Battles against terminal illness, anxiety, and life!

I Refuse

My mind is so full of swirling thoughts, a cocktail of emotions potent enough to intoxicate a giant, that I have sat and stared at the blinking cursor on my screen for several minutes. How does one properly communicate what it feels like to sit down in a chair opposite a doctor and converse about end of life decisions for their six year old? Why the end is hopefully not in sight, the fact is very real that we must continue to make sure we both understand what is coming, what to expect, what we cannot predict, how we plan on tackling the big issues. It was like signing up for dance lessons and knowing that some day you will have a dress rehearsal and then a final performance while simultaneously knowing you have two huge left feet, no rhythm, and a fear of crowds. In short, it was extremely uncomfortable. Lest you believe I discussed the end of my son’s life in front of him, I assure you he was in the capable hands of two meds student and charming them, while I talked to the neurologist.

 Neurology always leaves me deflated as Braden’s medical condition greatly affects his nervous system. The effects of a degenerating cerebellum every year become more and more painfully obvious. Things he could do last year become increasingly more difficult and many even impossible. His body and time are not his friends. The truth is that we grow accustomed to each new “normal.” So, sitting down and discussing how things have worsened or progressed is painful. There are even losses that prior to the appointment we were blissfully unaware of. However, with a rested body and a spirit renewed from copious quantities of hugs, kisses, and smiles, we are ready to grab life by the horns yet again.

We have scheduled a GI appointment to discuss (again) a feeding tube. This isn’t to replace traditional eating. Braden is currently protecting his airway rather well. Remember, swallowing is a complex series of events for him. Why then place one you ask? It is taking Braden longer to complete his meals. Eating even burns calories. His increasing extra movements also consume calories. He needs those calories to continue to grow as strong and healthy as possible. So, it would be placed for night time nutrition. The pulmonologist (since lungs must be strong enough to handle the surgery,) the gastro (since he places the tube,) and the neurologist will all discuss this together to determine if and when to make this our course of action. This isn’t the first time we have visited this subject. We know at some point, it will become a reality. The debate is simply when to hit the “go” button.

Some excellent news was we got a gold star from the cardiologist. We should not need to return unless there is some unforeseen circumstance! Whoohooo! Happy dancing over here!

So, we shall continue to focus on what is good, what we can control, and making sure we find as many smiles as we can. We refuse to think that this is our half way point or the beginning of the end. Nope, nope, nope. We have a lot of fight left in us!



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