Being Human

I was not going to post about this but after a lot of soul searching I feel it's important that I record this part of the journey just because someday someone might read this while going through the same kind of thing and maybe reading about this will help them. obviously this is my first time dealing w/ this kind of situation and maybe I am expecting too much, although i don't feel I am.

On December 15th our neurologist grabbed my hand and told me they were there to help and would be w/ us every step of the way. he hasn't so much as acknowledge our presence during our last 2 appointment sending in his very nice but very not knowledgeable of DMD nurse practitioner. At the first follow up they almost refused to see us because we were only 5 minutes early and they prefer we be 15 minutes early in case we need to fill out paperwork,which we have not needed to do. Then we sat and waited over an hour in a room. When the nurse practitioner did come into see us she couldn't answer even one of my simple questions. I left very upset. Our 2ND appointment went slightly better this time we were 20 minutes early to not fill out paperwork again and we sat for 40 minutes in the room. Both our pediatrician and nurse practitioner have spent the last 2 months discussing who will do the monthly checks to make sure his steroids aren't causing issues, they have yet to come to a decision but they did read someone should do it. I am not kidding that is pretty much an exact quote. I mean I have read that too, I also discovered that he should be on a calcium supplement, which no one prescribed and when I asked they said that was good idea. when I asked about a medical social worker i was asked to call around and let them know what I found out since other people could benefit from it.

The pulmonologist was especially cruel arguing w/ us that their were several different types of duchennes then realizing she misspoke and said their were several kinds of MD which is of course true but she was really getting nasty w/ us when we had no clue what she was talking about. She then said everything looked good but we needed to do a sleep study to make sure he was getting enough oxygen at night because and this a quote "That's the first thing to go." This isn't a car w/ tons of miles this is my son. I mean who says that? Never once did she say she was sorry or even offer the slightest bit of compassion. Even asking what it was she was supposed to do for us. Apparently she didn't have time to read the referral.

Yesterday we meant w/ geneticist which I was very, very worried about. He was awesome. Asking how we were handling everything ad actually caring about my answer. He was the first person to say that given my family history I am likely not a carrier and that there was nothing I could have done to cause this. he talked to me for 20 minutes, even though my kids were acting crazy, it's was great and above and beyond what I was expecting.

I honestly do not expect everyone to treat us as if we are their number one priority or that their life revolves around what is happening w/ my family but it doesn't take much to act like you care. i realize it is just another day at the office and that doctors cannot get emotionally involved in every case. I think though they could acknowledge that for us our life is currently revolving around this. that our child is sick and as the people we are paying to take care of our kid they do owe us a bit of sensitivity.

I am scared, terrified, unsure, and extremely angry about this diagnosis. I need to know that the people treating my child our educated on his disease. I need the doctors, nurses, receptionists to treat us like humans not numbers. Just because Shelby and I aren't sobbing doesn't mean this isn't still hurting. We have to be as normal as possible for our kids, that doesn't mean that we are indifferent to this disease or that you can talk about my child's body parts like they are car parts. I don't know maybe I am asking too much but am i really? Is it wrong to expect compassion?