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There are many reasons why I write this blog everyday. A lot of it has to do with needing a place to process my own feelings, an outlet for expressing my fears and hopes and all the good and bad that comes along with this. I often write to pass along information to all of you, my friends and family and the community that has formed a circle around us over the last two years. As I help you to better understand what we’re going through, you’re then better able to support us as we go through it. And sometimes when I write, it actually helps me and Mark see our situation and our path ahead more clearly.  

After I posted last night about this dilemma, Mark and I both realized, first separately and then together after reading and rereading the post, that the decision is fairly clear. It is not easy. And it is not good. But it is there.

We cannot afford to keep cancer, or even potential cancer, inside Austin just to save his kidney. He can live without a kidney. And that is all it comes down to.

Now this doesn’t mean we are going to rush ahead with the surgery. It is still enormously risky and we’ll gather as much information as we can first, from the needle biopsy and whatever else. The doctor from St. Jude said he was willing to try a kidney-sparing surgery; he did not say he could do one (and he was very clear about that with me on the phone; doctors do not like to give guarantees, you know).  So kidney failure has to be something we are willing to accept if we go down that road. And it is no walk in the park.  I sat down with Austin’s nephrologist a few weeks ago so she could take me through some of the basics of dialysis and everything she told me sounded pretty awful. It was do-able, it was bearable, but it was pretty awful nonetheless.

First of all, you know we’d have to be in the hospital, with Austin hooked up to a machine for four hour stretches three times a week. She said they do their best to schedule it around school and work and other activities but most people are either on a Monday-Wednesday-Friday schedule or a Tuesday-Thursday-Saturday schedule. Now as much as I love Rainbow Babies’ and Chidlren’s and as happy as I’ve been with the care we’ve received over the past two-plus years, the idea of spending all that time in the hospital is crushing. It feels like a weight coming down on top of me, squashing the breath out of me.

Next thing (because I really can’t dwell on the squashing-the-breath-out-of-me thing right now) is that he’d have skin grafts on his forearm where they’d basically be putting veins and arteries on the outside of his skin large enough to allow massive amounts of blood to flow in and out of them during the dialysis process. If you’ve followed this story from the beginning, you remember the trouble we had with Austin’s central line (Broviac) and how difficult it was to keep him from touching it and dirtying it or tugging on it and all those things little kids do. These skin grafts would again need to be kept clean and dry at all times and would place him at great risk of infection, bringing back all those automatic trips to the ER for minor fevers and the like.

Then, there is what his nephrologist described as the most difficult part of dialysis, especially for kids and that is the serious dietary restrictions. I don’t know a lot about this yet, but I do know we’d have to limit potassium (bananas), phospherous (cheese — his all-time favorite food, which he requests in slices “as big as my house” and if I give him a normal sized amount, he whines and says, “No, as big as my new house!”), salt, and fluids. As in severely restricted intake of fluids because he wouldn’t be peeing anymore (which seems strangely sad to me in and of itself) and would only flush out all that waste every other day. Anyone who has ever tried to control the diet of a toddler knows that suddenly removing entire groups of food (especially those once thought of as relatively healthy) is exceptionally difficult.

I know we can do this. And we will if we have to. But I wish more than anything that Austin didn’t have to prove his strength yet again. I wish he didn’t have to be brave and resilient and tough. I wish he could just be normal, do the things normal kids do, eat the food normal kids eat, assume he will reach his tomorrows like normal kids will. I wish we could just leave him alone, let him grow up unharmed and unscathed. I wish he could just be.

Just let my Austin be.

I baby Austin.

I’m sure that doesn’t come as some huge surprise, a shocking admission of illicit behavior or anything. I mean, who wouldn’t, right? There is a preciousness about him, a sacredness that makes me want to hold him and cuddle him and coddle him. And he is the consumate mama’s boy, absolutely choosing me over all others at all times. So he asks to be held and I hold him, he beckons and I come, he cries and I’m immediately there to make right whatever is wrong.

But this is not really doing either of us any favors. He has a learned helplessness that only rears its ugly head with me and Mark. He’s great with babysitters, great with his grandparents — independent and funny, easy-going and easy. But with us, he’s helpless and needy, clingy and babyish. Not all the time or anything; he is still the confident and active little boy I’ve often described. But there is a part of him that we thought he’d outgrow which instead is becoming more and more deeply ingrained in his personality.

It’s hard to know which came first — is this an actual outgrowth of all he’s been through? Pain and discomfort, separation from his parents at his scariest moments? Or have we caused it, by hovering over him, by willingly and happily giving in to his every whim? Or might it just be the way it would have always been, cancerous background or not? Of course, we’ll never know the answers to those questions. But I do know that he craves my physical presence; he wants to be touching me, holding me, whenever I’m near him. He sometimes asks to hold my hand in the car, which sounds sort of sweet but certainly isn’t safe as I reach back awkwardly to stick one hand in his while driving with the other.

I’ve realized that I am good at letting him take physical risks. I let him climb the play structures without my hand at his back; I let him race headlong down the steep part of the yard, which often ends in skinned knees. I pride myself in allowing this degree of recklessness. He falls, cries and gets back up again, as resilient as ever.

But I do not let him take emotional risks. I don’t want him to have to tough it out when he’s scared or afraid. I think a lot of parents of my generation are the same way; we don’t want our kids to feel alone or abandoned when they need us most. It is, after all, our job to protect and comfort them. But I also know that he will never gain any emotional resiliency if I don’t let him, or force him, to find ways to protect and comfort himself.

I trace a lot of this back to his treatment days when I was still nursing him. I nursed him because, not only was it the only nutritious thing he could keep down in the three days following each Friday’s chemo session, but also because it was the best way to soothe and quiet him during scary and painful medical procedures. He literally drew strength, emotional and physical, from my very body. And sometimes now, I feel as if he is doing the same thing — that he is sucking me dry, draining me emotionally and physically with his need, and with my inability to not jump when that need is expressed.

All of this has been heightened by my time here in Chautauqua, as it is only I he clings to and only I who can provide the comfort he requests. My mom has been watching us and trying to figure out how to help and how to help me guide him to greater independence. She pointed out that I often try to encourage him by assuring him that I’m present. “It’s okay, Austin, mommy is right here. I’m right next to you, you’re safe.” She suggested that instead I try to empower him to feel good and safe and okay with himself, as in, “It’s okay, Austin. You’re doing great on your own. You can do this.”  So this is what I’m now trying to do, give him the power to comfort and protect himself.

I know many of you have backgrounds in child psychology and social work and related fields and so I welcome any bits of wisdom or insight you might throw my way on this.

On a lighter note, those of you who laughed at the photos of us on our Jamaican pony adventure, will appreciate the fact that I took the boys on a drive through the countryside today, during which we stopped outside many a farm fence to get out of the car and watch the horses and cows, sheep and donkeys. You should have seen the shocked delight on Austin’s face when we actually heard a rooster crow. “Daaaht cool,” he said in his deep and breathy Dietrich voice.  After we commented on how beautiful it was, hill after rolling hill of green, I asked Braedan if he thought he might like to live out here and without missing a beat he said, “Nope.”

You can take the boys out of the Heights, but you can’t take the Heights . . . well, you know.

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