What can I say? Gage loves graveyards. I have no idea why.

When he was almost 4 months old, we sat at the grave site of his Grandma Gin, where I’d held him and I couldn’t believe that he wouldn’t know his father’s mother. She’d fought a courageous battle with cancer and within a week of his birth was back in the hospital and never left. A visiting Gage, with me in tow to carry his diaper bag and feed him, gave her hours of enjoyment in her last weeks. While he was placed on her belly, she’d perk up, smile, touch his head while he looked at her, and then they would both promptly fall asleep.

I’ve made a conscious effort to talk about Grandma Gin. And every time we’re in the town Julian grew up in, we visit her grave. We clean off the stone, make sure the flowers (usually plastic) are straight and we talk about Grandma Gin. During a visit in May, Gage was very interested in the graveyard. He was saying “who is buried here?” and “why don’t they have any flowers?” and “I want to put flowers on all of them!”

On our drive back to the city he pointed out every single graveyard we passed, asking if it were old or new. I promised him we’d visit our city’s largest, oldest graveyard. And we did. Within a couple of weeks, we were making our way with our picnic lunch and blanket. Keep in mind people, this graveyard is a tourist attraction. Morbid I know, but he was interested. It was summer; I was searching for field trips. And hey! Famous people are buried there!

Gage’s eyes lit up the moment we entered and parked along the thin driveway. We parked and walked around. We looked at gravestones, statues and mausoleums. We talked about how old the people were when they died and we talked about why some of the stones were turned over. He tested every door to each mausoleum to see if it was unlocked. You have never seen a boy so happy to enter a mausoleum. You would  have thought I just allowed him to watch TV in bed, while eating a brown sugar and cinnamon pop tart dinner and drinking a diet coke, way past his bedtime of 7:30.

Gage doesn’t like sports. He doesn’t like to play them in an organized fashion; he doesn’t like to watch them. He likes to garden, he likes to tie string and ropes together and create barriers between doorknobs and toys. He likes to build tunnels with books for his carpet city and play in large boxes, he likes to build forts out of blankets and apparently, he likes graveyards. So, I guess I’m his link to the graveyards.

I admit it. As a mom to kids with a life threatening disease, I am trying to jam pack their lives with as many experiences as possible. And well, I’m drawn to let them experience as much as they can, while they can. Even if it involves mausoleum door checking. Is it morbid to spend a day at a graveyard because your son is interested? Not if it allows him to do something a different mom wouldn’t have let him.

Last year I discussed The Urine Factor, here. Go ahead, I’ll wait.

Dr. Wonderful had prescribed a couple of drugs to help. It was something we were going to try. Because she is the world’s most sensitive doctor, she was concerned about Gage’s quality of life. And ours too. With Gage starting kindergarten last fall we were worried about his day at school and um the 4 accidents he’d have on an average day.

He started two drugs in July 2004 and after tweaking we had good results. He was urinating less frequently and wasn’t waking up soaked in the morning. We’d gone from changing his pull up at 11pm and 2am to one change between 11pm-2am. He was doing well at school. He was still having accidents, but not so many, and with the help of teachers prompting him to go during the day things were good. Tolerable. Stable.

Because one of the drugs can restrict blood flow, it can damage the kidneys. I mean, it can damage the already cystic kidneys. Yeah. Fun. So with the recent decrease in kidney function as a warning sign, the drugs were decreased. We saw almost immediate problems again with accidents during the day and soakings in the morning. More pee. More laundry. More monitoring his trips to the bathroom. More being the urine police. This should make the second first week of kindergarten fun.

Last week after a desperate “things are not so good” email to Dr. Wonderful (me thinks she wishes I only had her fax number) she ordered labs to see where kidney function is at after the med decrease. He’s at 1.9 creatinine and 77 BUN. So, we wait. Sigh. Adjust the meds. Sigh. Redraw blood for labs. Ugh. Wait.  Deep breath. Exhale.

Repeat.

1. A child with great muscle tone and foot and toe control allowing the ability to wear sandals, flip-flops or slides.

2. A 4 year old being able to walk down stairs unassisted.

3. A child whose milestones are met with ease.

4. The joy of NOT having to have a discussion EVERY DAY about your child’s urine or volume of urine.

5. A parent-teacher conference where you only meet with one teacher. Not several who are involved in your child’s daily learning.

6. Not having to form a close relationship with your child’s pharmacist.

Just heard from Dr. Wonderful, who, has moved along from "bears watching" last month, to "worriesome" this month. So…the dreaded decrease of meds that have been helping Gage pee less frequently. And with school starting. Not good. But neither is decreasing kidney function.

For those of you charting along with me in your own Excel spreadsheet – last lab creatinine 2.1, up from 1.9 last month, and .08 when he was diagnosed, just 3 years ago.