get him back to a happy child. I hoped for sure and I kept (and keep) moving forward to help him but to a large degree I just accepted that he could be that way forever.

Honestly, I didn’t realize that I’d been doing that until last night. I’m kind of sad about that but obviously it is what I needed to do in order to survive as his mother. I had to love him through being horrible to me, us, hating himself and his life and generally making all of us miserable. I think I figured that if this is how it’s going to be, well, then I had better learn to cope. Now that I’ve had some time away from the chaos (I mean that chaos, not my regular life chaos) I’m starting to have flashbacks about how truly awful it was during the worst.

Obviously I wanted a different life for him and the glimpses of the old, happy Gage are helping me remember what his life was like…pre-death wishes, sadness, tears of a dark, dark pit of despair.

Watching him now I mostly feel grateful and cautious, in equal parts. Because if there is one thing I have learned through the last 11 years is that you never know what is coming around the next turn; a dark corner or the belly laugh.

One month shy of 3 years ago Jody gave a Gage a kidney. Five months ago today Cheryl gave Quinn a kidney. Together the two of them have given a lot of months of kidney function to my kids.

The numbers amaze me sometimes, honestly, they do. Because it’s been a long road for the family. Gage, while doing better now, has been a mess for a couple of years. I’m so thankful that during that time we weren’t dealing with kidneys that didn’t work or dialysis in addition to the crazy. Because, sometimes, as we like to say, it’s just too much. Quinn’s transplant happened in the middle of the escalating problems for Gage but it could have been so much worse.

Jody and Cheryl raised their hand to help because, for them, it was the right thing to do. Not everyone does, but more people can. The overwhelming theme that the two of them came back to as we moved along in the journey was that they wanted to give Gage and Quinn a fairer chance at life, which had already handed them several challenges. They decided, for that and many other personal reasons, they wanted face some risks and sacrifice an organ to all my kids. But they really just wanted to improve their lives.

When I think back to the time when we learned Gage couldn’t get a kidney from either of us parents the feeling I remember was fear. Fear of the path ahead that could prove or not to be even a bigger challenge for my boy. Over the years many, many people said they would donate a kidney. When the time came we had 5 people in line that had talked to the transplant coordinator. Four were in town, one out of town. Five people and 4 who stayed in line when Quinn needed a kidney.

We knew Cheryl matched Quinn because she was 2nd in line to donate to Gage. Over the nearly 2 years between Gage’s transplant and Quinn’s testing she would periodically check-in with me and let me know she still wanted to donate. She gave me a great gift throughout the months of waiting. She let me believe that it would happen; that she would be able to donate. She let me focus on Quinn and her needs and Gage and his needs and not have to focus on where we would find a kidney.

Looking back at the 4 year journey to their transplants I marvel at our family’s resilience. I’m proud of my kids, proud of my marriage and proud that I survived with my sanity (we talk a lot about this) in tact in a way that has allowed me to grow and learn from the experience. I’m happy that our family is still surviving, together.

Jody and Cheryl gave us that, as did the other potential donors (S, B & C) because by being willing – even before testing had occurred – we felt like they would each get a new kidney. We were not without a lot of hope.

Our donors and potential donors are like my hope makers and reminders. Their willingness to give so freely is my reminder that others can make a difference in our lives so it is a good reason to always share our story. And maybe, just maybe, if I keep sharing too, that others will benefit.

Thank you Jody and Cheryl for sharing. For sharing your love, your kidneys, your families and your hope with me. Your lives and your example of doing good and helping others continues to amaze me daily. Each time my kids wake up and are alive I think about you two.

We love you and your kidneys – all of them.

Last May I was blogging for 5 years. During these years I’ve been able to laugh, cry and vent about what it’s like (for me) to raise these kids with intensely serious issues involving developmental delays, medical issues and mental/emotional problems and I’ve been able to process things so I could become a better mother and advocate.

The blog wasn’t always a place for me to process this life. Early on it served as a way to share updates with family and friends without placing the burden on me to contact them, so it was selfishly an easier way for me to live. But it became so much more to me. Sometimes it was the only place that I could come to release what living this life is like from my insides while preserving the woman I am outside. The woman outside the mother and advocate.

The blog was always a way I could record what I was feeling about the experience of whatever drama/trauma faced us as family as a result of developmental delays, failing kidneys and behavior plans. It has become so much more I’m learning. It became a record for the kids. It became a place where people could identity or learn about helping a student or a friend with sick kids, or as I learned today, because of a delurker’s comment – a way for a researcher to stay motivated. It became a place where I could find comfort in knowing I was not alone. I didn’t know that I would find people that would reach out to me in tangible ways with friendship, information, compassion and understanding.

I love blogging. I love being able to experience it and write about it to get it out of me. I love the act of hitting publish and knowing that on the other end there are witnesses to my happiness and my despair. I love getting comments and private emails to offer support and advice. I love hearing from Julian that someone mentioned to him a blog post about him. I love to give him a hard time about not reading my blog (“I live it! Why would I want to go through some of this twice?”). I don’t feel so alone about our experience because of blogging.

Gage and Quinn know I blog about our lives. Big or small events. The kids often ask if I’m going to blog something when it happens. They know that everyone can read it, including people in their school. They know what that means.

I blog. Our family is public. It’s what we do.

Living a public life is sometimes hard, obviously. I know that it pays to have a thick skin and sometimes that can be hard when you are vulnerable, which is the situation I was in during the days during and after Gage’s hospital stay for his mental state.

But that is not where I am anymore. I’m feeling strong and sure and proud that we were able to find another way to help Gage. Gage is doing better. But as is the case with any mental health issues it is a dance. A long dance, not always good, not always fast or slow, but always present. We don’t know the next move until we get there so we don’t have a leader or follower but we know we will be dancing for a long while.

I want to share this experience, too. Gage’s mental health is every bit as serious as kidney function and failure and deserves every bit of understanding and compassion as he has ever received. This blog has always been honest and I won’t change it because of a diagnosis. It’s a place to express and share the very real experience of one family’s journey.

This blog isn’t a place to lie. It’s not a place to hide or feel ashamed of a mental health condition. It isn’t a place that people should come to use negatively out in the world, even if it is just our little corner.

And it isn’t a place for me to tell part of the story either.

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.

Today marks 4 months (Really?) since Cheryl gave a kidney to Quinnlin. A day doesn’t go by without us being reminded of your gift Cheryl. We see your gift in Quinn’s smile, her energy, her pee, her whining. She is alive. She’s not on dialysis and we are extremely grateful that our current life doesn’t involve 20 hours a week to keep her alive.

Quinn is doing pretty terrific right now (less the foot thing, obviously) and we have you to thank. I hope life with one kidney is going great for you, because it looks pretty good here.

Love,

Quinn’s grateful momma.

PS – while I missed Jody and Gage’s kidneyverary on the blog I did also thank her that we were 34 months since Gage got his kidney from Jody. And seriously? The fact that his kidney function is the least of our problems with him is pretty good, too. And thanks for the food you brought over yesterday.

In list form because then I don’t really have to be coherent. I know you understand.

- When I woke up I realized Gage wasn’t in the house and I started to cry then Quinn said, “Mommy!” and I said, “Good morning Quinn!” all excited because she had a performance at school this morning and she deserves for me to be happy about her waking up to perform. Which was extremely adorable, by the way.

- Many people in our Village are offering their love, support and prayers. Along with food and help and wow, again, after having just called on all of that for Quinn’s transplant you still want to help and I’m overwhelmed with love and warmth. Your love surrounds us like a blanket.

- Already working on next steps for Gage’s IEP stuff. One thing I know, until we have a meeting about the recent incidents and without the team having more information (which I am not willing to share here yet)  it is way too early to speculate on where Gage will go to school when we returns. I believe that with proper meds, an adjusted IEP, therapy support increased and more understanding about what is truly going on with Gage, that our school can serve him. But there will obviously be changes to his IEP. But speculation? Not good.

- What do we need? Prayers, love, support, understanding.

- Quinn hurt her foot last night and I thought it was broken, then I thought it wasn’t. Then I was going to take her to the hospital but she had a performance this morning at school and so we said, if you can go to school, great. If it’s too hard to walk, we will take you to for an xray.  She can walk on it, it just “hurts real bad.” But still.

- I have a meeting with the social worker and Gage tomorrow at 2:30. Apparently it was a rough night for him. A safe room, with one-on-one care, which he desperately needed. Today was better, even without sedation, but still bouts of anger/lashing out. However a new med is being started this afternoon, so I’m anxious to hear if that helps him in the short term.

- Julian and I are doing okay. I am joking when he’s upset, he’s joking when I’m upset and so it balances out. We did have one fight about a fax of all things. It lasted about 20 seconds when HE REALIZED I WAS RIGHT. Yeah, he’s great like that.

- I am without a doubt running on pure reserves. Reserves I guess that I’ve stored up since Quinn’s kidney transplant 3 1/2 months ago. Is that enough time to store reserves? Hell no. Which means I’m in negative reserves.

- I spoke with Dawn earlier and it was good because I can make really inappropriate jokes about my son and she can handle it. Not so with Grandma, I’m sure.

- Wow am I glad for my work. Honestly. I’m not just saying that because some clients read my blog either. It makes my life seem normal when I can do my normal things.

- We’ve cried a lot in the last 24 hours. A lot. Some from sadness, some from relief, some for each other, some for our family, but all for Gage. Wanting so deserpately to help him have some peace and happiness. Like the kind of happiness from cereal boxes which sadly always eludes him, no matter how much we try. Sure, he can be happy about a thing or an activity. But true blue happiness? Not seen that for a while. Too long if you ask me. But I’m just his mom.

- The good thing about him being in treatment is that the doc gets to see the worst. One thing his other med doc didn’t. She is very conservative and didn’t always want to act on what we told her about Gage. But this doc? He’s treated kids like Gage and that gives me great comfort.

- Must go, because really, I’m taking my girl to the hospital for an x-ray. BECAUSE MY LIFE IS CRAZY.

All typos and crappy writing must be forgiven today.

Gage had a full on melt down after school. Three hours long with a lot of destruction. It was the 5th since December 31st but we’ve been unable to find a concrete trigger.

He’d had an okay morning but wasn’t listening after recess and then the teacher made him go outside to pick up something and he said he threw it behind a gate and so she told him to get it and there it was…the irresistible item known as a breaker switch. It turned off the power to the entire gym while kids were in there playing. Obviously, not good.

The principal wasn’t there today so we will talk to her tomorrow but it is serious. He knows it’s wrong but cannot for some reason control his impulses. When we got home I mentioned he had school work to finish and then it went downhill. He spiraled into a state we’ve seen 4 other times and it was manic-like. Crying, destructive, hateful, hurtful, threatening, mean but also, sad, sad, sad. Crying uncontrollably for 3 hours.

I remained calm through the entire thing. I filmed it (wanted to have it for therapists) with the flip and ran out of battery before the episode ended. It involved me hugging/holding (against his will) and a lot of tears.

When he calmed down (hours later) we did homework and then we took down his bed and computer (because he damaged the bed and the many things he was throwing could have knocked over his computer.) Right after the episode I told him we were taking his computer away, “Fine! Throw it out then!” So we are giving it to Quinn.

We’re simplifying his bedroom so there isn’t so much to throw, damage. For now his dresser is cleaned off, no ceramics, trophies with sharp edges. Right now he’s got a mattress on the floor and that’s just fine. Less is more, as they say.

I am not sure what the repercussions are at school. I guess we will know soon and go from there. But some conversations are going to be taking place between his therapists, teachers, and us to figure out the next step in treatment/behavior management. We have to be able to figure it out with us and much smarter people.

What’s sad about this is that is always takes us a day to get a parent legs back. We were in such a state last night that we could barely talk to each other about it. It’s like we’re in a war zone and we know how bad it is but voicing it seems just like putting salt in the wound.

My sister called, she is a teacher, and has a lot of experience with behaviorally challenged kids and she gave me a lot to process, which is good. She offered to come down and visit alternative schools with me when we are ready (for middle school) and so we’re surrounded by people who care about him and us and sometimes that, and kidney function is all we feel like we have.

Last night at the end of the episode we had tears, hugs, a cocktails, and dinner (post kids’ bedtime) provided by my BFF who offered dinner before we knew what our evening would look like. Sometimes it’s best to just move forward with the plan because the normalcy of that just helps.

As a parent to sick kids I think an important, even vital part of our relationship as caregiver/patient is for them to see me advocate for them .

There aren’t many times when I’ve lost my temper, but if I do it’s usually for a good reason (at least it is to me and my kids). I can think back to the time that Gage was in so much pain he couldn’t stand, sit, or move his neck (catheter #2) and the surgeons nor his dialysis doctor were addressing my concerns about his pain, the time Quinnlin had 3 ultrasounds for the same test for her transplant evaluation and the last one resulted in her missing a day of school and me a day of work. There are also the many times that our time isn’t counted as valued. An example is when the clinic won’t/can’t order infusion meds until the IV is actually IN the arm – when it makes sense to order the med when we check in instead of the hour or sometimes later than an hour, as such was the case last Thrusday.

I’m fine with the kids seeing me upset when it’s appropriate, in fact, I think it’s a learning tool for them for when they are their own advocates. It’s just the truth, but health care people just don’t see what we see and they can’t know how it feels from our perspective – whatever it is.

If I’m to teach them the regular things about caring for themselves by being an advocate – even an upset one – is part of the package. I want them to grow up to take care of their kidneys, handle their meds, listen to their bodies (hence the E.R. visits when the kids ask to go) and to be inquisitive about what is happening with treatments and tests. The only way I know how to do that is by example.

So today, when I call the patient advocate, I don’t really have to. But I have to. It’s my responsibility to my kids and for other kids. They deserve the best care AND the best customer service that the health care community can offer. Would I rather not? Of course, I have other things to do, just like every other parent on a Monday, but I want to be able to tell Quinn that I am trying to make the impact of her treatment less of an impact on her already impacted life. When we go in next month I want it to be different for her and I want her to know that I did that and she can, too.

The problem with this is that you always feel like you are complaining, which can be quite the reputation to have when you work with people every week. I strive to show respect for the people and frustration for the process. There’s a distinct different. The people who are ordering the meds or putting the IVs in aren’t the ones that make the policies, they are just the facilitators. It’s the hospital policies that are usually in question, or the “way we’ve always done” mentality.

All I want to do is just to change some of the way they’ve always done it and when Gage and Quinn are older I hope they will do the same.