Sunday, January 13, 2013

I do it because I still can.

Often times in the past 10 years people have commented to us saying- "I don't know how you do it." Or asking "How do you do it?" And I never really know how to respond. The comment is often made in response to a certain aspect of our lives. Whether it's my memory of exact medicine doses, his recent lab values that I can recall off the top of my head, the way in which our home is set up or just knowing what he needs when he needs it.

This week I've heard the comment multiple times, from multiple sources. Every once in awhile, after hearing it from several people in a short period of time it makes me wonder exactly how we do "do it." One comment that struck me most recently was in response to sleeping on the couch (or the bed in which our couch pulls out into) for the last 16 months. I know it may be shocking to some. But it's true- Bryan and I haven't slept in our bed for well over a year now. As some may instantly assume, I will say it has nothing to do with our marriage or relationship. We sleep in our living room with our son. In many's eyes that would seem terribly inconvenient. But we sleep there, in the same room as him, because we still can.

Our daily routine revolves around a med schedule. Even through the night- we set alarms to wake up every couple hours to continue infusing medicine through his central line because we still can.

Most nights Wyatt is sleeping next to me. He's scared to sleep alone. It's not the kind of scared that you would typically think of when it comes to a child...usual nightmares or monsters under the bed. No. Wyatt is scared of laying alone and dying while we sleep. He has told us this in the last year. And to be completely honest, that scares me too. So, I can't say I ever long for my bed or wish things differently. Our couch is just fine. I sleep on that lumpy pull out couch next to my son, often holding his hand, because I still can.

As I rattle off exact medicine doses to our hospice nurse as she visits, our conversation jumps to discussing his lab values of the week, specific types of bacteria, daily output, breath volumes and oxygen requirements. It is a little different than what most Mothers of a young boy do on a daily basis, but I feel if I don't know it, do it, live it- then who will? I take care of my son in this way because I still can.

We don't have nursing. Which is by our own choice. I think if we had nurses who were with us from very early on in this journey our life would be different. But trying to train a nurse in our situation now would not be easy to do and more stressful than would be helpful. I want to take care of my son. I want to soak it all in as I know one day soon I won't be able to do this. I do it all now because I still can.

So, if you are ever left wondering how we do what we do every day. I can tell you, I do it because I still can.
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  1. I love your post. Thank you for sharing. The love in your home radiates.

  2. What a wonderful post. It brought tears to my eyes. Your strength, love & devotion towards your son and family are inspiring. I know it's totally cliche but, keep up the great work!