The room is dark when we walk in as the only light is from a TV on the wall. A primary color is on the wall, it might be blue. Or green. It’s a familiar room, and it’s cold, just like we remember from a few months earlier.
We’re led to the room by a face I recognize and he’s friendly and warm. I’m holding my son, Gage, who is holding a stuffed animal. A bright orange cat we’ve named Sally (to work on Ls in speech therapy) publicly, but call Ugly Orange Cat privately, is tucked under his arm.
We’ve been referred by our doctor because our daughter has been diagnosed three months earlier with a kidney disease that would eventually lead to kidney failure. This appointment will confirm that he indeed, has the same disease. I’m still nursing our daughter, who is at home with my mother and have orchestrated the timing perfectly. I have a total of 2 ½ hours to return home to feed her.
We tell the tech that our doctor won’t get back to us until that afternoon, maybe the next day and the waiting feels excruciating. Without our knowledge, he leaves the room to speak with the radiologist so she can come and confirm the news on the spot; we now have two children with a life-threatening kidney disease. She embraces me in tears when she realizes she met us a month earlier at a mutual friend’s party. Our son looks at us with a puzzled look when we cry and says, “Ohts wong?”
It’s a little past 2 years later and we’re sitting in our nephrologist’s office without our kids. The purpose of the meeting? To talk about next steps in the process of a kidney transplant for him, starting a growth hormone soon, and being potential kidney donors. We've already begun the drug EPO, the same drug they give to chemo patients to help them feel better. We learn that we have to hold him down, against his will and ours, and administer the drug through painful, stinging shots.
Meanwhile we care for the needs of our daughter, who is also feeling the effects of failing kidneys but so much more healthy in comparison. Her kidney function is 40% and we are thrilled.
It’s 6 months later and we are sitting in the transplant clinic with our son. The doctor explains the process and he says we can’t wait for dialysis. Julian takes our son out of the room because I am in shock and crying. The plan, always the plan, was to perform a preemptive transplant. He suspects that our son will begin dialysis in a month or two. He’s wrong; he begins it in 22 days. We start to realize in those 22 days that he is just walking dead, living but not living. We take an impromptu visit to the dialysis department that day, where we meet a charming nurse who will become a friend as we celebrate in the future and help me advocate for both kids.
It is 6 months later and we get the news that a friend is able to donate a kidney in 12 days. We are fearful for her and our boy, who has just suffered as we would come to learn, a tragic medical trauma (he was awake during part of a surgery). The kidney transplant is a success and we are beyond happy, even as I realized I’d walked through his funeral in my head.
Almost two years from this date and I am walking away from a mental hospital, where my son now resides. I've just committed him, for I don't know how long, because he is a danger to himself and to others. I’m stunned about how I feel that his kidney transplant (and his sister’s) feels like it was a walk in the park compared to this; I've just signed papers for him to be placed in a "safe room" otherwise known as a padded room.
A week from the day I walked away from the mental hospital, where my son resided, when I pick him up with a very small glimmer of hope that he won’t kill himself, either on purpose or by accident, while he is raging. He’s calm. He’s talking. He’s no where near to being himself, but really, because of the last couple of years we don’t really know who he is anymore. We start over being parents to him.
It’s 6 months away from the time and space when I walked away from the mental hospital, where my son resided. I’m struck by how there isn’t a plan for his treatment but rather an involuntary need to be reactionary. We are rarely sure which way to turn and we are nearly always waiting for something bad to happen. Kidney failure brings definition; dialysis and transplant. Mental health treatment brings trial and error that requires stamina, persistence and the willingness to react quickly to unknown factors.
It is now minutes after my son is born. I hold him, feed him and watch him try to open his eyes. I look at my husband and we share a moment of bliss while we admire what we created; a (seemingly) healthy baby.
I remember those details with great clarity; I just don’t remember how that felt.