Hard Questions

One of the reasons I started this blog was to document the journey we are on with an undiagnosed disease and to reach others in a simular situation. actual diagnosis? What does that mean? How long do you think he has? What do you see his death look like? Where do you see his death taking place? Do you have thoughts about a ventilator? What about putting him on a rate? When do we say stop? How do we tell his brothers that Shaun is going to heaven before he grows up? When do we tell them?


 Currently on our journey, we are confronted nearly daily with hard questions. They come from nurses, doctors, hospice staff, and our own minds. Is this going to be what sends Shaun over the edge?
Many of these questions aren't answered yet. They are situational I've decided. I will know when enough is enough. I asked Shaun to tell me. His diagnosis? He has an undetermined mitochondrial disease with cerebellar and brain stem degeneration and hot spots in his basil ganglia. In other words, his brain is shrinking and dying off until it won't function any longer.
How do you ever ask a Mom what their child's death looks like? This question angered me in the beginning. Where does it take place goes right along with it. I didn't birth our precious baby boy saying that his death was going to come so quickly. And I don't even know when it is going to be right now... It could be years away... or weeks away. If I say that I want him home during that time, what are we going to do with the big boys? Are they there? Is our whole family together? I don't know. I think its situational. Is Shaun in distress or is he peaceful? How would I ever go back in that room or worse let another one of our children sleep in that room? Maybe they would want to so they could feel closer to their brother. I don't know. So much to be decided...  I pray that God decides for me and takes him quickly in the middle of the night like He did Sarah. Keep us from having to say, "I give up. Stop." But really it isn't giving up on him... it is releasing him from this trap, maybe even torment, of a body that doesn't work right. It will be hard though because right now he is on machines that will alarm if that takes place. Then what? Do I do nothing? My heart will cry to help him in any way!! Any mother's heart would, I think. Yet I know with the progression of this disease, his normal body functions will cease as the brain deteriorates. It has so much already. When that comes, probably the next thing that will need to be decided is if we put him on a ventilator, at night or even all the time. They can assist or breathe for you... I don't want him to feel like he is suffocating. I know that feeling and it is scary! That is the last thing I want for our boy. Yet, I do not want to keep him here if he is ready to go to the arms of Jesus. Circumstantial again. Can Shaun still interact or can he not? Does he still have that gleam in his eye, reaching for hands to hold next to his cheek? If so, how could I not help him breathe? Is it wrong to not want to see him hurting? Am I hurting him more? I don't know... but again, I think he will tell us.
These are a few of the many thoughts of a Mom who is sitting there watching her son lose the battle yet he is such a little Champion.