I remember everything about the moment I heard that Quinn had polycystic kidneys. What I was wearing, where I was sitting on the hospital bed, where the nurse was standing after she informed us to wait for the doctor to call, hearing my sister’s cry as I said the word “polycystic” out loud and as Julian whispered “what’s wrong?” I remember the look of terror on his face.

I remember similar details of things during other times of unbelievable news. I remember details about the day we learned about OMA on the Internet. What computer I was on, what time is was. And later the diagnosis and treatment for it, the evaluations where we learned the truth about the developmental delays. I remember how I felt, how stunned I was.

I’ll always remember the Radiologist who recognized us from a mutual friends’ party a month earlier as she entered the ultrasound room, how she told us about Gage’s cystic kidneys, hugged me and started crying. She came because the tech had told her we would have to wait at home for our nephrologist to call. She’d read on the report that our daughter had the same disease and she was sad for us. The room was cold. I remember when we drove home we were crying as quietly as we could while Gage was in the back seat so we wouldn’t upset him. And how both Julian and I tried to talk on the phone spreading the news about Gage and we had to keep taking over for each other because one of us couldn’t talk through the sobbing.

And today, wearing flip flops and thinking I needed a pedicure, in my office, with the Olympics playing in the background and Julian out of town, I heard from Dr. Matter of Fact about Gage’s kidney function. And how it is decreasing. I’ll remember that I kept my composure while she told me about the bad lab results from this past Monday, and about how he is growing out of his inadequate kidney function. And I’ll forever remember how I was okay until she said “it’s time for us to meet and talk in person about the next stage” - she meant the drugs, his diet, the treatments. Then the tears came. I’ll remember that the news took my breath away.

So, Monday, we’ll repeat labs and Friday, September 3rd we’ll go in to see Dr. Matter of Fact without Gage. We’ll learn more about Gage’s reduced kidney function, about the things in his little body that poor kidney function is affecting and the next course of testing and treatment. And as his parents, we’ll speculate on when he’ll have a transplant and how we’ll comfort him during the journey. We’ll have unspoken thoughts about his survival. And we’ll ponder how we’ll survive this, and we’ll think that this is just round one. Quinn is right behind him. We’ll lean on our faith to carry us through. We’ll depend on our families and friends to let us voice our fears.

So, for the next week especially, our emotions will be raw about our handsome little boy who really likes to play with cars, loves cinnamon-butter sandwiches and is fascinated with lights and light switches.

This week Quinn started the process of being evaluated for special services by the board of education. She is turning 3 next month and during this “transition” out of the State’s Early Intervention Program (Babies Can’t Wait) she is being evaluated by the county for where she is developmentally to see what services they will provide for her.

She spent about an hour with a couple of different evaluators for hearing, then cognitive, speech, language, gross motor and fine motor, and social/self help (yes, that’s a category, of which I could use some assistance in). Much to the shock of my Inner Hope Addict, Quinn tested low in almost every area of development during this first round. In one week, we’ll go back for the big evaluation, with multiple therapists for several disciplines. It will probably take about 2 hours. Then a month later (without Quinn in tow) I’ll go to hear about what services they believe she needs.

Since Gage started Kindergarten I’m ever more aware that he will spend the year trying to catch up. I’m just starting the process of making sure his IEP (Individualized Education Plan) is in order and being implemented (the school hasn’t been in touch yet – what’s up with that?), so we’ll see how that goes. Even though I marvel at the kids’ progress and am grateful and appreciate each and every milestone they achieve, I’m still sad they have to struggle to reach them.

It doesn’t matter if you expect it or not. It still always sounds bad to hear your child is behind developmentally.

It’s their job, these people with the bad talk. Most of them mean well. But I honestly think they forget, even though they have said these things hundreds of times to other parents of challenged kids, this is the first time that most of us are hearing it about this child. Our baby. And even as Hope sits there, nodding politely, she’s ready to let her Inner Defensive Mom out at a moments notice.

We seem to be having some success with the new meds to help us with Gage’s lack of concentration is his urine. Almost 4 weeks of meds, 4 visits to the lab, an increase in one of the drugs, and things are better. Good thing. School starts Monday. Not a Church’s preschool, but bona fide public school - Kindergarten.

He’s doing better. Now that we’re settled from the move, vacation (the picture!) and summer, he’s doing well with the potty. And the meds are helping. I suppose I can really tell at night. Instead of changing his pull up at 11:00pm and 2:00am, we’re doing one change and he is not waking up soaked from head to toe. Less sheet changing, less washing. Less work.

Score 1 for Team G/Q.