Since the home office-to-real office I’ve been out of sync with what files are where and the time I can blog and the time I can work on other things so I have decided to go with a new laptop that is fancier - allowing me to carry with me home all my files.

This will even help me blog. I don’t have time to blog at work but when I come home I don’t have things I need, like my photos and an office chair (which I am getting today!). Which is why there isn’t a photo for Friday Photo Fun.

Another example is my contact lists. I have written lists, some on the new Blackberry, an excel file with addresses, and some in Outlook. Things are not merged and purged. It is not good when I am going to call, say a therapist to let her know we are going to be late for an appointment. Or a doctor’s number to get a refill (happens quite often) and well, you get the idea. And let’s just say that when I watch TV would be an excellent time to fix the mess know as my contact database/s. Not something I can justify doing at the office when I need to be working on billable hours!

So, a new laptop that will have it all in one place. That will be good. And it help me blog more! Come on, I know you are excited.

In past summers we’ve loaded up the kids with 1/2 day summer camps they were interested in so that I could work part time. Some of the time I would have a young girl help me with the kids while we were all working at home. This was especially tricky because having me at the house was hard on the kids - they wanted to be with me - or have me answer a question, or I knew where the one lunch item was, or they would fight and I had to intervene.

That new office of ours sure has taken that away. This summer we have a lovely young woman who is about to go to college in the fall watching the kids so that we can work. They are in two day camps, totaling two weeks each and then they have The Big Camp. The overnight camp that is offered through the children’s hospital and courtesy of the National Kidney Foundation. We’ve been calling it Camp Kidney. Although that is not the official name.

The kids are going to an overnight camp, FOR A WEEK. The camp is for kids age 6+ who are sick and/or transplanted (all organs). Nurses, Doctors, Social Workers, Child Life Specialist are the counselors. The schedule looks like fun and I’m hopeful the kids will have a great time.

This is the only overnight camp that Gage and Quinn can go to without us. There is a boy scout camp that Julian can take Gage to and I’m sure there is a Girl Scout camp that I can take Quinn overnight, but honestly, where is the fun in that? There just isn’t an organization that will accept the responsibility for the dispensing of life and kidney-saving drugs. Nor the special requirements for a behaviorally challenged 9-year-old rising 3rd grader. So…we find a couple of day camps they will enjoy and we will send Gage to see his cousin Andrew for a week (Camp Auntie) at 1/2 day science camp (the science of dams) and the kids will have a fun summer, never knowing that they aren’t able to participate in a basic summer activity through normal channels like church or the Y or scouting.

Sometimes (it makes me feel sad that) it feels normal for our family not to do things like the majority of people because we are doing it around the kids’ diagnosis, treatments and abilities (to cope). It is the reality though. And we’ll play up the camps they are in, and they will enjoy being with the lovely young woman, and I hope that Camp Kidney is all that it can be for them. Because it’s their one shot.

In honor of today’s 14 month kidneyversary I will share this with you…

While camping this weekend:

Gage: “Mommy, why do I like diet coke so much?” (it’s a rare treat that I share mine)

Me: “Well, Ms. Jody would have you believe that because you have her kidney you like the things she likes. Like Diet Coke and Chocolate.”

Gage: “Really? Because I already loved chocolate before my new kidney…and I…well…I really didn’t like Diet Coke until I got a new kidney, so maybe….”

Thanks Jody. It still amazes us to this day all the changes in the boy since he got your chocolate and Diet Coke loving kidney.

Some 5 or 6 years ago, I happened on a couple of blogs (for some reason they were a group of infertility, parenting/adoption blogs) and for months I read along with stories. I was sucked right in and found them funny, sad, endearing and educational.

When I began reading them I didn’t know the power they had to the author. I didn’t understand their need to write. It wasn’t long before I entertained the idea. But I didn’t rush out and sign up for a blog. It took at least a year, maybe more, before I did it.

I thought a blog might be a great way to let our families and friends know what was going on with Gage and Quinn. I had been sending out email blasts for a few years and at some point I had more to say than a monthly wrap up of what was going on. There was also the thought that I wanted to put the responsibility on them for checking in, always wondering if they were tired of the updates. And so, the blog was born.

At first it was password protected. Which was great. But then I wanted it to be easier on people so I made it public. Then I added pictures and then the PKD Foundation linked it, then some other bloggers linked it and well, it was really public.

Of course, it’s turned out to be as practical as I thought it would be. Friends and family can know what is going on with the kids easily, with little effort on my part (really, that is true, because Dawn does all my blog set up and maintenance) . What I hadn’t counted on was how therapeutic it would be for me personally. I’ve been able to process some feelings, document and create timelines for the kids disease progression and developmental milestones. I’ve been able to have written documentation of all the things I do for the kids, in hopes one day to say DO YOU HAVE ANY IDEA HOW MUCH I DO FOR YOU? Oh wait, I’ve said that one already.

I hope that Gage and Quinn appreciate it more than the despise it. I’m sure people wonder how I can put our story out there. There are many reasons I do it, but reaching out has been healing for me. And that has allowed me to be better at the kind of parent that these kids need.

In May 2004 - four years ago yesterday, I started this writing journey. Thanks to all of the women who have blogged before me. You created a community of women who support each other and embrace each other. I thank you.

And thanks to you who check in on us, daily, weekly or whenever you’re curious…it doesn’t matter if I know you are not or if I’ve abused our friendship asking for favors. I appreciate you coming here to catch up on things in the crazy world of raising sick kids. There’s comfort in knowing there are people hearing me. Not only have I become a better parent, as I said, I’ve also learned a lot about myself in the process.

Random People: “Be careful! They grow up so fast! Time flies…before you know it they will be graduating high school.”

Me: “Promise?”

My girl! After today she is a 1st grader. This picture was taken at her last Spring Fling at the Magical School we will miss terribly. I have another picture - NOT DIGITAL if you can imagine - that I need to find, scan and post to show you my girl when she started at the Magical School. She was just barely walking, around her 3rd birthday…you will love the photo. If I can locate it that is.

Quinn has been in her school for 4 years. She went straight from Early Intervention services in our county (which included therapy at our home) to this school in our county. She’s thrived under their care.

They have preschool (she went to 3s and 4s), pre-k and k. The structure for this school is to combine typically developing kids from the neighborhood and special needs kids from the county. I think it is usually a 50% split. In her classroom they have a regular k teacher, a special education teacher and a paraprofessional.

The special education teacher’s responsibility to stay on top of her IEP and her goals. There isn’t one thing that she does in the classroom without Quinn’s goals in mind. The other people who work with her do it in and out of the classroom including speech, OT and motor play. For Quinn we have a vision consult available weekly to assist with adjustments to help Quinn learn in the best (visual) way possible as she grows.

One of the great things about having a combined class of special needs and typically developing kids is that they both benefit from the experience. The kids get to learn from each other. Quinn gets to be around kids who are on target for their (her) age so she can learn from them and kids who aren’t usually exposed to kids with differences (both physical and learning) get to learn tolerance and compassion first-hand.

Quinn has also learned compassion. Compassion for others and patience for herself. She also had the chance to see kids with skills ahead of hers and behind hers and she learned that it didn’t really matter in the big picture. She learned that there is beauty in doing your best.

The worst thing that can be done is lumping like-developed kids together in a class. I know this happens in schools. For educators who haven’t benefited from seeing how a school like Quinn’s works, can’t really know how great it can be for all the kids. To only have gifted kids together and to only have special needs kids together is a tragedy. Because, I have proof that kids with different abilities and learning needs work well together. And they can and do learn from each other.

I know some parents of gifted kids don’t want kids like mine mixed in with theirs in an educational setting. And that is wrong. There probably isn’t much that would stop a gifted child from learning and that includes being in the same class with special needs kids. There is, however, a lot they could learn from being exposed to kids who are different — in looks, in learning, in developement, in behavior. Some adults I know could learn a thing or two about special needs kids too. If only un-lumping were universal.

Happy Birthday to my older, wiser sister Pat. Pat’s a tough gal. She survived a crazy disease, two brain surgeries, meningitis, a coma and Minnesota winters until she was an adult.

She’s always ready to lend a hand with the kids and meds (she often says to us, “I can do it! I’m a nurse, you know!”) when we need a weekend break or throw a family party. She and her family vacation with us at the beach, where we get to shop and eat fresh shrimp and talk about how we love the beach.

She was with us in the hospital room when Quinn was diagnosed with ARPKD and I won’t forget her crying after she heard the words, “polycystic” and she explained what a nephrologist was. She shot never-watched video of us leaving the hospital in tears.

She’s an awesome sister who deserves to have a great day. Hopefully that includes a nap, a short day at work (she’s nurse, you know!), and dinner out.

Love ya sis. Happy Birthday.

It was recently brought to my attention (CAROL) that I never let you all know how Gage did at his first ever piano recital.

He was only 5 weeks into lessons at the time and he went first. He performed Old McDonald by himself then his teacher joined him for a piano duet for Merrily We Roll Along.

He went first because order is based on experience. And he did phenomenal. Normally he would have shut down and not wanted to participate. But he walked right up there, played awesome! And then took a bow.

I nearly cried I was so happy for him. He was very proud, although he didn’t want to let on.

He had a bit of a struggle doing some practice at home, but Julian and Gage’s teacher devised a good plan: Gage would be responsible for asking to practice and we would offer any help we could. So far, so good. And for a boy who often opts out when the going gets learning tough - he’s hung with it and I’m proud of him.

Whenever you have a compliment to give to someone and then you say BUT, it really does negate the compliment. When you cut someone down at the same time you talk about how wonderful you are, it looks like you are insecure and really, truth be told, it’s a little sad too.