If only we would discipline him more.

Quinn’s Potential Donor #1 emailed me early to let me know she was at the hospital waiting for day one testing to begin. She just sent me a text to let me know that she was already drinking a diet coke at a pizza joint.

I don’t think she should be drinking diet coke, do you? Because you know, we get to have some say-so now.

Quinn is pretty tired these days often sleeping 13-14 hours a night if we let her. It is the nature of kidney failure. You just want to sleep and not eat. Except Honey Buns apparently.

Quinn is amazing in that she wants to do swim team this year. I hear “She doesn’t even look sick!” all the time when we talk about her getting a transplant soon. That is what PKD is…near invisible. Tuesday night she was at the pool something like 6 hours before the meet was called off due to loss of power. There was such a difference between last year and this year. Last year she wanted one of us near her while she was in the bullpen with all the girls. This year? Practically disowning us once we were in sight.

She’s a piece of work. Or as Dr. Wonderful has said many, many times, “That Quinn, she’s a mess!”

Oh how I love her and how I love that QPD#1 might be able to give her the chance to side step dialysis and have a better quality of life. Quinn deserves that and so much more for the big life she’s had since those words I heard when she was two days old , “She has polycystic kidney disease, and she’ll need a transplant to survive.”

That was nearly 8 years ago, and yet tell I get choked up and tears fill my eyes when I type or say those words today. Sure, I’ve moved on from that day and become the mom to the kids that have needs on top of needs, and a mom that is mostly accepting and happy.

But I’ve not forgotten how desperate I felt those first few days of learning what our family would deal with (and even then I didn’t have a clue) for Quinn and then learning Gage had it too. And then beginning the treadmill that is our existence, while trying to balance the needs my marriage, my friends and family – and somewhere trying to hang on to my own needs. And figuring out my needs change nearly as much as the kids. When Quinn was born she threw my little world off its axis, and it’s not quite been the same since.

And Quinnlin Bay? She deserves every chance that QPD#1 is trying to give her – I don’t mind saying that. She deserves the chance to bypass dialysis. She deserves to do everything a healthy body will let her. She deserves that and so much more. And QPD#1 sees that too. We’re so lucky.

See? All this drama that is my life right now left me totally failing to acknowledge two very important dates! Gage and Jody’s Kidney Transplant Anniversary – April 27 and May 27.

These last months with Gage? Pretty traumatic for all of us. Dealing with the mental stability of your child who wants to die is well, bottomless-pit-heartbreaking. But I have to say, through it all, I was glad he was living. I was glad that he’d been given a chance by you Jody, to live off of a machine.

The machine? Life-saving, yes. But the impact of living such a life? Sucks.

Back to you. As we embark on our family’s 2nd bout of in and out of body kidneys I want to thank you. I feel like you trained me as the mom to a transplant patient in how to deal with a potential/then donor. I think we did alright, you and I. I’m grateful for how you let me be involved in your process as you tested and got almost approved, then approved.

Thanks for the support of your family. Thanks for praying for my boy to live. Then giving him a chance. Love you. And your rockin’ diet coke, chocolate trained, gently used kidney.

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

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

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

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

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

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

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

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

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

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

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

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

And I miss him.

I didn’t just wake up one day and have multiple medical and mental appointments, emergency room visits with face masks, or juggle 22 medications for two children and an adult relative.

I eased into it over years. The kind of caregiver I am didn’t just develop in the first weeks of knowing about Gage’s OMA or Quinn’s PKD. The kind of caregiver I’ve become grew out of parenting the kind of people Gage and Quinn are and also some intuition about what is the right thing to do in advocacy.

When they have a need; I try to meet it. On any given day that’s not so different than millions of other moms now and before me. The difference is that I have those needs and the unspoken, unexpected ones to meet, too. Needs that come out of their disease, their academic challenges, and their emotional problems as a result of these challenges.

I’ll be honest. I don’t always want to do what I have to do in fighting for the right thing. But sometimes you can’t just turn away from what you know is the right thing. And that’s where caregiver stress comes in.

The stress comes and goes. And the strength at which I appropriately deal with them comes and goes, too. But I must always deal with them. When things get complicated I just have to plow through it. There isn’t something magical about plowing through it either; I just ignore some other parts of my life and do it. It’s what most people do. Deal with the unexpected messy things that come along with doing what is needed.

Sometimes I have to ignore friendships, my home, my work (Billing! Which I love to do!), my family, my own needs, and my marriage. It is just the reality of a busy life that includes taking care of special needs. Again, I know all moms are busy – for one mom it might be life PLUS homeschooling, another life PLUS managing athletic kids, and yet another life PLUS two outside-the-home working parents but for me it happens to be life PLUS a life-threatening disease coupled with educational special needs. After my PLUS is a constant emotional trip that never ends. When there is a lull, it’s the time to get ready for the next crisis. Which always comes.

Pushing aside my own needs isn’t a choice. It’s necessary. Sometimes we don’t always get what we would choose, right? Sometimes I have to put my head down and not look around and see what is missing in my life because well, that just doesn’t benefit me. Luckily I’m not the day-dreaming kind. Otherwise I’d spend my entire day wishing I were doing anything but what has to be done and it’d be counter-productive. And it just increases the chance for crisis because you aren’t paying attention to every detail of what might go wrong. And what caregiver doesn’t already have enough crisis in their lives? I know I do.

Caring for those with special needs can be all-consuming at times. And for me, right now it is. So, I’m missing a part of myself right now. But that is what doing the right thing means. Could I do less of the things I could give up? Yes. But I don’t want to lose those things either because those at least tie me to the Julia I am, which make me the caregiver I am and help me remember what other needs of my own I’d like to meet, too. So where do I fit my own needs in? Well, I don’t. For this period of time, I put my needs aside because of the greater need. That’s not to say that my needs are unimportant, they are important. It’s just to say that for now, they can wait. Because that’s was caregivers do. Hence, the stress that comes along with all this caregiving.

* Oh good lord how self back-patting this all sounds, like I’m awesome and all-knowing about dealing with special needs. I get that it sounds this way. It’s me really just working through my feelings and explaining to myself why I push my needs aside. While I know my family and friends think I’m awesome, because that’s what family and friends do, I’m not feeling my own awesomeness.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So shut the hell up.

Sometimes we all see a glimpse of the old Gage. And we long for him. There’s nothing wrong with cotton candy. In fact, it brings out the best in people.

Someone I spoke to today about Gage’s mental health issues said it and she was so on target, summing it all up perfectly:

“We’re as happy as our saddest child, aren’t we?”

She knew of what she spoke.