I have been neglecting writing anything personal here lately because I have had a post brewing. Some have asked me how I am doing. Here’s what I am struggling with.
How do you live your daily life with a child who feels fine but has a terminal illness?
I have the most inane thoughts throughout the day related to this.
I’m cleaning – I have a thousand papers from school and preschool. I don’t have room to keep them all but how do I throw away anything that Nathan creates? When he is gone will I hate myself for throwing it away? Will it be more of a burden because after he is gone because then how can I ever throw it away?
I am setting up my Upromise account. I have to funnel the funds into 529 accounts. I put it all into Julia’s – why bother putting it in Nathan’s – it will go to Julia eventually anyway.
Nathan is throwing a fit. He wants something that I have said no to. I am being consistent with our rules around the house by saying no. Will I hate myself when he is gone for making him upset?
I recently made a bad decision. I decided not to get new hearing aid molds for Nathan. This was right after his most recent scans and I felt that maybe things were going to start going south fast. I took him in because his hearing aids needed to be adjusted but I told the tech that for several reasons I wasn’t going to get new hearing aid molds. They are a little pricy – but not out of reach or anything. It was a decision made with my emotions. It turns out that with his hearing aids being turned up the fact that the molds were too small became a problem. Fortunately for me – the tech called the school audiologist the next day and she and the teacher of the deaf (who I both know) decided that they would go to the school and take the impressions and give Nathan new molds.
I just don’t know how to make decisions about Nathan. Sometimes I feel like I am doing things right and other times I know I am not. I know people who turn their lives upside down for their children in this situation. They let them stay up all night – take them to buy tons of toys etc, etc. I just don’t think that is the best thing..especially because we have Julia too.
I am glad we went to Disneyworld. That was one decision I made that was right. Otherwise I still tend to feel that life as usual is the best thing.
So – I am just left with my own struggles. It is awful but that movie title keeps coming into my head “Dead Man Walking”. He’s here but I can’t shake the thoughts of his future. He talks about being a teenager, or middle school or when he gets married and I just answer him as if that will happen when I know it won’t. It breaks my heart.
I know, I know…..people tell me that I can still hope for a miracle and I have not given up all hope but I am a realist and so I know the most likely scenario.
I try to be positive on a daily basis. All that matters on a given day is what is happening that day. Nathan feels great and I have plenty of time to feel awful when he feels awful so I really try not to think about it all – but then when I am doing the mundane things I can’t but help but be confronted with something that reminds me of the situation and there I am factoring in my decision Nathan’s future (or lack thereof)
So – there you have it. That’s where I am with all this right now. I could not think of a title that I could live with so untitled it is.