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.

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.

Julian’s birthday is today.

I am trying to celebrate it more than last year. Honestly, doing anything would be considered celebrating it more. For some reason May 7th always sneaks up on me. I’ve known for something like 18 years that his birthday is May 7th. In fact, every year, it’s the same 7 days into May and yet, I seem to not know how to count to 7 or look at a calendar at the end of April.

Quinn wanted to decorate the whole house, but she settled for three handmade posters and some ribbon. She wanted to surprise him so I was ordered to stay up after J (like that is hard to do) and decorate.

A few times before Julian’s mom died on his birthday I would send her a note and thank her for having such a wonderful son. That I knew the reason he was so good to me (in fact, he’s amazing to me, I’m very lucky) was because of his love for her. I thanked her for having that boy on May 7th so many years ago.

I think this year J-man is feeling the age. He’s stressed to the max but he swears it’s not his age - it’s just work, Q’s impending transplant, financial pressures of raising sick kids, and the stress of raising two sick kids plus one nephew. Things in life right now? Not birthday bliss-like, ya know?

And for his birthday? He gets to go to boy scouts. And he gets to wear that uniform. And I get to laugh. So all in all should be a great day.

(If you want to text him a birthday greeting email me - I don’t care if you don’t know us personally. I just think it would be funny for him to get texted all 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.

Friday’s kidney stone blasting wasn’t very dramatic, although I did use the general anthesisia as a great excuse to nap the entire afternoon. I felt great on Saturday and maybe overdid it a bit, but isn’t that what moms do? Overdo it? The good news is that the stuck stone was dust, the bad news is that the other few stones were left to grow in the kidney for future problems. Just in case you were thinking I am free and clear. All my luck (and history) I’ll have one drop the week Quinn gets her transplant.

I spent Thursday afternoon rotating Quinnlin’s winter, and tired might I add, wardrobe with the fresh spring/summer lot. I also made various piles of the clothes to go away somewhere - the god daughter, the friend’s girl, goodwill and back to the niece of someone who gave us every nice dress Quinn owns. I felt quite good to get that done. Four containers down to three, each season and sized appropriately. We should be good to go with clothes until the end of summer 2010.

Spent most of  Sunday cleaning and organizing and locating items that my son has destroyed or lost and the list is quite long. Long enough to support a post all its own. That’s not good.

On a good note, Gage did great in his piano recital Saturday even though he acted like we were sticking bamboo shoots into his fingernails. His teacher also is taking off this Wednesday due to her son’s playoffs in soccer so Gage was thankful for the game of soccer all of a sudden.

Quinn started swimming lessons on Friday and is supposed to go to swim team clinic today. I guess the pool is heated now to 82, which is quite lovely for a girl who HATES cold water.

And what can only be described as INSANE, I am handling Teacher Appreciation Week. It started this morning with signs and biscuits and flower arranging and delivery. Treats the rest of the week and lunch on Wednesday. Luckily I have a co-chair who is more available during the day to be at the school and so it works out. I was ready for today, but May did kind of sneak up on me. I mean, I know it comes after April every year, but still. Seems like we missed a few days in April.

Saw QPD#1 on Saturday and we had a good laugh about her pee being discussed on blog. She didn’t realize I’d posted something. I told her my readers? Very comfortable with pee.

I’m taking a break from Friday Photo Fun because A) I am about to leave for the doctor to have my kidneys stones (hopefully) blasted and B) Because I haven’t downloaded photos from my camera.

I hope you have a great Friday. I have to tell you - I’m ready to go. That’s because my husband set the alarm an hour early. Yes, I got up at 4:45.

Hey! At least when I get there, I get to go to sleep! But I’m not allowed the Blackberry - so no tweeting or blogging. And I have to say, that’s the worst part about this whole thing.

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.

I have to take another break from TT, because well, I’ve been parenting and working and advocating all over the place. Client meetings, cleaning after renovation, laundry, and newly eating vegetarian (guess I’m following suit with the kids), and spending time untying knots that Gage is making with anything he can find, most recently a chaise lounge tied to a tree. Because shouldn’t everyone have outdoor furniture tied to a tree?

I’ve got a post started and when it gets done I’ll post it. Unfortunately, there are more travels for me this weekend (Board Meeting at the PKD office) and a kidney stone removal procedure next Friday. Gotta love a doc who lets you put that off.

Come on, I know you are jealous!

I’m at Walk for PKD training in Kansas City while my friends and family fend for themselves with the kids. And I’m here with some 50ish people doing the same thing - learning how to plan and execute a flawless Walk for PKD, while simultaneously raising money for research.

I do not have to come here. I’m able to host the event without coming here for training on how to do things better, smarter, faster. I would be able to raise money and have a successful event without being here.

But I need to be here. And I want to be here.

Being around the other Walk for PKD coordinators is the reason. There are some passionate people fighting PKD and being around them inspires me. They inspire me to be a better person. I want to have a BETTER event. I want to take some of their ideas and try them this year. I want to reach out more to people to help me in order to make the event grow. I want to do this in honor of Gage and Quinn. But I want to for the other people that sit in this room with me as well.

There are families represented here that have been dealing with PKD for GENERATIONS. Two, three, four generations. Grandparents, parents, aunts and uncles, siblings. Gone. Because of PKD. A disease that actually has a very good chance to be treated or cured in my lifetime. I can’t understand the pain of losing entire generations to PKD. Entire generations of people that left their families early and their loved ones who missed having their family members with them throughout life. There are other moms, like me, who took their little cherubs home as infants with the devastating news that our babies would need a transplant to survive.

It always helps me put my own struggles in perspective when I am around this many people fighting the same fight. My family and friends, while supportive (like you wouldn’t believe) and loving and most awesome, can’t understand what it is like in my world with sick kids. Yes, they have an idea. And many of them live it with us through our close ties with them and through this blog.

But they can’t understand the despair. They can’t understand how sad it can be in the fight alone facing appointment after appointment with bad news. Facing more complications than you thought you could ever handle. While going through the daily struggles of failing kidneys, educational and social deficits, financial uncertainty, fear of losing my kids, while still trying to make certain our family life is reasonably fun and fulfilling I know that the people who love us can’t understand.

They can’t know how the sorrow can creep up on you at a child’s birthday party, dinner out with friends, or in the quiet of the evening once the kids go to bed. They can’t know how sad it can be to be alone in the daily and unrelenting struggle.

That is not what it is like here. Everyone knows that helping spread the word to raise funds for the PKD Foundation is the quickest way to empowerment. It’s rewarding. It’s amazing to be part of a group that understands and is actively doing whatever they can to make a difference. For their families and for my family.

Here, among these people, I don’t feel so alone.

I have a post for Trauma Tuesdays, but I have to cut what I am copying from the book because the chapter I am covering is about healing trauma and the story/example is long, long. It’s good though and relates to the steps of helping your child heal. So I have to figure out a way to tell Sammy’s story without just copying the whole thing and I didn’t have the brain power because this schedule was on my mind a bit…

Starting on Friday

- My flight leaves at 1:30 to Kansas City and Walk for PKD (coming to a city near you this fall) training begins.

- Julian has to take my nephew to an appointment at 2:00 for me.

- Which is why the BFF has to do her first in-person school pick up duty ALONE. WITH THE CHILDREN. Which makes me giggle a little bit because when she was on the other side of the country she worried about having this happen if she moved here. And well, she’s been here a little over a month so I think I’ve waited enough to use her, right?

- Julian has to drop off the nephew at another appointment at 4:00 in a different location.

- Julian has to pick up Gage from the BFF and take him camping overnight with like a zillion other scouting boys.Where, if I were there would be laughing my ass off at him in his scouting uniform. Because it’s kinda funny and creepy.

- The BFF has to keep the Quinnlin until my truly unbelievable, flexible and agreeable med-knowing sister (She’s a nurse you know!) to watch the Quinnlin overnight and be here for the nephew, too.

- Saturday (on Max’s Birthday! Happy Birthday Max!) she will do whatever with Quinnlin.

- Saturday Julian and Gage will arrive home.

- Sunday (early) Julian will leave for a long business trip.

- The nurse sister will be here until 2:00. I don’t even get to see her this weekend.

- At which time, another BF will take over (Kathy aka Cappy) and watch the kids until I get home off a flight Sunday night.

- They have to feed the dog, too. Luckily the nephew will walk the dog.

- Monday I have a Kidney Stone Watch ‘09 x-ray (wherein I hope I do not break the x-ray machine) to figure out what procedure “we” want to do. And by the way, they want to do it when Julian is traveling next week. I know, awesome, right? Because my life won’t be busy enough with Gage’s two mental appointments, Gage’s CRCT testing (and his predictable going bonkers about it), helping my nephew with his commitments and my mom gone on vacay (how could she leave me at a time like this?), and Julian gone (someone in the fam has to be working!). And oh yeah, I HAVE TO HAVE A KIDNEY STONE THAT IS LODGED IN MY URETER FORECIBLY REMOVED. I’m serious about praying to the kidney gods and begging for mercy while simultaneously offering my firstborn.

I would cry if it wasn’t so completely ridiculous. In fact, since I am not crying in the corner somewhere, don’t you think that makes me a little crazy?