All We Can Do Is Try...

Reality is setting in. Noah is 2. He is not a baby. He is a toddler. There is a mile long list of things he should be doing at 2 years old. But he's not. And it sucks. It flat out sucks and I will say that without any shame or guilt. Before now, it was easy to turn a blind eye to the fact that he was disabled. Sure, I had to carry him everywhere, change his diapers, bathe him, etc. but that seemed like normal "baby" stuff. But now he's 2. Not so much a baby. He's almost 32lbs and about the same size as his brother. I am having a really hard time with the fact that this is how the rest of his life is going to be. Of course I knew his prognosis for someone with his disease. I know the clinical manifestations of PMD. But I so badly did not want that to be my child. I still don't. All of this is coming at a time when Noah is not doing so hot. He's been sick with fevers a few times over the past few months. He's been vomiting almost every day for the past 9 months. He's getting to a point where he mostly just wants to hang out in his bed a majority of the day. I do not want that to be my child. I want him to interact and play and smile and be happy. But I feel like he is having more bad days than good ones. And it's hard to cope with emotionally. I do not ever want to see him suffer or hurt or be unhappy. I have tried a million and one things to help with his vomiting and at this point it is out of my hands. We are being referred to Dell Children's to have another procedure to place a different type of feeding tube. This new tube will go all the way into his small intestine where he will be fed on a slow, continuous drip for about 22 hours per day. It will be a big change for us but I am so hopeful that this will stop the vomiting. The bad news is that this is yet another intervention. It upsets me to think about this as being another decline in his health. He is no longer tolerating his full feedings like he used to. This new feeding tube is not the end of the world. It's not even that big of a deal in itself. But symbolically, for me anyway, it just means another step backwards. And it's so hard for me to make this decision after I have fought so hard and tried so many things to not let it get to this point. But like I said this is now out of my hands. And maybe this will end up being the greatest thing for him. Who knows? All we can do is try.