It will all be ok.

I’m exhausted. There is no other way to put it. I can barely get off the couch to go to the bathroom. This is not depression. This is a result from lack of sleep. Xander keeps me up at all hours of the night. If he’s not waking me up, than it’s my alarm clock going off telling me it’s time to change his feeding bag. This schedule is so hard. I try to nap when I can but catching sleep here and there is not the same as getting a full night’s. Surprisingly, I am not a raving lunatic…well Ron might disagree with you there. But in all seriousness, I am somewhat upbeat.

But don’t get me wrong, my emotions are definitely spent. I am tired of being worried all the time. If Xander breaths wrong, I immediately rush over to see what’s wrong and to take his temp. I’m always assessing his stools, his skin color, his eyes, etc… to see how he looks today. I look over his thin little body hoping to see a fat roll or pudge somewhere. I obsess over his blood work results. I compare his new numbers to the previous ones and then track the trends. Tracking them makes me feel as if I have some control over them…even though I know I don’t. Silly, I know.

I think this is the hardest time right now. In his condition he is not getting better. Just worse. We talk to the docs about how he’s doing. They are very nice and answer all of our questions as best as they can. There are never any hard and fast answers, just guesses. Then they say he looks great and send us about our way. Later they will call with the results of his blood work. They will tell us what came back low or high, whatever the case may be and then add another med to his daily regimen to get the numbers back in balance. I try not to fuss too much about the number of medicines Xander is on. I know without them he would be a very, very sick little boy.

But what is most troublesome of all that I have a hard time accepting is that none of this will ever be over. He will have to deal with this for the rest of his life. It kills me he was dealt this card.

But for the moment he doesn’t have to deal with any of it simply because he doesn’t know he’s any different. With all he’s been through, he remains a happy baby boy. He is so trusting and loving. He passes out more smiles than I can count. I admire his heart, his strength and his spirit. I love looking into his beautiful, bight eyes. I can see his little soul peering out at me. It speaks to me and tells me he knows that he has a fight ahead of him and that he is ready. He says don’t worry Mommy. I am not going anywhere. I am far from done here.