I’m here in Chicago at the PKD Foundation’s training and Convention. I get to be with friends that I have developed over the years; special, special friendships. It is so fantastic to be understood without saying a word.

I’ll be forever grateful for the opportunity to be among these people and to help serve with them. Being with people affected by and with PKD is always a moving experience for me; one that keeps me motivated for a long time.

I get to celebrate the victories of life and the sadness of fear with people who don’t need an explanation of why. My close friends here, especially, allow me the chance to scoff at the ridiculousness of my life. I can laugh and I can cry freely without the fear of making other people uncomfortable. It’s a gift they give me each year and one of the reasons I come back.

I’m so thankful for Julian recognizing that I belong here, too. Because without his support I could not do the work of the Foundation.  I’m thankful, too, for the many people in the Village (including my sister Tammy who just cleaned my house) for helping J take care of the babes.

I can only express my thanks in going back recharged to keep fighting. To end PKD, to help my kids and Julian live a better life and  to be a better citizen to the world around me.

And I get to see my favorite doctors. Don’t tell Julian but my crush doctor is here. And I can’t wait to see her.

Today is a good day.

Gage had a horrible day. The babysitter said that in two years, she hadn’t had such a bad day with him. Timeouts barely made a dent and just seemed to fuel him on.

By the time I made it home, he was in full performance bad attitude. Some of his behaviors alone weren’t anything out of the usual (sad to say). It was altogether the behaviors that posed the real problem. Disrespectful, destructive, out of control.

The next few hours that ensued were nothing short of a disaster from all parties (well, except Quinn, who really was an innocent bystander). Timeouts, his yelling, our raised voices. It was ugly. We talked about the reasons why he might be feeling badly and there was a lot of crying with half answered questions.

At 8pm when I went to get meds ready I realized a bad mistake. Gage took his night meds during the morning. That didn’t impact his anti-rejection drugs, but it did impact his behavioral (concerta) and his antidepressant (zoloft) med, plus he took melatonin, which helped him be calm during the morning hours with the sitter.

Julian was upset and had to step outside. Tears were shed. I went upstairs to let Gage know why he was so out of control. He was in bed crying uncontrollably. I told him what happened and asked him to come to me and we would cry together. Because it was a bad day. And while he is responsible for his actions, we knew why he felt out of control. That daddy felt terrible about him not having the right meds, but we’re human and we make mistakes. But as a family we would get through it and tomorrow will be better. He let me comfort him by holding him while he was crying and I kissed his head. Which he never lets me do. So I guess if there is a silver lining…

“Tomorrow will be better Gage, I promise. That is the good news about tomorrow, it will be different and can be better.”

“No it won’t.”

“Yes it will. Because you will have the right meds and they help you. But you know you have to tell me when you feel out of control like that again, okay?”

“Why did daddy mess up my meds?”

“Well, sometimes we make mistakes. We’re human. All we can do is try to make it right with the people involved, like you and Quinn. Both of you had a bad day, you know.”

And then we cried a little more and then Gage and Quinn saw Julian cry too, and it was a cryingfest that left Quinn wondeirng what the hell happened to her family.

So that is how we moved on from today. We cried and then we laughed a little bit, too, about how adults make mistakes too but how we need to own up to them and tell everyone involved we’re sorry. Gage let me say a little prayer with him because he was having a hard time letting today go, saying “I can’t stop thinking about today to so I can go to sleep.” So I prayed for him to only think about fun things like trees and poptarts and fixing things and taking them apart and of bottle caps. And he let me hold his hand the whole time.

And then we will wake up tomorrow ready for the new day.

We know Gage can be hard to be around sometimes. He can be inappropriate in what he does and says. He can be destructive and he doesn’t always do the right thing.

But he can also be charming, funny, sweet and engaging.

Unfortunately a lot of people don’t always get to see the nice side of Gage and sometimes they don’t even want to look for it. That leaves us with a lot of people in our everyday life who don’t like Gage or care to be around him.

One day Julian was nearby keeping an eye on Gage, as we often do, and Julian heard a person saying something about Gage to another child. Julian asked this person if they were talking about Gage, they said said no, and got in their car and left. Then the adult came back a short time later and told Julian that they had lied, felt very badly about doing it, but yes, the conversation earlier was about Gage. They felt bothered about the incident and decided to come back and apologize. For which I have a lot of respect, honestly. I have a feeling it just bothered them though that Julian overheard it, not that anything negative was said.

Sometime later I saw this person, who I had politely acknowledged over a few days and they approached me. Really, they didn’t have to, I had just made a mental note to be extra attentive of Gage if they were around. But this person came up to me and said they were sorry for what had happened and that they actually had a soft spot for Gage. They just hadn’t realized it was Gage when Julian overhead them.

The conversation this person and I had was uncomfortable because I had to tell this person many of type of following statements…

“It’s okay, we know a lot of people don’t like Gage.”

“It’s fine, really, we know a lot of people don’t know how to take what he says or does.”

“It’s just a part of raising Gage, realizing and accepting that a large majority of people don’t like him. It’s a part of our everyday life, so it is something we are used to.”

“We understand that you may not like him, it’s okay, really.

“I accept your apology, and I appreciate you saying something.”

“We understand it’s hard for people to accept him. This just goes along raising him.”

“We know that generally people who aren’t close to us do not like him.”

“I don’t know if you know, but it’s been a really hard year for him…blah, blah”

This person was visibly upset and said they didn’t want to be that type of person. Unfortunately it happens. This person just happened to be called out on it and had to face their own judgmental attitude, which isn’t easy to do.

But it’s the reality. Human nature. People are judgmental. They see Gage doing or saying something he shouldn’t be and they judge. They judge us as his parents and they judge him. They pull their kids away from him and they isolate him instead of interacting with him in a way that helps him learn. And Gage’s world is just more limited and feeds into the cycle of isolation which has limited friends and social interaction to begin with.

But, having said all of that. I understand. I’m just sad that we have to know that people don’t like him, or that people don’t give him a chance. And what’s more, for the record, when your kids are having medical, social, and emotional problems you don’t need people to shun you - you need more people to embrace your family. You need, most especially, more people to embrace your child.

People really are missing something special when they bypass getting to know Gage. When he’s engaged, as he is a little bit more these days, he’s full of ideas about inventions and he sees the humor in life. He’s a mischievous thinker as well as problem-solving. The few friends that he has really like him. They think he’s nice and funny and wild and they like being around him.

I wish more people did, because honestly, it’s hard. It’s hard emotionally to face that your kid isn’t liked. But it’s not the end of the world. Gage is alive. And slowly but surely he’s engaging with life again. I’m grateful for his life. The hopes I have for his life involve a greater self esteem, that he will have a few best friends through life, that he graduate high school somehow, and find a job he’ll be happy with and that has insurance benefits. I hope he won’t kill himself.

See why I can’t spend too much energy on worrying if people like Gage? As a family we gravitate towards people that see the spark in him without us having to point it out. And I’m forever grateful for those people - the few parents that encourage their kids to accept and have friendships with Gage, adults who are in his life who appreciate him, the friends of ours that accept him the way he is, without judgement. You know who you are.

When you are caring for a couple of sick kids it means you have to be in front of a lot of health care professionals. Doctors, nurses, assistants, insurance staff/accounting, technicians, clerks. You come into contact with a lot of people and a lot of personalities.

On any given week we’ll see 15-20 people in the regular care of Gage and Quinn. When the situation calls for more care (um, like, you know, a KIDNEY TRANSPLANT) there are just more people (and paper work and tests and results) to navigate and manage. As in life, you don’t click with everyone you interact with on a daily basis. People rub you the wrong way (you rub people the wrong way) and they are dismissive and insensitive. Some are dismissive in a way that is condescending. Which can be both infuriating and eye-opening. Because that probably isn’t going to change on the 2nd, 3rd or 20th visit so it’s best just to find a way to deal.

What I want for one of my kids doesn’t always line up with what their health care providers believe is best for them. And that’s okay. But it’s not the last word.

That’s why they invented The Second Opinion.

It doesn’t matter what the issue is; it is your business, your right and your responsibility to get your questions answered. That is why there is a 2nd opinion.

Getting along with everyone, everyday just isn’t possible, you know? Sometimes you can’t change providers; the options are limited in your area, your hospital or specialty and you have to work with who you’ve got. It goes back to intuition. Follow your intuition. Always.

For my kids, it’s my responsibility to make sure I follow my intuition no matter who is providing care - from front office to doctor. Sometimes I have to be creative in managing all the situations. Sometimes it is okay and right to push back. And you know what happens? People get pissed off. And you know what else? I’m okay with that. Because when I’m tucking my kiddos in bed, never, anywhere in my thinking about the day behind us is one thought about who I might have pissed off while being their advocate.

It’s been a busy week of fulfilling some work that has to be done for all the special needs loved ones in my family. Just the short list…

- Two appointments for my nephew. Sent off for some paper work that might allow him a chance to volunteer somewhere and had to send some follow up paper work for him.

- Filled out a questionnaire for Quinn - a transplant med fund raising account. I hope we qualify. They match up to $10,000 that you fund raise. An awesome program from an organization called Georgia Transplant Foundation.

- Faxed Quinn’s labs to her transplant team (labs are ordered by her nephrologist). They are concerned about her liver numbers and the numbers are being sent to the liver doc - might mean hold up on transplant (that is, IF our potential donor is approved) to get clearance from liver.

- I sorted about 200 sheets of paper from the last few months for the kids - medical and educational. They are sorted but not filed yet.

- Picked up and working on getting the paper work filled out for the Special Ed department for Quinn’s possible home bound schooling at the first of the year IF she gets a transplant this summer. Delivered said paper work to her doctor to sign. Need to get back to school in the next few days.

- Found two buried prescriptions for Gage (one controlled substance and not easily replaced) and had one filled. Then left it in Julian’s car. Which was parked 25 miles away at the airport. Of course, Gage needs the med in the morning, so a trip to the airport with Carol midday to locate his car.

- Filled out an 8 page questionnaire on Gage’s behavior/personality for a possible group therapy camp this summer. The camp is $900 (2 weeks, 3 hours a day). Double ugh. There were questions like…”What strange things does he do or collect?” and “He is mean to people. Very True? Somewhat True? Not True.” That was some fun, let me tell you. Gage is in crisis even if he is holding himself together (barely).

- Locate two teacher questionnaires to turn into the group therapy people. They would be located in the 200 sheets of paper. Deliver it all to the people.

- Take paper work and nephew to an appointment Monday. And follow up with two calls for a follow-up appointment to the first appointment.

- I had to filled out Emergency Contact forms for Camp Invention that the kids are in this week - always takes a long time because I have to list meds and phone number to very important people - like their docs.

- I had to get some important papers put in our safety deposit box.

- I did invoice some clients - which makes many people in my life happy.

- Tomorrow, another appointment for the nephew and paper work for a program for him. Cable company is coming to replace the DVR box.

- Collected and noted the amount of urine Quinn output in a 12-hour period. Got report to transplant team. Am advocating for removal of one kidney.

- Last night around 12:30am I started writing some copy for Julian for a conference. He didn’t make me do it, but I wanted him to be able to look it over this morning because his deadline was today to get it to his email blast person, who is going on vacation.

- I did get to organize and file a bunch of stuff at the office today. I think I get more done when my beloved it out of the office.

That’s about it. For a moment today when emails were flying between Julian, QPD#1, GD#1, QPD#1’s husband and myself about Quinn’s impending transplant and schedules and news about hearing or not hearing from coordinators, then news about Quinn’s worrisome liver numbers I kind of freaked out. I mean just for about 1 minute (I’m serious), then I remembered that it’s just best to keep your expectations low. Like we don’t think anything for us will go smoothly so we expect things like this.

At least I was distracted by paper work.

-

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.

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.

Just 24 hours ago I had a call from the school. It was about Gage and he was being, well, Gage, but Gage revved up. He was being destructive with school property and disrespectful and could possibly be lying about a pretty serious incident.

In all honesty, he’s been on his way to this for the last 4-5 days. He’d been rough on Tuesday morning and the day proved that he couldn’t get it back together. So yesterday, while I was sad and disappointed for Gage, I wasn’t all that surprised. Suspension was discussed, but you know what? For a boy who hates, hates, hates school right now? That would be a perfect end to a horrible year. Get to spend your last week at home. Turns out for Gage that would be a reward. The school is very supportive and know we are fully engaged in the situation with Gage and probably somewhat give him/us some leeway. Which is the right thing to do in the case of Gage, but also very appreciated by us. Gage just can’t be “rewarded” with time out of school.

Julian was traveling and it was going to be a jam packed day of a psychiatry (timely, right?) appointment and piano for Gage, swimming for Quinn, anyway, so what’s a little school crisis?

Gage was pretty much shut down the entire appointment with the psychiatrist. He did answer yes and no questions with a nod. All we know is that he is angry and sad and doesn’t know why, but he feels it in his stomach and brain. And he looked sad. I could feel his sadness and frustration in the room. This is probably one of those cases where way back when in October she said, “it’s going to get worse before its gets better” things, or it is a manic-like state consistent with depression. But she was quick to say she didn’t think he was bipolar (yet) but that would be something she’d be looking for given the situation. We’re also to be looking out for him cutting/hurting himself — he’s a prime candidate for that, too. She hopes a bump in the antidepressant will help and she’s hoping he’ll settle down in the next week to two weeks.

On a positive note he did let me lay with him in bed and we talked for a good long time. While he listened intently I told him that I will love him always, no matter what, and for me that meant that I will never, ever give up on helping him through his anger and sadness. That as a family, we’d stick together and work it out - whatever that meant. It meant that we will never, never stop looking for answers so he can return to the happy Gage he once was. I can tell you that was the most he’d listened to me yesterday.

I can’t say I ever saw mental health issues a huge part of my parenting challenge with the kids after they were diagnosed; I just thought I had to keep them alive. Of course, after we began to unravel this tangled mess that we know as Gage’s mental health, it really makes so much sense, given his personality and medical situation. I’m not surprised now that’s for sure.

Just an example of that…when the doctor said, “Have you noticed any cutting his arms, legs…” I responded, not back with a feeling of shock, like any parent would, but quickly with “No, and I’ve been really looking for that.” That’s just downright cynical, right? That I’m anticipating Gage to be in the small majority of male kid cutters.

With a kid like Gage you really have to be looking for the worst hoping for the best. It’s a defense mechanism for me just to cope. If I didn’t try to stay ahead of the worst thing that can happen, I’d be crying in a corner somewhere as it happened.

Just in case you needed to know why my marriage is strong…

On the phone returning from Gage’s (kidney) clinic visit today I was on the cell with Julian and we were speaking in code because Gage was in the car with me, which often sounds like this,

Julian: “So, how is he today.”

Me: “Well, you know.”

Julian: “No, I don’t.”

Me: “Then guess.”

Julian: “Bad?”

Me: “Not heinous at least.”

Julian: “See, if we just keep lowering our standard, then it won’t look so bad.”

——————

And that my folks, is how we are entering our weekend.

There are a lot of new Mother’s who’ve recently had babies with ARPKD or are waiting for their approaching delivery date. In many cases recently, more often than not, babies have died as a result of ARPKD.

My friend Michele has taken a lot of calls and emails lately from newly diagnosed parents of babies with ARPKD. The PKD Foundation has both of us listed and we are both getting calls/emails. But she is getting more. And she has graciously offered to let me forward people who’ve contacted me to her for support. She’s offering hope along with facts about the seriousness of an ARPKD diagnosis.

It is a hard Mother’s Day for many Moms who’ve lost their babies. And I wish them all peace. Today, those Mothers who’ve  lost a baby to ARPKD are on our minds especially. We are so sad for them. And it brings home the knowledge of how lucky we are to be mothering our children with ARPKD this Mother’s Day.

The past two weekends I have been telling our PKD story because I’ve met some new people. Last week it was Walk for PKD coordinators and this weekend it was with new board members.

I have to say…still over 7 years later it makes me sad when I think about nursing my girl in the living room a few hours after a doctor told me on the phone that my new daughter had PKD and needed a “transplant to survive” — all while I was packing to go home from the hospital with my beautiful, very much wanted and loved baby girl.

Even though I’ve moved on from that day in (what I think is) a positive way, I still think back to those first uncertain, dark days of learning our baby had an incurable, life-threatening disease and I feel sad for that mother.

I remember Julian’s face when he could tell the doctor on the phone was telling me something bad. I remember my sister crying when I repeated the words from the doctor, “polycystic kidney disease” and I remember hoping that the video we were taping couldn’t see the tears streaming down my face as I put my daughter in the car to go home. I remember sitting in the back seat with her and just repeating, “I don’t believe it. She looks so healthy.”

We left the hospital with no information. The clueless doctor didn’t do the simple blood test that would have revealed her kidney function, while reduced, was completely life sustainable. That doctor could have spared us several days of worry while we waited to see a nephrologist to confirm her kidney function.

I remember walking into my house, where my mother was waiting to greet her new granddaughter and how the instant she saw my face knew there was something wrong and instinctively rose from the chair to hug me. I remember sobbing a very deep, loud, humming cry. I remember how Quinn was cradled in my arms between our embrace when this happened. I’ll never forget when I answered the ringing phone and my friend Tina called to check on us how I could barely answer the question, “How are you?” because I was so in shock from the events of the past hour.

Over the next week as Julian and I would lock eyes, one or both of us would begin to cry. I don’t remember how many times I said, “I just don’t believe it. How could this be happening?”

On the day after we brought her home I sent out an email announcing our happiness about the joy of adding Quinnlin to our family. I told our friends and family that along with her beautiful eyes and long fingers and toes (and her 10lb body!) she also had been diagnosed with PKD and that we weren’t sure about much, but that she would need a kidney transplant.

The Saturday of that week was the first time that week I have a clear memory of us being a family of four. Gage was in the bath tub, I was holding Quinnlin and sitting on the floor and Julian was reaching over the tub to bathe Gage. That clear memory was the first in which I thought, things, they just move on…so what’s next?

Over the next couple of weeks we would learn about polycystic kidney disease and its affects. We learned that eventually our sweet baby would need a kidney transplant. We would learn that Gage could have it as well. And in fact, three months later we did. As we grappled with the fact that both of our children were diagnosed with a life-threatening disease we started to figure out what would become the new normal. And we started to learn that meant not sitting back.

Seven 1/2 years down the road I can say that our family has changed a lot from the picture we saw for us as a couple. We turned our sadness into advocacy. We turned our anger into activism. One of the best decisions I made throughout this journey was to connect with the PKD Foundation. They gave me a voice I didn’t know I had and they gave me a platform in which to speak. I’ll forever be grateful for the course our family life took as a result of the connections I’ve made. Connections that have included life long friendships and unparalleled medical care. All as a result of what transpired from the act of one family and one PKD doctor (link coming).

I want to look back at that mother who cradled her sick baby and tell her that it will be hard. There will be days of great fear and sadness. I want to tell her that through it all her family and friends will support them and love them. I want to tell her that her strong marriage will remain strong. I want to tell her that the people that she will meet along the way because of PKD will make her a better person; a stronger person. I want to tell her that no matter what, she’ll never give up and on many days, in fact more than not, she’ll even be happy.