Well I knew it was too good to be true. Sigh. We almost made it to the follow up appt without anythign happening. Ky’s apetite has been dropping off steadily for a couple of days and then it happened… the righteous poo is back. They sent off another stool culture to check for C-diff or Rotovirus and as much as I don’t want it to be that.. I almost wish it were just because that would be the easy fix. Meds and done. Sigh. Sadly enough I don’t think that is it. So… we have an appt with the Gastro docs in Cincinnati on July 5th. We will see Dr. Cottrill on June 27th for our last checkup on the heart and get the go ahead for the next surgery which we are already in the process of scheduling with Dr. Joe and Dr. Levitt. Sigh….

notice the exuberant amount of (sighs) in this post… that is really how I feel about starting all over again…. sigh.

How is that we become so indifferent? How do we learn not necessarily to “not care” but just to not let it affect us? I think we train ourselves. Be indifferent and it will hurt less…. don’t worry about the future and it will hurt less. Don’t think about the fact that every time you put your child under sedation they may not come back out, and it will hurt less. Don’t think about how drastically your life has changed and it will hurt less. Don’t think about how your child will never be “normal” and it will hurt less. Don’t be upset when setbacks happen… tell yourself it is just a “hill” and it will hurt less. Be indifferent. Don’t feel anything… sigh and go on. Indifference, numbness, sighing that is how we live. But the sad part is… it doesn’t hurt less. It will always hurt the same as it does now. We get used to it. We will live with this for the rest of our lives. No matter how you shape it it sucks. My kid was born with no anus, a tethered spinal cord, pig lungs, a completely jacked up heart, reactive airway, and god knows what else… and no matter how people TELL you to look at it… its still sucks. “just be thankful that she is alive”… and I am. I truly am… but that doesn’t make it hurt less.

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