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.

Happy Father’s Day to fathers everywhere, including my own father, but most especially Julian.

I am so extremely lucky to have met him, and I’m lucky to be with him as we raise these kids. I don’t know how it would be possible to do this exact same life with these kids without him. (I know, if I wasn’t with him I wouldn’t have these kids - but you know what I mean!)

Circa  Nov. 2002

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.

Julian,

Fifteen years? Are you kidding me? How did that go so slow and so fast in equal parts?

Who knew? I sure didn’t. I mean, I knew I’d be married to you 15 years later, but I didn’t know we’d survive, you know…survive a lot of crap. I mean look at us in this picture - so young and full of hope! Thinner! More hair! We still got it, babe.

And yet, we still wake up each morning committed to our marriage. A marriage of mutual respect and understanding. A marriage of forgiveness. A marriage of humor. You make me laugh nearly every single day because you are able to see the ridiculousness of our life in just the way I need for you to a the exact moment I need you to. We both understand that our humor is what gets us through the hard times because if we let our guard down for one minute, we might fall apart.

We both understand that could very well happen - the falling apart. I think what makes us unique is that we understand that we can’t fall apart at the same time and when each of us senses the other one is close to the edge of falling apart we take over for the other person. That’s what I love about you - you can be tormented for a period of time, yet you understand that my torment is just a smidge greater and you embrace it enough for it to fade.

We’ve had good times, right? Luckily we still allow ourselves to be a couple against the world. I know - and it’s a great comfort to me daily - that you put me and our kids first for every decision you make and everything you ever consider for our family. As a wife and your partner I’m endeared more to you each day because of that and so much more.

But not by the way you chew bananas. Does it have to be so loud? And while I’m at it, you swallow loudly, too. Which I really did once think you did on purpose to annoy me until I realized that our daughter drinks loudly as well. It’s genetic. Crap. We’re full of genetic surprises.

You are a great husband. I’m not just saying that because it’s our anniversary. It’s true. I hate to say it, but I kind of feel sorry for all the people that can’t be married to someone just like you. Because there is no way they could be as happy with their spouse as I am with you. Being married to you is a joy and a privilege. And when Gage talks about your 31 ex-girlfriends I always think, even still, that I beat them out and how awesome that is for me and not for them. Can’t manufacture those feelings is what I say.

I have to thank you for…bringing me diet cokes without me asking, never making me kill a bug or take out trash, or take Gage to boy scouts. Thanks for letting me laugh at you when you are in your boy scouts uniform, thanks for dissing the same people with me and for always sticking up for me. Thanks for not making me go to sporting events when I don’t want to. Thanks for encouraging me to have time alone to pursue my own interests. Thanks for looking at your relationship with your father and creating new paths for your own fatherhood. Thanks for making me laugh and knowing when to keep your mouth shut — it’s a gift, you know?

You are remarkable person. And even if I wasn’t married to you, I’d want to be around you. That’s saying something, right? I wish all of our friends could enjoy a LEGAL marriage like we can. Maybe before our next 15 years of marriage that will happen.

Happy Anniversary. I love you.

Julia

PS - I LOVED our wedding. Thanks for changing my mind about having one with our family and friends with us. You were right all along , through the rough times it’s been and will continue to be something wonderful to look back at and remember with joy.

Julian: “Gage needs to study the last two words of his spelling words. He knows 4 of them.”

Julia: “I’m okay with four.”

________________________________

Quinn: “Mrs. Teacher yelled at me today.”

Julian: “She did? Does that mean you didn’t earn your stars today?”

Quinn: “No! I was good.”

Later

Julian: “I think Quinn talked about Mrs. Teacher because she wants it to look like she is in trouble like Gage.”

_________________________________

Julian: “Did you ever think it is YOU who is the problem?”

Julia: “No, I have actually never had that thought.”

________________________________

Gage: “I want to die.”

Julia: “I bet Ms. Playwithme would like to hear about that. Will you tell her?”

_______________________________

Julian: “I’m tired of this.”

Julia: “So.”

Julian: “Well that was mean.”

Julia: “I’ve got no nice left today. Check back tomorrow.”

_______________________________

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.

After breakfast cooked by my husband, gifts, angelic children at church, brunch that included my own carafe of special “punch” at Babette’s and my lovely husband let me take a nap. If you count 4 hours as a nap.

When Julian gently touched me to wake me up he said, “Sorry, but I wanted to see if you wanted to get up.”  To which I replied, “Is it still Sunday?” That’s how good of a nap it was.

It was a good day.

When we were at church Quinn crawled into my lap for the end of the service. She was leaning into me and very tired. She’s not feeling her best lately and all the more obvious that her daily living is impacted by PKD. So I asked her if she wanted me to hold her. Instead of saying yes, she slowly moved her feet over my lap, and instinctively knew I would lift her into my arms. When she does this we have the perfect position where we’re both comfortable. Her laying across my lap with her head buried in my right shoulder, my right arm supporting her back and where my left hand rests on her legs or meets my other arm where I interlock my fingers. Her arms are usually tucked up into her chest. Sometimes when I am looking at her she will look up and catch me staring at her and she always is surprised by this. Which makes me laugh a little bit, because we’ve had this same routine for years. She will say “What?” and I will say “I’m just looking at my smart, sweet, beautiful girl!” She smiles or giggles nearly every time.

While I was listening to the last hymn (Still holding Quinn, I was seated with others unable to stand) I was thinking about how vulnerable she is right now. I had a clear thought I wanted to remember the moment of holding my girl who needs some extra attention right now. Some extra understanding from her parents and those that love her. While she understands the general concept of getting a kidney because of what Gage has gone through, she doesn’t really know how hard it will be. And there’s a deep pain inside of me for her because it will be something that she has to go through and I can’t change that part.

Being a mother to a child that faces a life threatening disease has it’s own unique challenges as you might imagine. The challenge changes almost daily with a new treatment, new symptom, social or education deficit, or an emotional need that needs to be addressed. There’s a deep appreciation that my child is alive and has options for treatment. A deep, deep gratitude for the people that have the skill to help save her and the willingness for someone to want to give her a kidney.

While my Mother’s Day mirrors many other women (I can only hope!) in the area of rest and gifts and apprecation from their families, today I was thinking about all of the ways I am different. I sure am different from the kind of mother I thought I would be. Which is a direct result of the kind of kids I have. Oh, how I love them. And the incredible gifts they have taught me. I just wish there wasn’t so much to learn sometimes.

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.

1. I grew up in Minnesota.

2. It was really cold, but it was good for snowmobile picnics and ice skating.

3. I have 3 older sisters but grew up in my teenage years an only child when I moved to Georgia with my parents and my sisters stayed in Minnesota.

4. I’ve broken, at different times, at least 13 of my fingers and toes.

5. My first kiss with a boy was in 7th grade, in a hall after school.

6. If I had to pick one food to eat it would be toasted bagels with cream cheese. If I could pick a second, it would be lobster. With butter. Is that three?

7. I was married before Julian.

8. I make Julian laugh calling my ex: “My Other Husband.”

9. I love my job, but don’t want to work so much right now.

10. When I was growing up and into my adult life, my family and friends called me Julie and I changed it to Julia when I met Julian (who was called Jeff at the time).

11. My middle name is Rae - I guess because I was my Dad’s last chance for a boy and his name is Ray, however, they almost named me Raymona.

12. I was a gymnast until I broke my ankle and then I started swimming competitively through high school and on a city team.

13. I wish I had friends from my first 13 years - in Minnesota, but I haven’t keep up with anyone.

14. I can turn my tongue over.

15. I love TV. I get this from my Dad. Who loved Star Trek. He used to pay me 25 cents to sit still through it.

16. My most creative time is between 9pm - 1am.

17. I drink Diet Coke for breakfast.

18. I nearly go insane hearing repetitive noises like gum cracking, pen clicking and iced tea glass-stirring.

19. My son drives me insane with repetitive noses like cracking his knuckles, humming, and foot tapping.

20. Some days on my best parental days I don’t feel like I’m enough of a parent for Gage.

21. I am left-handed for writing and eating, but play sports right-handed.

22. I secretly wanted my kids to be left-handed, but they are not.

23. I love to go to movies.

24. I’ve only seen one movie with Julian in 8 years. I banned him from going with me because he never had anything nice to say about a movie. It was a buzz kill.

25. I started sewing when I was a kid.

26. I took a sewing class in 7th grade. I loved it. Probably my favorite class ever.

27. But I liked dissecting the cat, too.

28. I have a wide circle of friends.

29. Maintaining my friendships is one of the things I’m most proud of.

30. I like crafting. I like to think I am more artistic than I actually am.

31. I like a sense of order in my living space.

32. I am depressed when my house is out of order.

33. At least once a day I think I will out live one or both of my kids.

34. One of my favorite movies is Guess Who’s Coming to Dinner.

35. I think we will end up as foster parents to sick kids when our kids are older.

36. Julian rolls his eyes when I say this out loud.

37. This scares the crap out of him, because once or twice when we were dating, I said I would be a mom to a kid with special needs.

38. In my twenties I didn’t think I would live through my thirties.

39. In 6th grade I attended a brand new school, that was touch-feely. We sat in circles and called the teachers by their first names.

40. I was molested by a friend’s dad somewhere between age 5-10.

41. I am extremely open with the kids about good touch, bad touch.

42. One of the nicest things I heard someone say about me when they didn’t know I could hear was when I was holding Quinn at church (Quinn was 4 days old) was “She is someone that was meant to be a mother, look at how confidently she holds Quinn.”

43. I wanted to be a geologist when I was in 6th grade.

44. I suck at math, but I love billing clients the best. Figuring out cost and profit.

45. I think blogging is cheap therapy.

46. I like Motown, 60s/70s and Country music.

47. I still think my husband is awesome.

48. I feel sorry for him that he is republican.

49. I always tell people, “Don’t hold it against him, he’s a great guy.”

50. I have serious flaws. But working on them are way down on the list.

51. I need less sleep than other people.

52. Or I tell myself that to make myself feel better.

53. We don’t consider traveling outside the country with the kids because of their medical situation.

54. One of the things I HATE most about mothering sick kids is holding them while they fight a medical procedure screaming and crying.

55. I never read The Di Vinci Code because I didn’t think I’d be smart enough to follow it. Seriously stupid thought. But I did see the movie and understood the whole thing.

56. I love my blackberry. Don’t hate me. I want one with a camera but can’t justify the expense.

57. I have a sound machine that Julian got me with something like 20 sounds, but he will only let me sleep with one of them (ocean) when he is home.

58. Since I wrote the first 52 on this list, I’ve taken in my homeless 22 year old nephew and am advocating for his special needs through the federal and state government. It’s like I have 3 kids.

59. I drive Julian crazy by rearranging things in the house; from small things (salt and pepper) to large things (sofa, chairs) and sometimes I do this on purpose.

60. I highly recommend the removal of your uterus (if you have one and it gives you trouble).

61. I have a lot of regrets about Gage’s preschool experience. But I didn’t know any better and I should give myself a break.

62. I love Mike’s (of Hard Lemonade fame) Mike-arita, but can’t find it anywhere.

63. I wish I had more time to sew. I’m decent at it and it relaxes me.

64. I had a bridesman stand up for me in our wedding. I don’t get to see John often and I miss him.

65. I loved (just as a fan) Shawn Mullins before he was famous and I have all his before-he-was-famous CDs.

66. I am a feminist, but I don’t think anyone knows it.

67. I won $1000 calling in and answering a question on the radio 20-some years ago.

68.  One of the scariest things besides watching my son be near death was hearing him say he wanted to kill himself - and realizing that he really did want to die.

69. A 40+ year old man tried to pick me up when I was about 12 by asking me for directions while I was on a bike. When I came out of the drug store, he was there waiting for me and asking if I had a boyfriend that I kissed. I just biked away from him as fast as I could. I’ve always wondered why I didn’t go back into the store.

70. I played the flute and cello in elementary and jr. high school.

71. I think my sense of humor is what gets me through the tough spots of raising kids that could die from a disease that we genetically gave them.

72. I would love to be able to speak another language but I do not have the patience to learn.

73. I wish I could change some things about the heath care system, like the waiting, the jumping through hoops, helping the  inspiring health care workers to listen to the kids more and to slow down a little bit, and the paper work.

74. I like to drive old cars. I think newer cars with computer chips and power whatever were created to make me crazy. I’m a fan of a car that doesn’t have too many bells and whistles. (Just bought a basic 1991 Volvo, with no bells or whistles)

75. I am not a pack rat. I hang on to things I am sentimental about, but I am constantly getting rid of things.

76. I like to shop at estate sales, consignment shops and garage sales. That’s why I am constantly getting rid of things. I rotate what I newly like best.

77. I have a strong marriage. It comes easy but we work hard at some things too.

78. We are funny (at least to each other). We think we’re hysterical. It helps that if one of us wants out of the marriage that person has to take the kids.

79. I can’t pass a TV channel that has Notting Hill playing. Tried. Can’t do it.

80. I also watch and re-watch episodes of West Wing.

81. Gage and Quinn have congratulatory notes from the presidents when they were born somewhere in memory boxes.

82. Many times a day I envy Quinn and her ability to go at her own pace (for every slow moving second) and not care when people try to rush her. I call it Quinn Time.

83. I’m usually a terrified public speaker, but somehow talking about the kids and PKD isn’t so terrifying to talk about.

84. Each year a renowned PKD doctor asks me to speak to first year medical students about PKD and our experiences with the health care system. It’s rewarding like you wouldn’t believe.

85. Someone once told me that parenting special needs kids shouldn’t define me as a mother. This person has healthy kids and does not know of what they speak.

86. I’m on speaking terms again with God. I find that our relationship is like a river - sometimes wide and flowing and sometimes narrow and stagnant.

87. Within months of Quinn being diagnosed and days of Gage being diagnosed with ARPKD a pregnant woman told me she hands-down wanted a boy (to make it easier on her for clothing, toys) and then said, “As long as he’s healthy. He better be healthy. Because I don’t know how I’d handle it if something were wrong with him.”

88. I’m on Facebook and Twitter. I like to check/use both on my blackberry. I don’t care who knows it either.