Last week, we had The Talk with the pediatrician. The Talk about a possible g-button (tube) in KayTar's future.
It isn't imminent and we aren't taking any sort of action on it right now, not even a surgical consultation, but it is out there now. It is the next line of defense.
As long as she continues to drink her Pediasure willingly, and as long as her weight doesn't suffer, we can continue on this current plan. However, if there is further decline, if her weight starts slipping, if she starts refusing to drink her Pediasures, that is the next step.
And it is kind of freaking me out.
Her weight is not the only risk here, if she fails to get proper nutrition, everything is at risk. All the hard won developmental milestones and progress she has made would be at risk. The brain cannot function properly without adequate nutrition, so we have to be sure she is properly nourished.
I've found that most people (including myself) have a very strong reaction to this possibility. The truth of the matter is, not only do I see this food situation differently than her hearing loss, everyone else does too. Food is fixable. It is hard to accept that it is ever truly out of a parent's control. And so even the suggestion of surgery seems extreme. It seems like we are giving up or like the doctor is jumping to outrageous conclusions. But that isn't the case.
The pediatrician is being proactive in having this discussion with us now, while it is only medically advisable and not medically necessary. She is giving us time to process in case it ever does become necessary. She is protecting the work we have done with KayTar, the work KayTar has done, the amazing little person she's become.
If it ever comes to surgery, then we cannot look at it as the enemy or something to be avoided at all costs. If it ever gets to that point, I have to be prepared to set those thoughts aside and be able to look at it as the means to keeping her healthy. That is all it will be. A simple way to keep her healthy. A way to feed her without the trauma of battle. If it comes to it, she would never be impeded from feeding orally, we would just have plan B on days when she didn't. The truth is, if I were to make a list of pros and cons on this one, there would be a long list of things in the pro column and two things in the con column, surgery and scarring. That is the only downside. And yet it feels so much larger than that, even as a possibility.
But we aren't there yet. So I have plenty of time to work through this, in case it every becomes more than a possibility or suggestion. I'm working on it, but truthfully, this regression is one of the hardest, if not the hardest, thing I've had to process. I think I am fairly skilled at processing things and releasing them. I find it quite necessary in living this life. But this, I am having a hard time with. I am over thinking it, I'm second guessing myself, I'm jumping to conclusions, I'm viewing it all under a microscope, and I don't know how to fix that.
Every day, sometimes every meal, I bounce between thinking, "She's never going to eat again." and "OMG! She's getting better!" based on her reaction. In truth, eating or not eating at a single meal means nothing for the future, and yet I cannot keep my heart from leaping or drooping in reaction.
Yesterday, she ate McDonald's nuggets again, 3 of them, and I immediately hopped on the phone and called Josh and said, "We have to find nuggets with batter like these, she'll eat them!" and he said, "You mean like the dino nuggets we bought 2 bulk boxes of that she hasn't touched? Nothing works for long, Kyla. There is no magic answer here." And he is right. Nothing works for long. There is no pattern here. No answer to unlock. No magic answer. But I want there to be a magic answer with every fiber of my being. And although I know it is unrealistic, I cannot stop pursuing it. I want to believe it is out there, that somehow we are at fault for not finding it, because if this is our fault, it is also within our power to rectify it. In truth, it isn't our fault. There is no magic solution, and I need to focus on the fact that she had a singular positive eating experience and be pleased with that. I need to stop looking at this as a solvable problem.
I need to lower my expectations to match our reality, because the disproportion is agonizing. I know I am causing it, that I am the only one who can stop tormenting myself. I even know which expectations need adjusting. I just don't know how to put it into practice. I can't let this go no matter how hard I try. Nothing has been this hard for me. Not when she couldn't walk. Not when she couldn't speak. Not when we found out she couldn't hear. Not when we found out she was globally delayed by roughly a year. Not when we found out she has lesions sprinkled about in her wee brain. Not even when we were so close to an answer and had it ripped away. I can't pinpoint the difference, except we are actively in this. Fighting against it. Hoping for a change. Maybe the root of it is I believe change is possible because she once had this. A little over a month ago, she was released from OT because she was eating. EATING. And now, here we are. How do I stop expecting her to regain that ground? How do I lower my expectations so that I can simply be? How do I get to the point when I truly don't care whether she has eaten, where I can simply be happy for the positive experiences? I know exactly what needs to change, I just can't put it into practice right now. And so I talk. And talk. And worry. And talk. And hope that whether she ever gains this ground back or not, I can learn to be happy with it, just like she is.