I hated hospitals before LB was born..and now..the very idea of a Hospital or Doctors office makes me cringe and have uncontrollable ucky feelings...like Hospitals are bad juju man..I can sense them now. for Miles....
I read somewhere in my obsessive researching that people with PTSD often will go to great lengths to avoid the trigger of their stress. In my case, I get run through it all at least once every 3 months if not more often. With all of LBs specialists, medical checkups, and the rest of the Early intervention/Disability/Sick child check ins, My whole life has been turned into one long waiting room, waiting on another blood draw. (check his cratine levels, make sure his kidneys are still doing ok), another BP check (hows his heart rate? does he have proper o2 sats?) and urinalysis (any protein? blood? sugar?) on an almost daily basis. LB has cysts on his kidneys, scars on his lungs and liver, hemiparisis of the right side of his body, and he's also missing hi carotid artery due to being on the VtoA Ecmo that saved his life...
A life that wouldn't have needed to be saved. A life that was dong well, just not "optimal" not "perfect" and when a baby isnt "perfect" doctors panic. They especially panic if your a Homebirth transfer, and they panic more, If It's me...
See, I'm a bit "different" Eveything I do Is different, Everything I am, Everything I feel is just a bit "off" for most people. I am pretty sure that I have this "thing" they call "Aspergers" Its a way of categorizing people with personalities like mine, people who are introverted, sensitive, and socially awkward.
It's a popular theory that people with Autism are "mind blind", that is they cannot perceive how others feel and think. In my case it;s a bit different...(and I think this is pretty common for Aspies..
I am a very loving and caring person...but not being able to predict how others react to me Is a life long struggle.
LB and I stayed at THE Hospital overnight for his cold. (this was the hospital that put us all here in the first place, the one I swore I would never go back too, the one that popped Lb's lung and sent us on this wild ride)
At least that's what I thought happened. I found out later that I was being held for observation because the nurses were concerned that I may have Munchhausen syndrome by proxy (that's the nasty psychological Illness where you make your kids sick for the attention of the docs).
Obviously I did not give LB a respiratory infection. What I think happened was..I was scared,
I mean really scared., here I was, in the maternity ward, a place I never EVER wanted to be, in the hospital that I almost died in not two years before, holding my son who was having breathing problems due to a cold that set off an asthmatic attack, with 15 different docs/nurses/professionals coming in and out of the room every half hour, and asking me how we were doing..
heh. so yea, (my aspies will get this for sure) I smiled and said "oh we are great!" when asked if there was anything we needed " oh, no we are fine, thank you *smile* " Add that to the fact that his BP kept spiking the whole night, his breathing was labored but his o2 sats were normal, and I had to talk doc tech to a TON of different people....I can almost see how they came to the munchousens conclusion...
That's the problem. I'm not comfortable in Hospitals, but we spend every 3-6 months at the childrens hospital, with 4 different specilists, plus his thearpy team that comes to the house once a week. We have our own BP cuff, and we do our own urinalisis checks to make sure his kidneys are doing well.
This is our life now. the docs, the tests, the specialists..this is our life...
and I'm sure this is pretty weird for most people. but I am learning to accept it. I'm a little different, I get mis understood alot. I worry about these mis understandings causing problems for me and my family...but then I realize that....No one is in control of what others say/do/think about you. the only thing you can do is be as nice and understanding as you can, and do what's right for you.
I spent that whole time, terrified, frozen, confused, but I never felt any of it, all I felt that whole time was Calm control, because LB needed me to be calm, he needed me to be comfortable with the doctors, the tests, the room that whirred and beeped. He needed me to be Ok so he could be OK,
and you know what? We are.. We are ok. LB is fine. We have meds for his "asthma" and a long term plan with his pediatrician. We survived our hospital stay just fine. And whatever I found out afterwards doesnt change that. Beating myself up for "doing it wrong" isnt going to help me.
and you know what..It NEVER has. I have spent my whole life trying to Appear..well.. not me. I have never once..had the courage to just let it go, to Drop the Mask...to Fall...
So this is my brilliant Idea...I'm going to try it. I'm not going to label it, I'm just going to be. If I'm scared, I'm going to be scared, and If I'm sad I'm going to cry (yes even in public). Because It's the one thing I havent tried. With all the programs, and Learned behavior, and Life experience...
I haven't let myself Fall.....
I hear it feels like flying.....
No comments:
Post a Comment